Jennifer Senior | The Atlantic

Why Can’t Americans Sleep?

2025-06-30T06:00:00-04:00

Illustrations by Armando Veve

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I like to tell people that the night before I stopped sleeping, I slept. Not only that: I slept well. Years ago, a boyfriend of mine, even-keeled during the day but restless at night, told me how hard it was to toss and turn while I instantly sank into the crude, Neanderthal slumber of the dead. When I found a magazine job that allowed me to keep night-owl hours, my rhythms had the precision of an atomic clock. I fell asleep at 1 a.m. I woke up at 9 a.m. One to nine, one to nine, one to nine, night after night, day after day. As most researchers can tell you, this click track is essential to health outcomes: One needs consistent bedtimes and wake-up times. And I had them, naturally; when I lost my alarm clock, I didn’t bother getting another until I had an early-morning flight to catch.

Then, one night maybe two months before I turned 29, that vaguening sense that normal sleepers have when they’re lying in bed—their thoughts pixelating into surreal images, their mind listing toward unconsciousness—completely deserted me. How bizarre, I thought. I fell asleep at 5 a.m.

This started to happen pretty frequently. I had no clue why. The circumstances of my life, both personally and professionally, were no different from the week, month, or two months before—and my life was good. Yet I’d somehow transformed into an appliance without an off switch.

I saw an acupuncturist. I took Tylenol PM. I sampled a variety of supplements, including melatonin (not really appropriate, I’d later learn, especially in the megawatt doses Americans take—its real value is in resetting your circadian clock, not as a sedative). I ran four miles every day, did breathing exercises, listened to a meditation tape a friend gave me. Useless.

I finally caved and saw my general practitioner, who prescribed Ambien, telling me to feel no shame if I needed it every now and then. But I did feel shame, lots of shame, and I’d always been phobic about drugs, including recreational ones. And now … a sedative? (Two words for you: Judy Garland.) It was only when I started enduring semiregular involuntary all-nighters—which I knew were all-nighters, because I got out of bed and sat upright through them, trying to read or watch TV—that I capitulated. I couldn’t continue to stumble brokenly through the world after nights of virtually no sleep.

I hated Ambien. One of the dangers with this strange drug is that you may do freaky things at 4 a.m. without remembering, like making a stack of peanut-butter sandwiches and eating them. That didn’t happen to me (I don’t think?), but the drug made me squirrelly and tearful. I stopped taking it. My sleep went back to its usual syncopated disaster.

In Sleepless: A Memoir of Insomnia, Marie Darrieussecq lists the thinkers and artists who have pondered the brutality of sleeplessness, and they’re distinguished company: Duras, Gide, Pavese, Sontag, Plath, Dostoyevsky, Murakami, Borges, Kafka. (Especially Kafka, whom she calls literature’s “patron saint” of insomniacs. “Dread of night,” he wrote. “Dread of not-night.”) Not to mention F. Scott Fitzgerald, whose sleeplessness was triggered by a single night of warfare with a mosquito.

But there was sadly no way to interpret my sleeplessness as a nocturnal manifestation of tortured genius or artistic brilliance. It felt as though I’d been poisoned. It was that arbitrary, that abrupt. When my insomnia started, the experience wasn’t just context-free; it was content-free. People would ask what I was thinking while lying wide awake at 4 a.m., and my answer was: nothing. My mind whistled like a conch shell.

But over time I did start thinking—or worrying, I should say, and then perseverating, and then outright panicking. At first, songs would whip through my head, and I couldn’t get the orchestra to pack up and go home. Then I started to fear the evening, going to bed too early in order to give myself extra runway to zonk out. (This, I now know, is a typical amateur’s move and a horrible idea, because the bed transforms from a zone of security into a zone of torment, and anyway, that’s not how the circadian clock works.) Now I would have conscious thoughts when I couldn’t fall asleep, which can basically be summarized as insomnia math: Why am I not falling asleep Dear God let me fall asleep Oh my God I only have four hours left to fall asleep oh my God now I only have three oh my God now two oh my God now just one.

“The insomniac is not so much in dialogue with sleep,” Darrieussecq writes, “as with the apocalypse.”

I would shortly discover that this cycle was textbook insomnia perdition: a fear of sleep loss that itself causes sleep loss that in turn generates an even greater fear of sleep loss that in turn generates even more sleep loss … until the next thing you know, you’re in an insomnia galaxy spiral, with a dark behavioral and psychological (and sometimes neurobiological) life of its own.

I couldn’t recapture my nights. Something that once came so naturally now seemed as impossible as flying. How on earth could this have happened? To this day, whenever I think about it, I still can’t believe it did.

In light of my tortured history with the subject, you can perhaps see why I generally loathe stories about sleep. What they’re usually about is the dangers of sleep loss, not sleep itself, and as a now-inveterate insomniac, I’ve already got a multivolume fright compendium in my head of all the terrible things that can happen when sleep eludes you or you elude it. You will die of a heart attack or a stroke. You will become cognitively compromised and possibly dement. Your weight will climb, your mood will collapse, the ramparts of your immune system will crumble. If you rely on medication for relief, you’re doing your disorder all wrong—you’re getting the wrong kind of sleep, an unnatural sleep, and addiction surely awaits; heaven help you and that horse of Xanax you rode in on.

It should go without saying that for some of us, knowledge is not power. It’s just more kindling.

The cultural discussions around sleep would be a lot easier if the tone weren’t quite so hectoring—or so smug. A case in point: In 2019, the neuroscientist Matthew Walker, the author of Why We Sleep, gave a TED Talk that began with a cheerful disquisition about testicles. They are, apparently, “significantly smaller” in men who sleep five hours a night rather than seven or more, and that two-hour difference means lower testosterone levels too, equivalent to those of someone 10 years their senior. The consequences of short sleep for women’s reproductive systems are similarly dire.

“This,” Walker says just 54 seconds in, “is the best news that I have for you today.”

He makes good on his promise. What follows is the old medley of familiars, with added verses about inflammation, suicide, cancer. Walker’s sole recommendation at the end of his sermon is the catechism that so many insomniacs—or casual media consumers, for that matter—can recite: Sleep in a cool room, keep your bedtimes and wake-up times regular, avoid alcohol and caffeine. Also, don’t nap.

I will now say about Walker:

1. His book is in many ways quite wonderful—erudite and wide-ranging and written with a flaring energy when it isn’t excessively pleased with itself.

2. Both Why We Sleep and Walker’s TED Talk focus on sleep deprivation, not insomnia, with the implicit and sometimes explicit assumption that too many people choose to blow off sleep in favor of work or life’s various seductions.

If public awareness is Walker’s goal (certainly a virtuous one), he and his fellow researchers have done a very good job in recent years, with the enthusiastic assistance of my media colleagues, who clearly find stories about the hazards of sleep deprivation irresistible. (In the wine-dark sea of internet content, they’re click sirens.) Walker’s TED Talk has been viewed nearly 24 million times. “For years, we were fighting against ‘I’ll sleep when I’m dead,’ ” Aric Prather, the director of the behavioral-sleep-medicine research program at UC San Francisco, told me. “Now the messaging that sleep is a fundamental pillar of human health has really sunk in.”

Yet greater awareness of sleep deprivation’s consequences hasn’t translated into a better-rested populace. Data from the CDC show that the proportion of Americans reporting insufficient sleep held constant from 2013 through 2022, at roughly 35 percent. (From 2020 to 2022, as anxiety about the pandemic eased, the percentage actually climbed.)

So here’s the first question I have: In 2025, exactly how much of our “sleep opportunity,” as the experts call it, is under our control?

According to the most recent government data, 16.4 percent of American employees work nonstandard hours. (Their health suffers in every category—the World Health Organization now describes night-shift work as “probably carcinogenic.”) Adolescents live in a perpetual smog of sleep deprivation because they’re forced to rise far too early for school (researchers call their plight “social jet lag”); young mothers and fathers live in a smog of sleep deprivation because they’re forced to rise far too early (or erratically) for their kids; adults caring for aging parents lose sleep too. The chronically ill frequently can’t sleep. Same with some who suffer from mental illness, and many veterans, and many active-duty military members, and menopausal women, and perimenopausal women, and the elderly, the precariat, the poor.

“Sleep opportunity is not evenly distributed across the population,” Prather noted, and he suspects that this contributes to health disparities by class. In 2020, the National Center for Health Statistics found that the poorer Americans were, the greater their likelihood of reporting difficulty falling asleep. If you look at the CDC map of the United States’ most sleep-deprived communities, you’ll see that they loop straight through the Southeast and Appalachia. Black and Hispanic Americans also consistently report sleeping less, especially Black women.

Even for people who aren’t contending with certain immutables, the cadences of modern life have proved inimical to sleep. Widespread electrification laid waste to our circadian rhythms 100 years ago, when they lost any basic correspondence with the sun; now, compounding matters, we’re contending with the currents of a wired world. For white-collar professionals, it’s hard to imagine a job without the woodpecker incursions of email or weekend and late-night work. It’s hard to imagine news consumption, or even ordinary communication, without the overstimulating use of phones and computers. It’s hard to imagine children eschewing social media when it’s how so many of them socialize, often into the night, which means blue-light exposure, which means the suppression of melatonin. (Melatonin suppression obviously applies to adults too—it’s hardly like we’re avatars of discipline when it comes to screen time in bed.)

Most of us can certainly do more to improve or reclaim our sleep. But behavioral change is difficult, as anyone who’s vowed to lose weight can attest. And when the conversation around sleep shifts the onus to the individual—which, let’s face it, is the American way (we shift the burden of child care to the individual, we shift the burden of health care to the individual)—we sidestep the fact that the public and private sectors alike are barely doing a thing to address what is essentially a national health emergency.

Given that we’ve decided that an adequate night’s rest is a matter of individual will, I now have a second question: How are we to discuss those who are suffering not just from inadequate sleep, but from something far more severe? Are we to lecture them in the same menacing, moralizing way? If the burden of getting enough sleep is on us, should we consider chronic insomniacs—for whom sleep is a nightly gladiatorial struggle—the biggest failures in the armies of the underslept?

Those who can’t sleep suffer a great deal more than those gifted with sleep will ever know. Yet insomniacs frequently feel shame about the solutions they’ve sought for relief—namely, medication—likely because they can detect a subtle, judgmental undertone about this decision, even from their loved ones. Resorting to drugs means they are lazy, refusing to do simple things that might ease their passage into unconsciousness. It means they are neurotic, requiring pills to transport them into a natural state that every other animal on Earth finds without aid.

Might I suggest that these views are unenlightened? “In some respects, chronic insomnia is similar to where depression was in the past. We’d say, ‘Major depression’ and people would say, ‘Everybody gets down now and then,’ ” John Winkelman, a psychiatrist in the sleep-medicine division at Harvard Medical School, said at a panel I attended last summer. Darrieussecq, the author of Sleepless, puts it more bluntly: “ ‘I didn’t sleep all night,’ sleepers say to insomniacs, who feel like replying that they haven’t slept all their life.”

The fact is, at least 12 percent of the U.S. population suffers from insomnia as an obdurate condition. Among Millennials, the number pops up to 15 percent. And 30 to 35 percent of Americans suffer from some of insomnia’s various symptoms—trouble falling asleep, trouble staying asleep, or waking too early—at least temporarily. In 2024, there were more than 2,500 sleep-disorder centers in the U.S. accredited by the American Academy of Sleep Medicine. Prather told me the wait time to get into his sleep clinic at UCSF is currently a year. “That’s better than it used to be,” he added. “Until a few months ago, our waitlist was closed. We couldn’t fathom giving someone a date.”

So what I’m hoping to do here is not write yet another reproachful story about sleep, plump with misunderstandings and myths. Fixing sleep—obtaining sleep—is a tricky business. The work it involves and painful choices it entails deserve nuanced examination. Contrary to what you might have read, our dreams are seldom in black and white.

Armando Veve

Whenever I interviewed a clinician, psychiatrist, neuroscientist, or any other kind of expert for this story, I almost always opened with the same question: What dogma about sleep do you think most deserves to be questioned?

The most frequent answer, by a long chalk, is that we need eight hours of it. A fair number of studies, it turns out, show that mortality rates are lowest if a person gets roughly seven hours. Daniel F. Kripke, a psychiatrist at UC San Diego, published the most famous of these analyses in 2002, parsing a sample of 1.1 million individuals and concluding that those who reported more than eight hours of sleep a night experienced significantly increased mortality rates. According to Kripke’s work, the optimal sleep range was a mere 6.5 to 7.4 hours.

These numbers shouldn’t be taken as gospel. The relationship between sleep duration and health outcomes is a devil’s knot, though Kripke did his best to control for the usual confounds—age, sex, body-mass index. But he could not control for the factors he did not know. Perhaps many of the individuals who slept eight hours or more were doing so because they had an undetected illness, or an illness of greater severity than they’d realized, or other conditions Kripke hadn’t accounted for. The study was also observational, not randomized.

But even if they don’t buy Kripke’s data, sleep experts don’t necessarily believe that eight hours of sleep has some kind of mystical significance. Methodologically speaking, it’s hard to determine how much sleep, on average, best suits us, and let’s not forget the obvious: Sleep needs—and abilities—vary over the course of a lifetime, and from individual to individual. (There’s even an extremely rare species of people, known as “natural short sleepers,” associated with a handful of genes, who require only four to six hours a night. They tear through the world as if fired from a cannon.) Yet eight hours of sleep or else remains one of our culture’s most stubborn shibboleths, and an utter tyranny for many adults, particularly older ones.

“We have people coming into our insomnia clinic saying ‘I’m not sleeping eight hours’ when they’re 70 years of age,” Michael R. Irwin, a psychoneurologist at UCLA, told me. “And the average sleep in that population is less than seven hours. They attribute all kinds of things to an absence of sleep—decrements in cognitive performance and vitality, higher levels of fatigue—when often that’s not the case. I mean, people get older, and the drive to sleep decreases as people age.”

Another declaration I was delighted to hear: The tips one commonly reads to get better sleep are as insipid as they sound. “Making sure that your bedroom is cool and comfortable, your bed is soft, you have a new mattress and a nice pillow—it’s unusual that those things are really the culprit,” Eric Nofzinger, the former director of the sleep neuroimaging program at the University of Pittsburgh’s medical school, told me. “Most people self-regulate anyway. If they’re cold, they put on an extra blanket. If they’re too warm, they throw off the blanket.”

“Truthfully, there’s not a lot of data supporting those tips,” Suzanne Bertisch, a behavioral-sleep-medicine expert at Brigham and Women’s Hospital, in Boston, told me. That includes the proscription on naps, she added, quite commonly issued in her world. (In general, the research on naps suggests that short ones have beneficial outcomes and long ones have negative outcomes, but as always, cause and effect are difficult to disentangle: An underlying health condition could be driving those long naps.)

Even when they weren’t deliberately debunking the conventional wisdom about sleep, many of the scholars I spoke with mentioned—sometimes practically as an aside—facts that surprised or calmed. For instance: Many of us night owls have heard that the weather forecast for our old age is … well, cloudy, to be honest, with a late-afternoon chance of keeling over. According to one large analysis, we have a 10 percent increase in all-cause mortality over morning larks. But Jeanne Duffy, a neuroscientist distinguished for her expertise in human circadian rhythms at Brigham and Women’s, told me she suspected that this was mainly because most night owls, like most people, are obliged to rise early for their job.

So wait, I said. Was she implying that if night owls could contrive work-arounds to suit their biological inclination to go to bed late, the news probably wouldn’t be as grim?

“Yes,” she replied.

A subsequent study showed that the owl-lark mortality differential dwindled to nil when the authors controlled for lifestyle. Apparently owls are more apt to smoke, and to drink more. So if you’re an owl who’s repelled by Marlboros and Jameson, you’re fine.

Kelly Glazer Baron, the director of the behavioral-sleep-medicine program at the University of Utah, told me that she’d love it if patients stopped agonizing over the length of their individual sleep phases. I didn’t get enough deep sleep, they fret, thrusting their Apple Watch at her. I didn’t get enough REM. And yes, she said, insufficiencies in REM or slow-wave sleep can be a problem, especially if they reflect an underlying health issue. But clinics don’t look solely at sleep architecture when evaluating their patients.

“I often will show them my own data,” Baron said. “It always shows I don’t have that much deep sleep, which I find so weird, because I’m a healthy middle-aged woman.” In 2017, after observing these anxieties for years, Baron coined a term for sleep neuroticism brought about by wearables: orthosomnia.

But most surprising—to me, anyway—was what I heard about insomnia and the black dog. “There are far more studies indicating that insomnia causes depression than depression causes insomnia,” said Wilfred Pigeon, the director of the Sleep & Neurophysiology Research Laboratory at the University of Rochester. Which is not to say, he added, that depression can’t or doesn’t cause insomnia. These forces, in the parlance of health professionals, tend to be “bidirectional.”

But I can’t tell you how vindicating I found the idea that perhaps my own insomnia came first. A couple of years into my struggles with sleeplessness, a brilliant psychopharmacologist told me that my new condition had to be an episode of depression in disguise. And part of me thought, Sure, why not? A soundtrack of melancholy had been playing at a low hum inside my head from the time I was 10.

The thing was: I became outrageously depressed only after my insomnia began. That’s when that low hum started to blare at a higher volume. Until I stopped sleeping, I never suffered from any sadness so crippling that it prevented me from experiencing joy. It never impeded my ability to socialize or travel. It never once made me contemplate antidepressants. And it most certainly never got in the way of my sleeping. The precipitating factor in my own brutal insomnia was, and remains, an infuriating mystery.

Sleep professionals, I have learned, drink a lot of coffee. That was the first thing I noticed when I attended SLEEP 2024, the annual conference of the American Academy of Sleep Medicine, in Houston: coffee, oceans of it, spilling from silver urns, especially at the industry trade show. Wandering through it was a dizzying experience, a sprawling testament to the scale and skyscraping profit margins of Big Sleep. More than 150 exhibitors showed up. Sheep swag abounded. Drug reps were everywhere, their aggression tautly disguised behind android smiles, the meds they hawked called the usual names that look like high-value Scrabble words.

I’ve never understood this branding strategy, honestly. If you want your customers to believe they’re falling into a gentle, natural sleep, you should probably think twice before calling your drug Quviviq.

I walked through the cavernous hall in a daze. It was overwhelming, really—the spidery gizmos affixed to armies of mannequins, the Times Square–style digital billboards screaming about the latest in sleep technology.

At some point it occurred to me that the noisy, overbusy, fluorescent quality of this product spectacular reminded me of the last place on Earth a person with a sleep disorder should be: a casino. The room was practically sunless. I saw very few clocks. After I spent an afternoon there, my circadian rhythms were shot to hell.

But the conference itself …! Extraordinary, covering miles of ground. I went to one symposium about “sleep deserts,” another about the genetics of sleep disturbance, and yet another about sleep and menopause. I walked into a colloquy about sleep and screens and had to take a seat on the floor because the room was bursting like a suitcase. Of most interest to me, though, were two panels, which I’ll shortly discuss: one about how to treat patients with anxiety from new-onset insomnia, and one on whether hypnotics are addictive.

My final stop at the trade fair was the alley of beauty products—relevant, I presume, because they address the aesthetic toll of sleep deprivation. Within five minutes, an energetic young salesman made a beeline for me, clearly having noticed that I was a woman of a certain age. He gushed about a $2,500 infrared laser to goose collagen production and a $199 medical-grade peptide serum that ordinarily retails for $1,100. I told him I’d try the serum. “Cheaper than Botox, and it does the same thing,” he said approvingly, applying it to the crow’s-feet around my eyes.

I stared in the mirror. Holy shit. The stuff was amazing.

“I’ll take it,” I told him.

He was delighted. He handed me a box. The serum came in a gold syringe.

“You’re a doctor, right?”

A beat.

“No,” I finally said. “A journalist. Can only a dermatologist—”

He told me it was fine; it’s just that doctors were his main customers. This was the sort of product women like me usually had to get from them. I walked away elated but queasy, feeling like a creep who’d evaded a background check by purchasing a Glock at a gun show.

The first line of treatment for chronic, intractable sleeplessness, per the American Academy of Sleep Medicine, is cognitive behavioral therapy for insomnia, or CBT-I. I’ve tried it, in earnest, at two different points in my life. It generally involves six to eight sessions and includes, at minimum: identifying the patient’s sleep-wake patterns (through charts, diaries, wearables); “stimulus control” (setting consistent bedtimes and wake-up times, resisting the urge to stare at the clock, delinking the bed from anything other than sleep and sex); establishing good sleep habits (the stuff of every listicle); “sleep restriction” (compressing your sleep schedule, then slowly expanding it over time); and “cognitive restructuring,” or changing unhealthy thoughts about sleep.

The cognitive-restructuring component is the most psychologically paradoxical. It means taking every terrifying thing you’ve ever learned about the consequences of sleeplessness and pretending you’ve never heard them.

I pointed this out to Wilfred Pigeon. “For the medically anxious, it’s tough,” he agreed. “We’re trying to tell patients two things at the same time: ‘You really need to get your sleep on track, or you will have a heart attack five years earlier than you otherwise would.’ But also: ‘Stop worrying about your sleep so much, because it’s contributing to your not being able to sleep.’ And they’re both true!”

Okay, I said. But if an insomniac crawls into your clinic after many years of not sleeping (he says people tend to wait about a decade), wouldn’t they immediately see that these two messages live in tension with each other? And dwell only on the heart attack?

“I tell the patient their past insomnia is water under the bridge,” Pigeon said. “We’re trying to erase the added risks that ongoing chronic insomnia will have. Just because a person has smoked for 20 years doesn’t mean they should keep smoking.”

He’s absolutely right. But I’m not entirely convinced that these incentives make the cognitive dissonance of CBT-I go away. When Sara Nowakowski, a CBT-I specialist at Baylor College of Medicine, gave her presentation at SLEEP 2024’s panel on anxiety and new-onset insomnia, she said that many of her patients start reciting the grim data from their Fitbits and talking about dementia.

That’s likely because they’ve read the studies. Rapid-eye-movement (REM) sleep, that vivid-dream stage when our eyes race beneath our eyelids like mice under a blanket, is essential to emotional regulation and problem-solving. Slow-wave sleep, our deepest sleep, is essential for repairing our cells, shoring up our immune systems, and rinsing toxins from our brains, thanks to a watery complex of micro-canals called the glymphatic system. We repair our muscles when we sleep. We restore our hearts. We consolidate memories and process knowledge, embedding important facts and disposing of trivial ones. We actually learn when we’re asleep.

Many insomniacs know all too well how nonnegotiably vital sleep is, and what the disastrous consequences are if you don’t get it. I think of the daredevil experiment that Nathaniel Kleitman, the father of sleep research, informally conducted as a graduate student in 1922, enlisting five classmates to join him in seeing how long they could stay awake. He lasted the longest—a staggering 115 hours—but at a terrible price, temporarily going mad with exhaustion, arguing on the fifth day with an imaginary foe about the need for organized labor. And I think of Allan Rechtschaffen, another pioneer in the field, who in 1989 had the fiendish idea to place rats on a spinning mechanism that forced them to stay awake if they didn’t want to drown. They eventually dropped dead.

So these are the kinds of facts a person doing CBT-I has to ignore.

Still. Whether a patient’s terrors concern the present or the future, it is the job of any good CBT-I practitioner to help fact-check or right-size them through Socratic questioning. During her panel at SLEEP 2024, Nowakowski gave very relatable examples:

When you’re struggling to fall asleep, what are you most worried will happen?

I’ll lose my job/scream at my kids/detonate my relationship/never be able to sleep again.

And what’s the probability of your not falling asleep?

I don’t sleep most nights.

And the probability of not functioning at work or yelling at the kids if you don’t?

Ninety percent.

She then tells her patients to go read their own sleep diary, which she’s instructed them to keep from the start. The numbers seldom confirm they’re right, because humans are monsters of misprediction. Her job is to get her patients to start decatastrophizing, which includes what she calls the “So what?” method: So what if you have a bad day at work or at home? You’ve had others. Will it be the end of the world? (When my second CBT-I therapist asked me this, I silently thought, Yes, because when I’m dangling at the end of my rope, I just spin more.) CBT-I addresses anxiety about not sleeping, which tends to be the real force that keeps insomnia airborne, regardless of what lofted it. The pre-sleep freaking out, the compulsive clock-watching, the bargaining, the middle-of-the-night doom-prophesizing, the despairing—CBT-I attempts to snip that loop. The patient actively learns new behaviors and attitudes to put an end to their misery.

But the main anchor of CBT-I is sleep-restriction therapy. I tried it back when I was 29, when I dragged my wasted self into a sleep clinic in New York; I’ve tried it once since. I couldn’t stick with it either time.

The concept is simple: You severely limit your time in bed, paring away every fretful, superfluous minute you’d otherwise be awake. If you discover from a week’s worth of sleep-diary entries (or your wearable) that you spend eight hours buried in your duvet but sleep for only five of them, you consolidate those splintered hours into one bloc of five, setting the same wake-up time every day and going to bed a mere five hours before. Once you’ve averaged sleeping those five hours for a few days straight, you reward your body by going to bed 15 minutes earlier. If you achieve success for a few days more, you add another 15 minutes. And then another … until you’re up to whatever the magic number is for you.

No napping. The idea is to build up enough “sleep pressure” to force your body to collapse in surrender.

Sleep restriction can be a wonderful method. But if you have severe insomnia, the idea of reducing your sleep time is petrifying. Technically, I suppose, you’re not really reducing your sleep time; you’re just consolidating it. But practically speaking, you are reducing your sleep, at least in the beginning, because dysregulated sleep isn’t an accordion, obligingly contracting itself into a case. Contracting it takes time, or at least it did for me. The process was murder.

“If you get people to really work their way through it—and sometimes that takes holding people’s hands—it ends up being more effective than a pill,” Ronald Kessler, a renowned psychiatric epidemiologist at Harvard, told me when I asked him about CBT-I. The problem is the formidable size of that if. “CBT-I takes a lot more work than taking a pill. So a lot of people drop out.”

They do. One study I perused had an attrition rate of 40 percent.

Twenty-six years ago, I, too, joined the legions of the quitters. In hindsight, my error was my insistence on trying this grueling regimen without a benzodiazepine (Valium, Ativan, Xanax), though my doctor had recommended that I start one. But I was still afraid of drugs in those days, and I was still in denial that I’d become hostage to my own brain’s terrorism. I was sure that I still had the power to negotiate. Competence had until that moment defined my whole life. I persuaded the doctor to let me try without drugs.

As she’d predicted, I failed. The graphs in my sleep diary looked like volatile weeks on the stock exchange.

For the first time ever, I did need an antidepressant. The doctor wrote me a prescription for Paxil and a bottle of Xanax to use until I got up to cruising altitude—all SSRIs take a while to kick in.

I didn’t try sleep restriction again until many years later. Paxil sufficed during that time; it made me almost stupid with drowsiness. I was sleepy at night and vague during the day. I needed Xanax for only a couple of weeks, which was just as well, because I didn’t much care for it. The doctor had prescribed too powerful a dose, though it was the smallest one. I was such a rookie with drugs in those days that it never occurred to me I could just snap the pill in half.

Have I oversimplified the story of my insomnia? Probably. At the top of the SLEEP 2024 panel about anxiety and new-onset insomnia, Leisha Cuddihy, a director at large for the Society of Behavioral Sleep Medicine, said something that made me wince—namely, that her patients “have a very vivid perception of pre-insomnia sleep being literally perfect: ‘I’ve never had a bad night of sleep before now.’ ”

Okay, guilty as charged. While it’s true that I’d slept brilliantly (and I stand by this, brilliantly) in the 16 years before I first sought help, I was the last kid to fall asleep at slumber parties when I was little. Cuddihy also said that many of her patients declare they’re certain, implacably certain, that they are unfixable. “They feel like something broke,” she said.

Which is what I wrote just a few pages back. Poisoned, broke, same thing.

By the time Cuddihy finished speaking, I had to face an uncomfortable truth: I was a standard-issue sleep-clinic zombie.

But when patients say they feel like something broke inside their head, they aren’t necessarily wrong. An insomniac’s brain does change in neurobiological ways.

“There is something in the neurons that’s changing during sleep in patients with significant sleep disruptions,” said Eric Nofzinger, who, while at the University of Pittsburgh, had one of the world’s largest databases of brain-imaging studies of sleeping human beings. “If you’re laying down a memory, then that circuitry is hardwired for that memory. So one can imagine that if your brain is doing this night after night …”

We know that the hypothalamic-pituitary-adrenal axis, our body’s first responder to stress, is overactivated in the chronically underslept. If the insomniac suffers from depression, their REM phase tends to be longer and more “dense,” with the limbic system (the amygdala, the hippocampus—where our primal drives are housed) going wild, roaring its terrible roars and gnashing its terrible teeth. (You can imagine how this would also make depressives subconsciously less motivated to sleep—who wants to face their Gorgon dreams?) Insomniacs suffering from anxiety experience this problem too, though to a lesser degree; it’s their deep sleep that’s mainly affected, slimming down and shallowing out.

And in all insomniacs, throughout the night, the arousal centers of the brain keep clattering away, as does the prefrontal cortex (in charge of planning, decision making), whereas in regular sleepers, these buzzing regions go offline. “So when someone with insomnia wakes up the next morning and says, ‘I don’t think I slept at all last night,’ in some respects, that’s true,” Nofzinger told me. “Because the parts of the brain that should have been resting did not.”

And why didn’t they rest? The insomniac can’t say. The insomniac feels at once responsible and helpless when it comes to their misery: I must be to blame. But I can’t be to blame. The feeling that sleeplessness is happening to you, not something you’re doing to yourself, sends you on a quest for nonpsychological explanations: Lots of physiological conditions can cause sleep disturbances, can’t they? Obstructive sleep apnea, for instance, which afflicts nearly 30 million Americans. Many autoimmune diseases, too. At one point, I’ll confess that I started asking the researchers I spoke with whether insomnia itself could be an autoimmune disorder, because that’s what it feels like to me—as if my brain is going after itself with brickbats.

“Narcolepsy appears to be an example of a sleep disorder involving the immune system,” Andrew Krystal, a psychiatrist specializing in sleep disorders at UCSF, told me.

What? I said. Really?

Really, he replied. “There are few things I know of,” he said, “that are as complicated as the mammalian immune system.”

But insomnia-as-autoimmune-disorder is only a wisp of a theory, a wish of a theory, nothing more. In her memoir, The Shapeless Unease: A Year of Not Sleeping, the novelist Samantha Harvey casts around for a physiological explanation, too. But after she completes a battery of tests, the results come back normal, pointing to “what I already know,” she writes, “which is that my sleeplessness is psychological. I must carry on being the archaeologist of myself, digging around, seeing if I can excavate the problem and with it the solution—when in truth I am afraid of myself, not of what I might uncover, but of managing to uncover nothing.”

Armando Veve

I didn’t tolerate my Paxil brain for long. I weaned myself off, returned to normal for a few months, and assumed that my sleeplessness had been a freak event, like one of those earthquakes in a city that never has them. But then my sleep started to slip away again, and by age 31, I couldn’t recapture it without chemical assistance. Prozac worked for years on its own, but it blew out whatever circuit in my brain generates metaphors. When I turned to the antidepressants that kept the electricity flowing, I needed sleep medication too—proving, to my mind, that melancholy couldn’t have been the mother of my sleep troubles, but the lasting result of them. I’ve used the lowest dose of Klonopin to complement my SSRIs for years. In times of acute stress, I need a gabapentin or a Unisom too.

Unisom is fine. Gabapentin also turns my mind into an empty prairie.

Edibles, which I’ve also tried, turn my brain to porridge the next day. Some evidence suggests that cannabis works as a sleep aid, but more research, evidently, is required. (Sorry.)

Which brings me to the subject of drugs. I come neither to praise nor to bury them. But I do come to reframe the discussion around them, inspired by what a number of researcher-clinicians said about hypnotics and addiction during the SLEEP 2024 panel on the subject. They started with a simple question: How do you define addiction?

It’s true that many of the people who have taken sleep medications for months or years rely on them. Without them, the majority wouldn’t sleep, at least in the beginning, and a good many would experience rebound insomnia if they didn’t wean properly, which can be even worse. One could argue that this dependence is tantamount to addiction.

But: We don’t say people are addicted to their hypertension medication or statins, though we know that in certain instances lifestyle changes could obviate the need for either one. We don’t say people are addicted to their miracle GLP-1 agonists just because they could theoretically diet and exercise to lose weight. We agree that they need them. They’re on Lasix. On Lipitor. On Ozempic. Not addicted to.

Yet we still think of sleep medications as “drugs,” a word that in this case carries a whiff of stigma—partly because mental illness still carries a stigma, but also because sleep medications legitimately do have the potential for recreational use and abuse.

But is that what most people who suffer from sleep troubles are doing? Using their Sonata or Ativan for fun?

“If you see a patient who’s been taking medication for a long time,” Tom Roth, the founder of the Sleep Disorders and Research Center at Henry Ford Hospital, said during the panel, “you have to think, ‘Are they drug-seeking or therapy-seeking ?’ ” The overwhelming majority, he and other panelists noted, are taking their prescription drugs for relief, not kicks. They may depend on them, but they’re not abusing them—by taking them during the day, say, or for purposes other than sleep.

Still, let’s posit that many long-term users of sleep medication do become dependent. Now let’s consider another phenomenon commonly associated with reliance on sleep meds: You enter Garland and Hendrix territory in a hurry. First you need one pill, then you need two; eventually you need a fistful with a fifth of gin.

Yet a 2024 cohort study, which involved nearly 1 million Danes who used benzodiazepines long-term, found that of those who used them for three years or more—67,398 people, to be exact—only 7 percent exceeded their recommended dose.

Not a trivial number, certainly, if you’re staring across an entire population. But if you’re evaluating the risk of taking a hypnotic as an individual, you’d be correct to assume that your odds of dose escalation are pretty low.

That there’s a difference between abuse and dependence, that dependence doesn’t mean a mad chase for more milligrams, that people depend on drugs for a variety of other naturally reversible conditions and don’t suffer any stigma—these nuances matter.

“Using something where the benefits outweigh the side effects certainly is not addiction,” Winkelman, the Harvard psychiatrist and chair of the panel, told me when we spoke a few months later. “I call that treatment.”

The problem, he told me, is when the benefits stop outweighing the downsides. “Let’s say the medication loses efficacy over time.” Right. That 7 percent. And over-the-counter sleep meds, whose active component is usually diphenhydramine (more commonly known as Benadryl), are potentially even more likely to lose their efficacy—the American Academy of Sleep Medicine advises against them. “And let’s say you did stop your medication,” Winkelman continued. “Your sleep could be worse than it was before you started it,” at least for a while. “People should know about that risk.”

A small but even more hazardous risk: a seizure, for those who abruptly stop taking high doses of benzodiazepines after they’ve been on them for a long period of time. The likelihood is low—the exact percentage is almost impossible to ascertain—but any risk of a seizure is worth knowing about. “And are you comfortable with the idea that the drug could irrevocably be changing your brain?” Winkelman asked. “The brain is a machine, and you’re exposing it to the repetitive stimulus of the drug.” Then again, he pointed out, you know what else is a repetitive stimulus? Insomnia.

“So should these things even be considered a part of an addiction?” he asked. “At what point does a treatment become an addiction? I don’t know.”

Calvinist about sleep meds, blasé about sleep meds—whatever you are, the fact remains: We’re a nation that likes them. According to a 2020 report from the National Center for Health Statistics, 8.4 percent of Americans take sleep medications most nights or every night, and an additional 10 percent take them on some. Part of the reason medication remains so popular is that it’s easy for doctors to prescribe a pill and give a patient immediate relief, which is often what patients are looking for, especially if they’re in extremis or need some assistance through a rough stretch. CBT‑I, as Ronald Kessler noted, takes time to work. Pills don’t.

But another reason, as Suzanne Bertisch pointed out during the addiction-and-insomnia-meds panel, is that “primary-care physicians don’t even know what CBT-I is. This is a failure of our field.”

Even if general practitioners did know about CBT-I, too few therapists are trained in it, and those who are tend to have fully saturated schedules. The military, unsurprisingly, has tried to work around this problem (sleep being crucial to soldiers, sedatives being contraindicated in warfare) with CBT-I via video as well as an online program, both shown to be efficacious. But most of us are not in the Army. And while some hospitals, private companies, and the military have developed apps for CBT-I too, most people don’t know about them.

For years, medication has worked for me. I’ve stopped beating myself up about it. If the only side effect I’m experiencing from taking 0.5 milligrams of Klonopin is being dependent on 0.5 milligrams of Klonopin, is that really such a problem?

There’s been a lot of confusing noise about sleep medication over the years. “Weak science, alarming FDA black-box warnings, and media reporting have fueled an anti-benzodiazepine movement,” says an editorial in the March 2024 issue of The American Journal of Psychiatry. “This has created an atmosphere of fear and stigma among patients, many of whom can benefit from such medications.”

A case in point: For a long time, the public believed that benzodiazepines dramatically increased the risk of Alzheimer’s disease, thanks to a 2014 study in the British Medical Journal that got the usual five-alarm-fire treatment by the media. Then, two years later, another study came along, also in the British Medical Journal, saying, Never mind, nothing to see here, folks; there appears to be no causal relationship we can discern.

That study may one day prove problematic, too. But the point is: More work needs to be done.

A different paper, however—again by Daniel Kripke, the fellow who argued that seven hours of sleep a night predicted the best health outcomes—may provide more reason for concern. In a study published in 2012, he looked at more than 10,000 people on a variety of sleep medications and found that they were several times more likely to die within 2.5 years than a matched cohort, even when controlling for a range of culprits: age, sex, alcohol use, smoking status, body-mass index, prior cancer. Those who took as few as 18 pills a year had a 3.6-fold increase. (Those who took more than 132 had a 5.3-fold one.)

John Winkelman doesn’t buy it. “Really,” he told me, “what makes a lot more sense is to ask, ‘Why did people take these medications in the first place?’ ” And for what it’s worth, a 2023 study funded by the National Institute on Drug Abuse and published in the Journal of the American Medical Association found that people on stable, long-term doses of a benzodiazepine who go off their medication have worse mortality rates in the following 12 months than those who stay on it. So maybe you’re damned if you do, damned if you don’t.

Still, I take Kripke’s study seriously. Because … well, Christ, I don’t know. Emotional reasons? Because other esteemed thinkers still think there’s something to it?

In my own case, the most compelling reasons to get off medication are the more mundane ones: the scratchy little cognitive impairments it can cause during the day, the risk of falls as you get older. (I should correct myself here: Falling when you’re older has the potential to be not mundane, but very bad.) Medications can also cause problems with memory as one ages, even if they don’t cause Alzheimer’s, and the garden-variety brain termites of middle and old age are bummer enough.

And maybe most generally: Why have a drug in your system if you can learn to live without it?

My suspicion is that most people who rely on sleep drugs would prefer natural sleep.

So yes: I’d love to one day make a third run at CBT-I, with the hope of weaning off my medication, even if it means going through a hell spell of double exhaustion. CBT-I is a skill, something I could hopefully deploy for the rest of my life. Something I can’t accidentally leave on my bedside table.

Some part of me, the one that’s made of pessimism, is convinced that it won’t work no matter how long I stick with it. But Michael Irwin, at UCLA, told me something reassuring: His research suggests that if you have trouble with insomnia or difficulty maintaining your sleep, mindfulness meditation while lying in bed can be just as effective as climbing out of bed, sitting in a chair, and waiting until you’re tired enough to crawl back in—a pillar of CBT‑I, and one that I absolutely despise. I do it sometimes, because I know I should, but it’s lonely and freezing, a form of banishment.

And if CBT-I doesn’t work, Michael Grandner, the director of the sleep-and-health-research program at the University of Arizona, laid out an alternative at SLEEP 2024: acceptance and commitment therapy, or ACT. The basic idea is exactly what the name suggests. You accept your lot. You change exactly nothing. If you can’t sleep, or you can’t sleep enough, or you can sleep only in a broken line, you say, This is one of those things I can’t control. (One could see how such a mantra might help a person sleep, paradoxically.) You then isolate what matters to you. Being functional the next day? Being a good parent? A good friend? If sleep is the metaphorical wall you keep ramming your head against, “is your problem the wall?” Grandner asked. “Or is your problem that you can’t get beyond the wall, and is there another way?”

Because there often is another way. To be a good friend, to be a good parent, to be who and whatever it is you most value—you can live out a lot of those values without adequate sleep. “When you look at some of these things,” Grandner said, “what you find is that the pain”—of not sleeping—“is actually only a small part of what is getting in the way of your life. It’s really less about the pain itself and more about the suffering around the pain, and that’s what we can fix.”

Even as I type, I’m skeptical of this method too. My insomnia was so extreme at 29, and still can be to this day, that I’m not sure I am tough enough—or can summon enough of my inner Buddha (barely locatable on the best of days)—to transcend its pain, at once towering and a bore. But if ACT doesn’t work, and if CBT-I doesn’t work, and if mindfully meditating and acupuncture and neurofeedback and the zillions of other things I’ve tried in the past don’t work on their own … well … I’ll go back on medication.

Some people will judge me, I’m sure. What can I say? It’s my life, not theirs.

I’ll wrap up by talking about an extraordinary man named Thomas Wehr, once the chief of clinical psychobiology at the National Institute of Mental Health, now 83, still doing research. He was by far the most philosophical expert I spoke with, quick to find (and mull) the underlayer of whatever he was exploring. I really liked what he had to say about sleep.

You’ve probably read the theory somewhere—it’s a media chestnut—that human beings aren’t necessarily meant to sleep in one long stretch but rather in two shorter ones, with a dreamy, middle-of-the-night entr’acte. In a famous 2001 paper, the historian A. Roger Ekirch showed that people in the pre-electrified British Isles used that interregnum to read, chat, poke the fire, pray, have sex. But it was Wehr who, nearly 10 years earlier, found a biological basis for these rhythms of social life, discovering segmented sleep patterns in an experiment that exposed its participants to 14 hours of darkness each night. Their sleep split in two.

Wehr now knows firsthand what it is to sleep a divided sleep. “I think what happens as you get older,” he told me last summer, “is that this natural pattern of human sleep starts intruding back into the world in which it’s not welcome—the world we’ve created with artificial light.”

There’s a melancholy quality to this observation, I know. But also a beauty: Consciously or not, Wehr is reframing old age as a time of reintegration, not disintegration, a time when our natural bias for segmented sleep reasserts itself as our lives are winding down.

His findings should actually be reassuring to everyone. People of all ages pop awake in the middle of the night and have trouble going back to sleep. One associates this phenomenon with anxiety if it happens in younger people, and no doubt that’s frequently the cause. But it also rhymes with what may be a natural pattern. Perhaps we’re meant to wake up. Perhaps broken sleep doesn’t mean our sleep is broken, because another sleep awaits.

And if we think of those middle-of-the-night awakenings as meant to be, Wehr told me, perhaps we should use them differently, as some of our forebears did when they’d wake up in the night bathed in prolactin, a hormone that kept them relaxed and serene. “They were kind of in an altered state, maybe a third state of consciousness you usually don’t experience in modern life, unless you’re a meditator. And they would contemplate their dreams.”

Night awakenings, he went on to explain, tend to happen as we’re exiting a REM cycle, when our dreams are most intense. “We’re not having an experience that a lot of our ancestors had of waking up and maybe processing, or musing, or let’s even say ‘being informed’ by dreams.”

We should reclaim those moments at 3 or 4 a.m., was his view. Why not luxuriate in our dreams? “If you know you’re going to fall back asleep,” he said, “and if you just relax and maybe think about your dreams, that helps a lot.”

This assumes one has pleasant or emotionally neutral dreams, of course. But I take his point. He was possibly explaining, unwittingly, something about his own associative habits of mind—that maybe his daytime thinking is informed by the meandering stories he tells himself while he sleeps.

The problem, unfortunately, is that the world isn’t structured to accommodate a second sleep or a day informed by dreams. We live unnatural, anxious lives. Every morning, we turn on our lights, switch on our computers, grab our phones; the whir begins. For now, this strange way of being is exclusively on us to adapt to. Sleep doesn’t much curve to it, nor it to sleep. For those who struggle each night (or day), praying for what should be their biologically given reprieve from the chaos, the world has proved an even harsher place.

But there are ways to improve it. Through policy, by refraining from judgment—of others, but also of ourselves. Meanwhile, I take comfort in the two hunter-gatherer tribes Wehr told me about, ones he modestly noted did not confirm his hypothesis of biphasic sleep. He couldn’t remember their names, but I later looked them up: the San in Namibia and the Tsimané in Bolivia. They average less than 6.5 hours of sleep a night. And neither has a word for insomnia.

This article appears in the August 2025 print edition with the headline “American Insomnia.”

Focus on the Things That Matter

2024-11-07T09:31:51-05:00

This article was updated on November 7 at 12:49 p.m.

Although I came of age at a moment when politicians on both sides of the aisle were amenable to hearing each other’s ideas, we’re now at a juncture where each side seems more or less unpersuadable, unbudgeable, at least on the big stuff. The same goes for a substantial wedge of the public. We’re all rooted in our own media ecosystems, standing on different epistemological substrates, working with different understandings of what we think—know—is true.

The 2020 election was stolen; it wasn’t stolen. Immigrants are what make America great; immigrants are the problem. Inflation is going down; eggs cost too much. (They do cost too much, though for reasons that probably aren’t Joe Biden’s fault.) Abortion is an issue over which there really may be no compromise—this is life we’re arguing over. Life! What could be more fundamental than that?

I could go on.

And Democrats, just among themselves, are already arguing over why Tuesday night’s election turned out the way it did. How I loathe this part, all the gladiatorial intraparty bedlam: Racism was the main cause. Misogyny was the main cause. The intense estrangement and demoralization of the white working class, that’s what did in the Democrats—not only did workers see their jobs slip away, but they were told that they were bad people when the words white supremacy entered the liberal lexicon, the mainstream media, and the vocabulary of many progressive politicians. All the talk about trans rights did in the Democrats—why do they talk about gender-affirming care (and use that phrase) when parents have legitimate anxieties about their 18-year-olds who want top surgery? “Defund the police” did in the Democrats—don’t many people in dodgy or dangerous neighborhoods want cops? Elon Musk and Joe Rogan were the problem. The cultural conservatism of Hispanics was the problem. The failure to recognize illegal immigration and inflation and crime was the problem. Joe Biden’s mental decline was the problem; his not coming clean about it was the problem. The result was inevitable, because center-left parties are folding around the globe like beach chairs. Ad infinitum, ad nauseam.

[Listen: Are we living in a different America?]

So the question becomes: How do we move forward without venom, without looking at strangers—and people within our own party—as potential enemies? As people who, if given their druthers, would undo the American project and destroy its values and make this country profoundly unsafe? (Which is something, by the way, that both sides believe.)

My answer would be something pretty basic but at least achievable—a step the media can least try to take, that local leaders can partially achieve, but that we, as citizens, can most easily do ourselves: We can focus on our vulnerabilities. We can choose to talk about and pass bills to address and continually emphasize the human hardships that bind us together. We all experience grief. We all have disabled relatives in our family whom we worry about. We all need friendship and mourn the relationships that have faded away. We all get cancer or some other disease that makes us reckon with our own mortality. We get chronic illnesses; our bodies fail.

These five subjects are exactly what I’ve written about since joining The Atlantic in 2021. Suddenly, in my 50s, I found myself unconsciously drifting toward existential matters, because they started looming like smoke. What gives life meaning—this is what matters to me now. If not now, in life’s final innings, then when?

And we share so many other common struggles. Worries about our kids, if we have them. The trials of eldercare. The comforts of religion, if you’re religious, or the values and belief systems and structures that guide you if you’re not. We all want love. We all want fulfillment. Married people all know how hard marriage is, if they’re in one, and divorced people know how hard divorce is, if they’re in the midst of that.

Most people instinctively lean into these topics.

Last year, I wrote about my intellectually disabled aunt, who had the catastrophic misfortune of being institutionalized in 1953, when she wasn’t yet 2. Along the way, I met a woman, Grace Feist, whose child had the same condition but the good fortune to be born 60-plus years later and therefore lead a far better life, a good life. The times had changed, sure, but her mother was a roaring outboard motor of determination when it came to supporting her girl, learning sign language and building what amounted to a Montessori school in her own home.

She was a devoted Christian who told me repeatedly how much she loved God; I think of the universe as a big-bang-size, multidimensional expanse of indifference. Yet I am psychotically attached to her. In fact, I fell instantly in love—she is warm and generous and funny and partial to silver flip-flops even when it’s 20 degrees out, because she’s used to the cold, having spent years freezing her ass off working security at an oil field in North Dakota, where she got to see the northern lights.

When we came around to discussing politics, she mentioned that she’d voted for Trump in 2020. I had not. But her reaction, almost immediately, was to tell me that she thought Republicans had lost their heads about masks—Was it that big a deal to wear one? Really?—and that she herself always wore one, because her youngest child had immunological issues. And I responded by telling her that I thought the Democratic policy positions on trans issues were excessive and ignored the legitimate concerns of parents, who didn’t want their adolescents making precipitous and irreversible decisions about their body when other factors could so often be at play. (To my fellow Democrats: Yes, there are kids who absolutely know they’re trans—I think of Jan Morris, who realized this at 3 or 4 while sitting under a piano—but I worry about the teenagers who suddenly come to this same conclusion when they hadn’t previously felt this way.)

[Read: How Trump neutralized his abortion problem]

Our impulse was to find consensus. Most people’s ideas about politics are pretty nuanced.

And that assumes they’re thinking about politics in the first place. Many people—27 percent, according to a 2023 Gallup poll—just don’t give that much of a shit. (And 41 percent follow national political news only “somewhat closely.”) It’s not part of their thinking in their everyday life. Grace and her husband, a lovely and quiet guy named Jerry, are far more preoccupied with other matters. I told them I’d just written a story about Steve Bannon, the one and only substantial feature I’ve written about planet Trump; neither had heard of the guy.

Grace and I were tied for life, in spite of our differences. Her child, my aunt, our love and pained concern for them both—these were far deeper connections. And yes, I know: how hokey and Pollyannaish. Liberals will likely say: We have work to do. Trump is dangerous. We’re faltering on the precipice of catastrophe, if we haven’t already backwards-tumbled into the brink. And yes, I agree. We do have work to do; we should be terrified; we should be mourning the country that was. But more than half the nation doesn’t feel that way. And focusing on the shared things, the so-very-basic things, is the one thing within our control. They’re real. They matter. They’re the stuff of life.

The Art of Survival

2024-05-15T06:00:00-04:00

Photographs by Heather Sten for The Atlantic

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The first time I met Suleika Jaouad, I fell in love with her a little. This, I would soon learn, is a fairly common reaction to Suleika: Everyone who meets her falls in love with her a little. It was 2015, and Suleika was just 26 years old—buoyant, finally off maintenance chemo, and radiant on account of it, her thick brown hair arranged in a boop-a-doop pixie cut. We were attending the same conference, and her boyfriend, a young New Orleans musician named Jon Batiste, was there too. The couple had an irresistible backstory: They first met at band camp as teenagers (she in Birkenstocks, he with a mouthful of train-track orthodonture), and then reconnected romantically as adults. They made for a captivating pair, though the weather systems surrounding them couldn’t have been more different: She was enveloping and collected people; he was shy and abstracted, as if involved in a long, vigorous conversation with himself.

At some point, I was told that Jon was going to be the new bandleader on The Late Show With Stephen Colbert. I remember thinking, Cool, but not much more, having no idea what kind of genius he was. Yet one knew from just looking at them that Jon and Suleika were destined for an unusual life. They were sophisticated and great-looking, ambitious and disciplined, adoring and mutually invested in each other’s success. Suleika had written a column for The New York Times called “Life, Interrupted” about the brutal challenges of living with acute myeloid leukemia, had beaten the disease, and was now doing advocacy work and writing a memoir. Jon would soon be appearing nightly on our television sets and continuing to make music of his own.

They are married now. He’s the more famous of the two, with an Academy Award, a Golden Globe, and five Grammys; he’s also the focus of the documentary American Symphony, which earned him a 2024 Oscar nomination for Best Original Song. (Additionally, Jon is The Atlantic’s first music director.)

But Suleika has her own passionate following. I recently told a friend that I was writing about her, and she started burbling with envy, saying how much she loved The Isolation Journals, Suleika’s Substack newsletter; how much she loved her memoir, Between Two Kingdoms; how certain she was that the two of them would be fast friends if only they could meet in real life. I didn’t have the heart to say: Well, yes, I’m sure that’s true, you guys probably would be friends, but I’m also fairly certain that her hundreds of thousands of readers and quarter-million-plus Instagram followers feel the exact same way.

[Suleika Jaouad: I survived cancer, and then I needed to remember how to live]

That’s the thing about Suleika: She’s like O-negative blood, compatible with any type. The awful irony is that almost no one’s lifeblood is compatible with Suleika’s, at least not in the most meaningful sense. Because Suleika had not, in fact, left her cancer behind her. In 2021, she spun out of remission, requiring a second bone-marrow transplant. But her only compatible donor was her brother, Adam, and it was his bone marrow that her cancer cells had managed to outfox in the first place. That means she’ll very likely need a third transplant in the years ahead, ideally from someone else. But there is no one else. Yet.

When Suleika was first diagnosed, in 2011, her doctors put her odds of survival at 35 percent. I asked her in October what her odds are now. “Less than that,” she said slowly, though she added that her prognosis could change if the science does, or if a new suitable donor materializes.

Suleika likes to say that “survival is a creative act,” which has a slightly peculiar ring to it, at once too tidy and too obscure. But what she means, really, is: Living with the implicit or explicit threat of cancer for your entire adulthood forces you to strain the limits of your imagination to find life’s fulfillments. She has surrounded herself with loyal, loving friends. She has made her environments warm and stylish. (Her Brooklyn brownstone was recently featured in Architectural Digest.) But most important, she has made a daily practice of converting pain into art. (She’s fond of quoting the poet Louise Glück: “Writing is a kind of revenge against circumstance.”) Between Two Kingdoms spent 22 weeks as a New York Times best seller. This summer, she will have her first art exhibition, inspired by the watercolors she did in the hospital during her second transplant. She has a contract for two more books, one a compendium of writing prompts and meditations on journaling, the other a collection of her paintings and essays.

The self-help aisles are heaving with advice about how to be happy. But it’s one thing to read such guidance; it’s another to actually live it. Yet at 35, Suleika is sharing with her readers how she’s trying to do the hardest thing, even if it’s the most basic thing: wrench meaning from our short time here.

A brief confession before we go any further. I had a meta-motive for wanting to sit down with Suleika: When our interviews began, I was on month 16 of long COVID. There’d be days when I was too dizzy to sit, let alone stand, and my head would judder and vibrate like a lawn mower if I started to walk. Suleika was the one person I knew I could interview while lying down.

I was all too aware that there was an existential gap in our suffering, but I still wondered if, from observing her, I’d learn something about how to cope, just as thousands of other physically and spiritually broken people had. She’d figured out how to stop resisting her illness, spending many productive hours from bed, hadn’t she? Whereas I was still in an iron mode of resistance, braying at the gods.

During an extended hospital stay for her second bone-marrow transplant, in February 2022, Suleika took up painting. (Kate Sterlin)

It’s easy to miss Jon and Suleika’s home in the Delaware River Valley. It is also easy, once you find it, to mistakenly believe that it is inhabited by hobbits. They live in a compact, cheery farmhouse, the walkway lined with solar-powered lanterns, the grounds checkered with wild shrubs and pyramids of gourds. This is where the couple retreated during the pandemic, and it is where I went the first night I had dinner with Jon and Suleika, along with four of their friends. The atmosphere at the table was relaxed and festive, and everyone was almost unnaturally attractive, like castoffs from a rom-com that never went into production. After dinner, Jon took a seat at the piano in the living room, and one of his friends, the saxophonist and mathematician Marcus Miller, joined him. Their improvising was exactly as great as you’d imagine. Crazier still? Everyone acted like it was no big deal. To me, it was a penthouse scene in a Noël Coward play; to them, it was a Monday.

The next morning, I opened my phone to reexperience my favorite moment of the evening. We are all still eating dinner. Jon has called up a song on his phone from the gospel artist JJ Hairston’s Not Holding Back, one of two featuring Pastor David Wilford. Jon is not just luxuriating in it; he’s doing that thing, that Aeolian-harp thing, where he lets the music ripple through him, practically becoming it. He’s involved in some dialogue with Marcus about it too, one that’s primarily gestural, marveling at all the choices Hairston and Wilford made, chuckling at them, nodding, pointing, and exuberantly mugging: Jon fans himself as if he’s an overheated lady at church; he mock-plays along on an imaginary piano; he stomps his foot; he jumps and hops; he opens his eyes wide and punctuates every few bars with “Ohhhhh!”

“We gotta start it back from the beginning!” Jon cries, holding his hand up. And he replays the song.

“OHHHH!” Jon whoops.

You’re gonna live …

You’re gonna live …

You’re gonna live …

You’re gonna live …

You’re gonna live …

to see it happen.

(Jon fans himself.)

You’re gonna live … to seeeeeeeeee it happen.

I said live live live live live!

(Jubilant piano riff here, which Jon pantomimes with a flourish.)

Live live live live live!

Jon is now singing to everyone at the table, pointing at us, serenading us with: “You’re gonna live … to seeeeeeeeee it happen.”

“I don’t know what you’re going through,” Pastor Wilford sings.

“But whatever it is—” Marcus’s fiancée says, spontaneously.

“—I’m gonna live,” Suleika replies.

Only then did I notice the lyrics.

I’d heard them at the time, but they hadn’t really registered.

She’s going to live: a prediction, a command, a dearly held wish.

Suleika in her Brooklyn studio, with some recent works in progress (Heather Sten for The Atlantic)

A chilly Monday morning in Brooklyn this past October. I meet Suleika at her brownstone at 7 a.m. Her left eyelid has been drooping for months, and her doctors want an MRI of her brain to rule out anything ominous. As we head off to the brand-new Brooklyn arm of Memorial Sloan Kettering, she pulls on a giant overcoat with a Basquiat design. “My hospital jacket,” she explains. She especially loved wearing it after her hair and eyebrows had fallen out. “Instead of looking at me, people would look at my coat.”

Our Uber pulls up in front of Sloan Kettering, and I sit in the waiting room. After about 45 minutes, Suleika emerges. I ask how it went. The usual clanging and banging, she says. “The story I told myself this morning is that I was in an avant-garde nightclub, and the band playing was called the Woodpecker Collective.”

Suleika’s cancer started, as she wrote in Between Two Kingdoms, with an itch. It was a tenacious itch, one that originated on the tops of her feet and gradually coiled up her legs. Then came the naps. Naps begetting naps begetting more naps. But this was 2010, Suleika’s senior year at Princeton, and everyone was tired their senior year, right? She powered her way through with energy drinks, Adderall, and the occasional line of coke.

That fall, Suleika got a tiny furnished apartment in Paris, went to work as a paralegal, and was soon joined by her then-boyfriend. For a few months, life was grand. But she was still tired, so tired, and she kept getting infections that drove her to the local health clinic. On the day she finally dragged herself to the American Hospital of Paris, she fainted on the sidewalk. The doctors tested her for everything “from HIV to lupus to cat scratch fever,” she wrote. But never leukemia.

Suleika stayed in the American Hospital of Paris for a week, buoyed by fresh croissants and steroids. But shortly after being discharged, she was back, her mouth covered in sores, her complexion “blue-gray, like dead meat.” The doctor told her that if her red-blood-cell count got any lower, she wouldn’t be allowed to board an airplane. She flew home. Two weeks later, she received her diagnosis.

In 2021, when she feared she had relapsed, Suleika’s medical team didn’t recommend doing a bone-marrow biopsy, even though her blood counts had been dropping for two straight years and she’d been feeling depleted. There were plausible explanations, of course: She’d had Lyme disease and a host of infections; she was, as always, working without cease. But ultimately, Suleika had to demand a biopsy, and she likely wouldn’t have gone through with it if her friend, the writer Elizabeth Gilbert, hadn’t cleared her schedule to accompany her.

“I get there, and they’re like, ‘We don’t have to do this. We’re just doing this to ease your anxiety,’ ” Suleika tells me. “And I felt so embarrassed, like I was being melodramatic.” Women: so high-strung, so fluttery.

Suleika could go on about the tar pit of biases that lurks beneath her medical encounters. At 22, for instance, she wasn’t told by a single doctor that her treatments would likely leave her infertile; she found out on the internet (and quickly harvested her eggs). Nor did she know that her leukemia protocols would shunt her into menopause; her fellow female patients had to tell her. And certainly no one told her that she had multiple options for mitigating her pain; she had to learn about that from her younger friends in the pediatrics ward.

“Why can’t we apply the same principles that we do in pediatrics to adult care?” she asks me. “Small things, like putting on numbing gel for accessing ports.” Or big things, like biopsies. They’re positively medieval procedures, with a long, wide needle boring deep into the core of your pelvis. Kids get them under sedation. Adults typically receive only a local anesthetic. During her 2021 biopsy, it took the doctor four tries to get what she needed. Suleika bit down so hard on her hand that it bled.

“It was the grisliest thing I’ve ever seen,” Gilbert told me. “It was like a paper punch going through bone.”

Now, for her biopsies, Suleika asks to be knocked out.

It is tempting to look at Suleika’s illness as an origin story, the thing that forced her to live an exceptional life. But another way to think about it is that Suleika is an exceptional person to whom illness happened. Speak with her friends, and you get the sense that she has always lived her life like the rest of us, but in a much larger font.

When Suleika falls in love, she falls ferociously in love; with female friends, she’s the queen of the grown-up sleepover and intimate discussion. Her intensity revealed itself early. In fourth grade, she started the double bass, and by the time she was 14, she was practicing five hours a day. In 11th grade, she was rising at 4 a.m. each Saturday to commute to Juilliard from her home in upstate New York. At Princeton, she also played in the orchestra, but almost no one knew about it, because her life already looked so full. Lizzie Presser, her closest friend, remembers being at a costume party when Suleika abruptly turned to her and said, “Shit, I’m late.”

Late?

She had to be onstage with the Princeton University Orchestra in a matter of minutes.

“She never talked about playing,” Presser told me. But they left the party, and Presser went to the balcony of the main campus auditorium. “The curtain comes up, and there’s Suleika in the center, in a white flapper dress that barely covered her thighs, and she’s in the role of principal bass—flanked by men in tuxes! Surrounded by them like a flock of birds.”

After Suleika was finally diagnosed with cancer, roughly a year after graduation, she got very, very sick, and to make her better, her doctors had to make her sicker, poisoning her with what they hoped would be enough chemotherapy to drive her leukemic blasts below 5 percent, a requirement for receiving a bone-marrow transplant. The process took nearly a year.

For a few months, she stared bleakly at the television, watching episodes of Grey’s Anatomy. She tried reading cancer memoirs, but most of them disgusted her, with their tyrannical emphasis on grit and story arcs ending in triumph. “At that point, I was going into bone-marrow failure,” she says. “I frankly didn’t think I was going to make it to transplant. So reading those stories sort of felt like a middle finger.”

Yet she always kept a journal. Eventually, that journal became a blog, and one of her blog entries became a story in HuffPost and earned her a call from an editor at The New York Times. Sensing that her time was now limited, Suleika found herself asking, at 23, if she could have her own weekly column about what it was like to be a young person with cancer—oh, and could it have an accompanying video component too?

The series would win her an Emmy.

Suleika’s column became a phenomenon, speaking to a far greater range of people than she ever imagined. She heard from a senator’s wife who was struggling with fertility issues, a high-school teacher in California who’d lost a son, a prisoner in Texas who was trapped on death row. Everyone seemed to have a shame-and-pain part of themselves, or an unreconciled sadness, a private perdition.

In April 2012, she underwent a bone-marrow transplant, and a few months later, her doctors told her it seemed to be working, but cautioned that it would be many months more before they knew for certain. She spent the next two years mainlining a toxic slurry of maintenance chemo, which left her feeling wretched, exhausted, seasick. When the treatments were finished, she realized that she no longer had any idea how to live among the well. So she cooked up an ambitious project for herself, deciding that she and her dog would make a 15,000-mile, 33-state loop around America, with the aim of visiting many of the correspondents who’d moved or inspired her.

It should be noted at this point that Suleika did not yet have a driver’s license.

That trip became the second half of her memoir, which became one of the best modern chronicles of cancer and its aftermath, a broad-spectrum rendering of illness’s many physical and psychological hues. (Especially the fury. God, how I loved the parts about the fury.) In a review on Instagram, the author Ann Patchett went so far as to say that she might not have had to write Truth & Beauty, her stunning book about her friend Lucy Grealy, had Suleika’s book already existed.

Jon and Suleika at an artists’ residency in 2018. They first met as teenagers at band camp, then reconnected years later. (Lise-Anne Marsal / Trunk Archive)

In the years since, Suleika has continued to write, both essays and reportage. (An article she did for The New York Times Magazine about prison hospice was especially good.) She made dogged but unsuccessful efforts to get her Texas prison correspondent off death row. And she has built a variety of communities, both virtual and embodied.

She originally purchased her home in the Delaware River Valley, for example, to be among an enclave of artists and writers who had already settled there, but she has also since befriended the locals, including her neighbor Jody, a building-trades guy with four missing fingers (childhood accident) and a business card that says I’m 60. I know shit. Call me. In Brooklyn, Suleika lives within a couple blocks of Lizzie Presser, but she also socializes with Presser’s mother, sometimes independently, and she’s become so close to the couple next door that she now plans to build a walkway between her back terrace and theirs.

And Suleika has magicked an entire community into existence with The Isolation Journals, a virtual salon designed to help readers access their own creativity when the slings and arrows of outrageous fortune have punctured their lives. Hatched during the third week of the pandemic (Suleika reckoned she knew a thing or two about the unnatural rationing of human contact), the newsletter offers writing prompts, video discussions with artists about the creative process, and reflections on how to focus on the good while acknowledging the terrible.

Suleika discovered that she’d tapped into a deep human need. Her Substack now has more than 160,000 subscribers. When she informed them in December 2021 that her cancer had returned, she received hundreds of care packages and old-fashioned letters in the first week alone.

During her relapse, Suleika startled everyone with yet another reinvention, declaring, after completing her first watercolor, that she was going to be a painter. “It seemed,” her friend Carmen Radley told me, “like it came out of nowhere.”

But it both did and didn’t. Suleika tends to live in generative mode; that’s her reflex. Part of the reason she took up painting was because she was on such a potent drip of psychoactive medication to subdue her pain that it blurred her vision too much to write. (A combination of ketamine and fentanyl. At one point, she hallucinated a menacing French child named George.) Her paintings from Sloan Kettering have a visceral, fantastical quality, usually featuring some colorful mix of animals and her ravaged body threaded with tubes. She likes how wild and imprecise watercolor is, how improvisational, so different from the careful calibration of writing. It’s an adventure in “happy accidents.”

In the late fall, during an event at Princeton, she was asked by an audience member what advice she’d give to someone who was hesitant to mine their emotional reserves to create something.

“Give yourself permission to be a bad artist,” she said.

I’m back at Suleika’s house in the Delaware River Valley. She greets me at the door and shows me into the kitchen, where on the counter I see a rainbow box of pills. Inside is a monster’s miscellany of antivirals and antiemetics, antibiotics and immunosuppressants—and she’s not even doing chemotherapy, in defiance of her doctors’ wishes. This is the minimum that a transplant patient like Suleika requires.

Suleika and I start chatting on her couch in the living room. At some point, Jon, who’s been fussing in his music studio, pads into the room carrying three books, one so corpulent, it looks like it might bust its own spine. It’s David J. Garrow’s 1,472-page volume about Barack Obama.

“What do you think?” he asks me.

I tell him I haven’t read it and therefore cannot offer an opinion.

He gives a sly smile. “Oh yes, you can.”

What to make of Jon? At first, he terrifies me. He plays 12 instruments, the bulk of which he taught himself. He’s a man of unflagging Christian faith, pure and indivisible: You sense that he’s living for a higher and more serious purpose, faithfully reading scripture, never indulging in caffeine or drugs or alcohol. But most striking is his magpie creativity, his hungry and wayfaring brain. For a while, I worried I was boring him.

Beyond that, Jon is often hard to read, and he’s a person who tests a writer’s descriptive powers. What you really long for when you’re near him is the accompaniment of sound effects, audiotape, videotape; without them, it’s almost impossible to give the full measure of the man. He talks to you slightly sideways, his body angled away from you at 45 degrees. When he’s energized, he doesn’t jump so much as boing. He’s a mesmerizing combination of gnomic insights and probing questions, of silences and sudden joyous yowls (“Yeaaaaaaaahhhhhh,” “Woooooooo,” etc.).

[Read: Jon Batiste on the powerful tune that drives “The Battle Hymn of the Republic”]

Suleika mentions that Jon spent forever lugging around a box set of Stephen Sondheim lyrics. I ask if he knew Sondheim. Turns out that he not only knew him, but also corresponded with him until he died—and did a special arrangement of two pieces from Assassins for him for his birthday.

“Is there a recording of it somewhere?” I ask.

“Yeah.”

“Where?”

“On my phone!” Sure. Because we all keep private birthday gifts to Stephen Sondheim on our phone. “You want to hear it?”

Not long after that, I become relaxed around Jon. The turning point arrives when Suleika briefly steps outside with their dogs. I confess that in the face of other people’s suffering, I sometimes become a stammering stumblebum. How does he always seem to know the right thing to say to Suleika?

“It’s like music, to say the right thing,” he says. Then a long pause, even by Jon standards. “It requires”—another pause—“being attuned to the moment. And the person. And yourself all at once.” A third pause. “It’s really less about the right or wrong thing to say—or to play. Because people feel what you’re saying more than hear what you’re saying.”

His phone rings. He goes outside to take the call.

In that moment, it dawned on me: Jon and Suleika are both emotional seismographs, keenly aware of other people’s sensitivities and vulnerabilities. They’re just outfitted with different drums.

“That’s a common misconception about Jon—that he’s in his own world, that he’s lost in the music in his mind,” Suleika says. “But Jon sees, notices, everything. Everything. He can sense when I’m anxious even when I don’t realize I’m anxious.”

And honestly, I should have known this before, based on Matthew Heineman’s American Symphony. It’s a beautiful film, following a co-occurring high and low in the couple’s life in 2022, with Jon reaching the pinnacle of his career—nominated for 11 Grammy awards, hard at work on an original piece of music to be performed at Carnegie Hall—at just the same moment that Suleika is vividly relapsing. You see Jon tenderly shaving Suleika’s head; you see the two of them playing a version of Simon Says, with him mirroring her every movement as she makes her way down a hospital hallway, yoked to an IV pole.

He takes the “in sickness and in health” part of his job extremely seriously. Jon proposed 24 hours after Suleika discovered that she’d relapsed.

But when Suleika is well, she’s the one who makes Jon’s life possible. Until he began dating Suleika, Jon lived like a nomad, touring with his band around Europe and the U.S., usually in a rented van, and staying in run-down hotels. His apartment was a dragon’s nest of, in Jon’s words, “papers, music, manuscripts, gifts, awards, clothes, pawn-shop instruments, laptops.” The first time Suleika spent the night, a spider bit her on the eye.

Whereas Suleika has an abiding urge to nest, having lived on three continents with her Swiss mother and Tunisian father by the time she was 12 years old. (And she always lived modestly—her mother came from a tiny village and her father’s parents could not read or write.) Her focus on home and friendship has provided Jon a bulwark against the devouring demands of fame. If it weren’t for Suleika, it’s also possible that he’d work until he expired. He has the nocturnal rhythms of a bat.

Jon wanders back inside again. The call has clearly keyed him up. He beelines for the couch and climbs on top of Suleika, planting himself face down in her lap. “Mmmmmmmm,” he moans. “I’m an overstimulated introvert.”

“I think one of my roles in Jon’s life is to soothe his nervous system.”

If you hadn’t met Suleika, I ask, what would your life look like?

“I don’t know,” he says. He thinks. “I’d be going too fast for the machine.”

So she’s a brake pedal?

“More elegant than that. A brake pedal ? No.”

Sorry, I say. I can’t do machine metaphors.

“She’s the software that calibrates the machine,” he explains, his face still buried in her lap.

Whenever Suleika is at her lowest, she always manages, somehow, to make her most creative leaps. During her last transplant, even when she was at her most despairing, even when she was as close to death as she thinks she’s ever come—her throat too scorched to speak, her body simmering with three different infections—she summoned the strength to prop herself up and paint at 2 a.m., when she was seized by an image of a marionette being borne away by birds. She kept paper and watercolors right next to her bed.

But me? Even with a far more benign illness, I do no such thing. I have not taken up knitting, or making collages, or writing fiction or doing macramé or conjuring an online haven for long-haulers. Instead, I’m just sad and stuck. How, I ask her one day, has she managed to make such a productive life for herself, in spite of all the shit? It requires so much energy.

“It takes a lot more energy to do battle with demons,” she points out. Meaning one’s own depression.

Yes, I say, but that’s a rational answer. Demons aren’t rational. Some of us feel like we’re made of those demons. I would currently say I am 86 percent demons.

“I think I had to get to a place where my sense of despair—and boredom, honestly—was so great, I had to do something,” she says. “That sent me on this research project about all the different bedridden artists and writers and musicians throughout history who’d figured out creative work-arounds.” Like Frida Kahlo. “Her mom gifted her a sort of lap easel and attached a mirror to the canopy of her bed.” Or Henri Matisse, she adds, who, when he was old and infirm, affixed a bit of charcoal to the end of a long stick and drew studies for the Chapel of the Rosary on the walls of his apartment, all while lying in bed.

But Suleika recognizes she’s had many years of practice when it comes to living horizontally. “I can also understand,” she tells me, “as I’m saying all this, if your response is a bit like, Fuck you. Nothing about this feels good or will ever feel good or can ever be useful. I’ve been in that place too.”

Like binge-watching Grey’s Anatomy, for instance. Which is about where I’m at, I tell her.

“I sometimes worry that I’ve become the kind of person who makes people who are not ‘suffering well’ feel like shit,” she confesses.

Suleika makes her living in the first person, actively writing about her life and pressing “Send” each week. But at some point, I begin to wonder whether there’s another Suleika, a more private Suleika, tucked inside the public one. Her readers now expect her to be a certain kind of inspirational person. Does she even have the freedom to maneuver through the world without being that woman?

It took time for me to realize that Suleika is sometimes selective about what she shares.

Here is one part that we do not always see, for instance: how much she suffers. Those high-gigawatt drugs she takes can have brutal side effects, and she’s routinely subjected to torturous procedures.

“Suleika is who she is on the page,” Elizabeth Gilbert said. “But that identity is flanked by two characteristics that I’m not sure anyone understands the extent of.” One is that she’s got a punk, rebellious streak. But the other “is how fucking tough she is,” Gilbert said. “How fucking stoic. She’s a Marine.” After that excruciating biopsy, she and Suleika went out to dinner. “If that had been me, you wouldn’t have seen me for a week.”

Some discomfort is so routine for Suleika that she never bothers to discuss it. In January, shortly after she appeared on the Today show with Jon to promote American Symphony, I told her she did great.

“I projectile-vomited in broad daylight in the streets of New York City afterwards,” she replies, with startling matter-of-factness. “Right before my next thing on Park Avenue.”

She … what? I try to imagine Suleika, made up for television and in a blazer of elegant blue velvet, vomiting on the Upper East Side.

“I have vomited in public more times than I can count,” she says. “I’m always trying to find a private spot between two parked cars or behind a tree. Often I don’t get there.”

So: Chronic nausea barely rates a mention in her work. Also underdiscussed: Suleika is always and forever tired. But how many times can you write that you are always and forever tired? Yet she is, with only a few good hours a day, usually. Nor does Suleika dwell on the fact that she’s a regular stewpot of respiratory infections. She’s been sick all winter with one thing or another.

“Every dinner since you’ve been to my house,” she says, “I’ve left either halfway through or shortly after while everyone’s hanging out and having fun. I go straight to bed and I don’t say a word. I call it my ‘Tunisian exit.’ ”

Her relentless fatigue and nausea and infections have an ancillary consequence: anxiety about making plans. “Like, will I be well enough?” she explains. “Should I just cancel now so that I don’t mess up anybody else’s schedule? Or will I feel well that day and regret that I canceled? I have that conversation with myself about every single preplanned social activity or work commitment.”

On December 24, Suleika’s Isolation Journals newsletter talked about her first experience hosting Christmas, for which her mother, father, and brother flew in from Tunis. She described the “obnoxiously” large tree she purchased, the two-hour meeting her family had about their dinner feast, the old-school paper snowflakes her mom pasted to the windows.

What she didn’t write about was how she felt, which was terrible, or how many holiday plans with her family came undone. “Since pretty much mid-December, I’ve barely been able to function,” she tells me. “I spent all of Christmas in bed. We were going to go ice-skating. We were going to go Christmas shopping in the city. We were going to do all the things, and I didn’t do a single one.”

Suleika often writes about trying “to hold the beauty and cruelty of life in the same palm.” But one wonders if writing so publicly and so frequently—if being an inspiration to so many—makes her feel some unconscious obligation to focus more on the former. When Between Two Kingdoms came out in February 2021, Suleika already suspected something was amiss. Her blood counts were dropping, she was always tired, and she had blistering migraines. But she was so elated that her memoir was finally out there in the world that the joy energized her. On her publicity tour, she told interviewers that yes, she was cured.

“I would hear all the time from people with similar illnesses,” Suleika says. “People who’d write to me and say, ‘You give me hope that this can be my life too, 10 years out.’ ” When her doctors finally confirmed she’d relapsed, in the fall of 2021, it spooked her so much that she didn’t share the news in The Isolation Journals for three weeks. “I felt awful,” she says. “The very particular weirdness of having a public platform related not just to illness but to survival …” She trails off.

“Because Suleika has the exuberance that she has, the force of will that she has, I sometimes forget that she has gone through what she’s gone through,” her friend Carmen Radley said. “Superhuman people aren’t afraid of getting sick again, are they? But I think she was terrified of it.”

That’s really the thing her readers don’t always see: the fear.

And it’s not because Suleika is dishonest. It’s because she is, as Gilbert says, so fucking stoic. It’s because her quotidian nausea is relative to the pain of, let’s say, vomiting up the entire lining of her esophagus, which she has done more than once. It’s because she doesn’t want to cause a fuss over every upset when there may come a day when she needs the cavalry to come charging in at full gallop. It’s because she doesn’t want her relationship with Jon to be defined as that of a patient and caregiver. “I don’t want people to view me first and foremost as a sick person,” she says.

But fear is what she is now experiencing, during our phone conversation in January: the prospect of a second relapse and a third transplant. Why is she getting so many respiratory infections? Why is she always so tired? Why, when she went back on Adderall recently (common for post-transplant patients, to boost their energy), did it do absolutely nothing? “I’m like, Did I get some dud pills? ”

She has not written about this anxiety. “To say it out loud,” she says, “is to make it real.”

She is bracing herself for another biopsy next week. If the cancer has returned, her brother remains her only donor option. The bone-marrow registry tilts very heavily toward white people, because the bulk of the donors are white—a problem so personally relevant and galling to Suleika that she’s become involved with an organization called NMDP, formerly called Be the Match, to encourage more people to donate.

Ever since her second transplant, in 2022, Suleika has had night terrors. Once, while fast asleep, she hit Jon with a closed fist. “And then I did it again the next night,” she says. “I was so scared of doing it again, I wanted to sleep in the guest room, and Jon said, ‘No, we have to sleep in the same bed.’ ” For six weeks, she saw a sleep therapist.

Suleika both writes and talks, with surprising clarity, about the philosophical problem of living with uncertainty. But there’s a reason that liminal places are often depicted as more hellish than hell. The betwixt and between is where the tortured ghost of Hamlet’s father rattles around, boiling with rage and sorrow. It’s where Hamlet himself dwells—trapped between childhood and adulthood, uncertain whether he wants to live or die.

It’s the time between biopsy and results. Which in some larger sense is every day if you’re Suleika—not knowing, with the recurring specter of acute myeloid leukemia, if you have months left on this planet or 50 years.

“I do feel like I’m living my own double life sometimes,” Suleika says, “in terms of how I’m feeling and what I’m sharing and showing—not just to the world, but even to the people closest to me. And to myself.”

Jon is playing a concert at Carnegie Hall in the run-up to his 2022 appearance at the Grammys. He’s seated at the piano.

“I want to dedicate this last one to Suleika,” he tells the audience.

Then there’s silence. And more silence. And more and more silence. Jon is staring intently at the keys. This is perhaps the most spellbinding moment in American Symphony. The camera becomes so uncomfortable with Jon’s stillness that it pans slowly down to Jon’s fingers, still lingering on those keys, and then slowly back up to his face.

The live audience, even the viewing audience, doesn’t know it, but Suleika’s hospital bracelet is in his pocket.

World Music Radio, Jon’s 2023 record, rests on the piano in Suleika and Jon’s Brooklyn home. (Heather Sten for The Atlantic)

He finally begins to play. Tunefully and deliberately at first, but soon frenetically and repetitively, and then dissonantly and angrily, a blur of hydraulics, until out of this chaos emerges something utterly freaking majestic.

I later ask Jon what was running through his head in that long moment of quiet.

“Mmmmmmm,” he says. “Don’t force life.”

“I understood you to be in prayer,” Suleika says.

“That’s what it is,” he says, looking appreciatively at her. “Psalm 46: ‘Be still and know I am God.’ The most natural state is in a state of prayer. Stillness. Knowing. Connected to the love. And then you can send it to the person.”

He turns back to me. “That whole concert—the concept was to sit at the piano for two hours straight with no music and no preparation,” he says. “It was called ‘Streams,’ like stream of consciousness. The divine stream, where all things creative come from. You can always dip into it if you have access to that.”

Suleika’s. Latest. Biopsy. Is. Negative! When we speak on the phone again in late January, I can hear her relief.

But I still hear anxiety, even fear. As if she’d received dreadful news. In fact, she had.

Just before her biopsy, two of her young friends with acute myeloid leukemia had relapsed. One is in her mid-30s and has two young children. The other had been doing great, jetting off to weddings and resuming her day job. Then, one week after receiving perfect labs, she went into cardiac arrest. Her doctors told her she was likely out of options.

The day before her biopsy, Suleika and her father went to visit this friend in the hospital. “It was just heartbreaking,” she says, “and, selfishly, terrifying.” The experience was like staring at a green-gray hologram of the potential future. When she saw her own nurse, she asked for one, just one, reassuring anecdote. “And she was like, ‘Well, we have one guy who just had a second bone-marrow transplant, and he’s doing great.’ And I was like, ‘That’s not helpful to me. I want stories of people who are 20 years out and thriving.’ ”

Suleika’s case is practically without analogy. Her team likes to call her “a medical unicorn”: Almost no one relapses as far into remission as Suleika did.

“When you have a recurrence, the tenor shifts,” Suleika says. “People are no longer saying, ‘You’re going to beat this; everything’s going to be okay.’ ”

Seeing her friend reminded Suleika, for the umpteenth time, that the membrane between health and illness is thin. And Suleika had just enough reason to remain nervous about her present state. Her “chimerism”—the percentage of her brother’s donor cells versus her own—had recently slipped down to 99 percent. The doctors had assured her that small fluctuations were normal. But she wasn’t going to exhale, clearly, until she learned she wasn’t continuing her descent. “I’ve gone from being in a mode of recovering from this most recent transplant and trying to get my life together,” she says, “to shifting into a place of being afraid of relapse.”

I wonder whether forgoing maintenance chemo this time around has also compounded her anxiety. After her second transplant, Suleika’s doctors urged her to continue it in perpetuity. She lasted less than a year. There was no life in her life, just intolerable nausea and listlessness. On one of the rare evenings that she rallied to leave her home—a state dinner at the White House in December 2022; Jon was performing—she felt queasy throughout, terrified that at any moment she’d throw up in front of the Bidens. She decided to stop chemo.

But Suleika says she has no regrets about having stopped, given that she was never especially convinced that chemo would even extend her life. Rather, what frightens her is that remission is a fragile state—something she learned firsthand in 2021. “I have a ticking clock in the back of my head,” she says. “Now I’m thinking I’ll be lucky if I get to five years before relapse.”

So here we are, back where we started: How does one live with an everyday, every-hour awareness of how much healthy time might remain—perhaps all the time that might remain—as a very specific math equation? How does this translate into creative habits, a modus vivendi, a philosophy of life?

[Read: What to read when you need to start over]

“For me,” Suleika says, “it means building a world in my home right now. It means gathering the people I love most and spending as much time as I can with them. It means bringing home foster dogs every month, practically, even though nothing about that makes sense for our lives right now.” During her spells of insomnia, when the cancer goblins are rapping at her consciousness, Suleika scours Petfinder.com for underloved runts. “It means drilling into projects I’m most excited about,” she continues, “but it also means creating unstructured time for reading and exploring and painting.”

She’s doing, as she likes to say, “all the things.” Or as Anthony Burgess wrote in Little Wilson and Big God: “Wedged as we are between two eternities of idleness, there is no excuse for being idle now.”

A few months earlier, while we were lying on the couch in her Brooklyn brownstone, I had screwed up the courage to ask Suleika how often she thinks about her own mortality.

“I think about it,” she told me. “I’m not afraid of death. I’ve now witnessed enough people die and been with them in those moments.”

How about Jon?

“Jon is deeply afraid of death.”

His or yours?

“Everyone’s. But very afraid of his own death.”

Has he talked with you about how he’d do—or what he’d do—if you weren’t there?

“He won’t talk about that with me.”

Do you want him to?

“No. Because I don’t think he can. It’s too painful for him.”

He is carrying a lot. And he’s more vulnerable, more sensitive, than his iridescent shell would suggest.

“I know Jon is not my child,” she said. “But I also worry about—I was going to say orphaning him, but that’s a little too Freudian.”

Actually, I said, I think it’s pretty common for spouses to fear abandoning each other.

“I think I feel that way in particular about Jon because …” She spoke carefully, thoughtfully. “I know him so deeply and I know how unknown he is to most.”

Yet it is also Jon, powered by his faith and his bottomless drive, who helps keep Suleika moving toward that future he’s determined to have.

“Daydreaming can feel really dangerous when you don’t know if you’re going to exist in the future,” she told me. “It becomes an act of willful defiance. So I force myself to have a five-year plan.”

And part of that plan, she now informs me, isn’t just completing two books, but a very different sort of birth.

She and Jon would like to take concrete steps toward having a child in the near future.

In spite of the uncertainty.

In spite of what Suleika calls her “survival math.”

“Jon is really helpful to me here,” she says. “It’s the same logic he applied to getting married the night before the bone-marrow transplant, which is: We had a plan, and we are not going to let this get in the way of our plan. This is how Jon operates in his life in general. He dreams as big as he can dream and lets nothing hold him back until he’s done absolutely everything in his power.”

Suleika has written about how she doesn’t want to have a baby only to abandon the child. She still has those concerns.

“But I’ve talked about it with the Miles family.” She’s referring to dear friends with three kids of their own. “I’ve talked about it with Lizzie G. and Lizzie P.” Meaning Gilbert, Presser. “And they were like, If that were to happen, your kid will be surrounded by so much love.” From Jon above all, but also from them, from many others. “What Jon has ultimately said to me,” she says, “is that the most important thing is for a child to know how deeply loved they are. And whatever future child we have—whether it’s biologically our own or adopted or we become foster parents or just really doting aunties and uncles to the other people’s kids—there are many ways to do this.”

Two days after we speak, I get a text from Suleika: “Some good news just rolled in!!! Back to 100, baby.” Her chimerism is no longer at 99 percent. With this news, her mood improves; the familiar buoyancy returns.

Yet even before she knew this, Suleika was forging ahead, refusing to let her past define her future. How many of us can do that? The past is the ragged territory from which we take our cues, make our most basic assumptions. But planning for a child: That is a rejection of a life interrupted. That’s an insistence on continuity.

Continuity is the implicit subject in one of her most striking paintings. It’s a colorful oceanscape of jellyfish, a life form that fascinates Suleika, particularly the Turritopsis dohrnii, considered in some sense to be immortal. Whenever it’s injured, it reverts back into a polyp, eventually releasing tiny jellyfish genetically identical to its previous adult self. It’s a creature that reincarnates, continues on, in response to—and in spite of—mortal threat.

Children and art: the two most meaningful things, Stephen Sondheim famously wrote, we mortals can leave behind. Suleika’s life’s emphasis, always, has been on the act of creation—and communicating to others how essential it is to who we are. Children and art, children or art, the courage to create: Those will be her legacy, no matter what.

This article appears in the June 2024 print edition with the headline “The Art of Survival.”

Biden Silences the Doubters

2024-03-08T13:56:43-05:00

It is hardly fashionable to say positive things about Joe Biden these days. I myself have been among his doubters, convinced that he’d never be able to win a rematch against Donald Trump. I imagined myself on a flight bound for Reykjavík, Lisbon, Sydney, wherever on November 6, staring backwards out the window and squinting at the smoking ruins of American democracy, grimly praying that I wouldn’t turn into a pillar of salt.

But it’s undeniable that Biden gave a stunning speech last night, and it wasn’t just because there was a game on quality to his remarks, the thwapping sound of a gauntlet hitting the ground. It’s because he managed to do that thing he does best, which his aides long ago described to Richard Ben Cramer in What It Takes as “the connect.” Biden’s primary strength has never been formulating policy or grand ideas. It’s been his ability to read a room, to sweep in the energy that’s already there, and to make the most impersonal settings feel deeply intimate, like one-on-one discussions. And last night, in his State of the Union address—generally the dullest and most choreographed of presidential rituals—he did just that.

[David A. Graham: The most unusual State of the Union in living memory]

There was a call-and-response quality to the whole affair. In the after-chatter, the one spontaneous part of this ritual, Representative Gregory Meeks told Biden he was “a Baptist preacher tonight!” And Senator Raphael Warnock, an actual Baptist preacher, approvingly called it “a sermon.” During the address, Biden was also engaging with his hecklers (I’m looking at you, Marjorie Taylor Greene); razzing his legion of obstructionists (“If any of you don’t want that money in your district, let me know”); and cheerfully replying to boos. (“Oh no? You guys don’t want another $2 trillion tax cut for the super wealthy? That’s good to hear.”) He spoke in different registers, at one point lowering his voice and talking far more casually and amusingly about a meeting with the leaders of a business roundtable a year and a half ago. (“They were mad that I—they were angry—well, they were discussing why I wanted to spend money on education.”) And I’m fairly confident that he was the first president delivering the State of the Union to mention potato chips.

As he was wrapping up, Biden directly addressed Senator Lindsey Graham of South Carolina, once (and maybe still) clearly his pal, because until Donald Trump came along, Graham was one of the most reliable bipartisan players in the Senate. “I know you don’t want to hear any more, Lindsey,” he said. “But I’ve got to say a few more things.”

This was a reminder that Biden remains, in some sense, a creature of the Senate, a place where once upon a time you spoke with those with whom you disagreed, because alliances across the aisle were necessary in order to pass legislation. Mitch McConnell and the more radicalized Trump caucus changed all that, believing obstruction was a better political strategy, and it wasn’t that hard to do, seeing as they didn’t much believe in government anyway. But Biden still has an element of LBJ in him, believing in persuasion—and sharing, to boot, his wariness and resentment of fancy-pants Ivy League elites.

I still flinch when Biden mixes up leaders and countries, though Trump does the same and knows one-thousandth of what Biden does and speaks with zero coherence. Trump’s followers will forgive anything; Biden’s won’t. And I still fear that Biden may not have the stamina to consistently deliver the sort of barn burner he gave last night on the campaign trail. That kind of energy is hard to sustain, even if you’ve got the freakish stamina that state and national politics requires, or what one of LBJ’s aides called “extra glands.”

[Read: Biden is still the Democrats’ best bet for November]

But last night, Biden proved that he’s not at all the frail, rapidly dementing Ichabod of GOP caricature, and in fact may be far better at this whole reelection thing than Democrats had suspected. He may make his naysayers in the mainstream press rethink the conventional wisdom for a while. This SOTU might make all of us STFU, however briefly.

Biden still has, at the very least, a flair for retail politics. The best proof of that was how long he lingered once the speech was over—35 extra minutes—chitchatting with everyone in the chamber. The Secret Service kept urging him to leave; Speaker Mike Johnson tapped his watch, also signaling that it was time to go. But Biden remained, even as the lights were dimming all around him. At 81, he couldn’t resist the connect.

What Will Happen to the American Psyche If Trump Is Reelected?

2023-12-08T06:00:00-05:00

Editor’s Note: This article is part of “If Trump Wins,” a project considering what Donald Trump might do if reelected in 2024.

Lee este artículo en español.

There were times, during the first two years of the Biden presidency, when I came close to forgetting about it all: the taunts and the provocations; the incitements and the resentments; the disorchestrated reasoning; the verbal incontinence; the press conferences fueled by megalomania, vengeance, and a soupçon of hydroxychloroquine. I forgot, almost, that we’d had a man in the White House who governed by tweet. I forgot that the news cycle had shrunk down to microseconds. I forgot, even, that we’d had a president with a personality so disordered and a mind so dysregulated (this being a central irony, that our nation’s top executive had zero executive function) that the generals around him had to choose between carrying out presidential orders and upholding the Constitution.

I forgot, in short, that I’d spent nearly five years scanning the veldt for threats, indulging in the most neurotic form of magical thinking, convinced that my monitoring of Twitter alone was what stood between Trump and national ruin, just as Erica Jong believed that her concentration and vigilance were what kept her flight from plunging into the sea.

Say what you want about Joe Biden: He’s allowed us to go days at a time without remembering he’s there.

[Adam Serwer: An incompetent authoritarian is still a catastrophe]

But now here we are, faced with the prospect of a Trump restoration. We’ve already seen the cruelty and chaos that having a malignant narcissist in the Oval Office entails. What will happen to the American psyche if he wins again? What will happen if we have to live in fight-or-flight mode for four more years, and possibly far beyond?

Our bodies are not designed to handle chronic stress. Neuroscientists have a term for the tipping-point moment when we capitulate to it—allostatic overload—and the result is almost always sickness in one form or another, whether it’s a mood disorder, substance abuse, heart disease, type 2 diabetes, or ulcers. “Increase your blood pressure for a few minutes to evade a lion—a good thing,” Robert Sapolsky, one of the country’s most esteemed researchers of stress, emailed me when I asked him about Trump’s effect on our bodies. But “increase your blood pressure every time you’re in the vicinity of the alpha male—you begin to get cardiovascular disease.” Excess levels of the stress hormone cortisol for extended periods is terrible for the human body; it hurts the immune system in ways that, among other things, can lead to worse outcomes for COVID and other diseases. (One 2019 study, published in JAMA Network Open, reported that Trump’s election to the White House correlated with a spike in premature births among Latina women.)

Another major component of our allostatic overload, notes Gloria Mark, the author of Attention Span, would be “technostress,” in this case brought on by the obsessive checking of—and interruptions from, and passing around of—news, which Trump made with destructive rapidity. Human brains are not designed to handle such a helter-skelter onslaught; effective multitasking, according to Mark, is in fact a complete myth (there’s always a cost to our productivity). Yet we are once again facing a news cycle that will shove our attention—as well as our output, our nerves, our sanity—through a Cuisinart.

[Read: ‘This is fine,’ the meme that defined a decade]

One might reasonably ask how many Americans will truly care about the constant churn of chaos, given how many of us still walk around in a fug of political apathy. Quite a few, apparently. The American Psychological Association’s annual stress survey, conducted by the Harris Poll, found that 68 percent of Americans reported that the 2020 election was a significant source of strain. Kevin B. Smith, a political-science professor at the University of Nebraska at Lincoln, found that about 40 percent of American adults identified politics as “a significant source of stress in their lives,” based on YouGov surveys he commissioned in 2017 and 2020. Even more remarkably, Smith found that about 5 percent reported having had suicidal thoughts because of our politics.

Richard A. Friedman, a clinical psychiatry professor at Weill Cornell Medical College, wonders if a second Trump term would be like a second, paralyzing blow in boxing, translating into “learned helplessness on a population-level scale,” in which a substantial proportion of us curdle into listlessness and despair. Such an epidemic would be terrible, especially for the young; we’d have a generation of nihilists on our hands, with all future efforts to #Resist potentially melting under the waffle iron of its own hashtag.

Which is what a would-be totalitarian wants—a republic of the indifferent.

Ironically, were Trump to win, an important group of his supporters would bear a particular psychological burden of their own, and that’s our elected GOP officials. I’ve written before that Trump’s presidency sometimes seemed like an extended Milgram experiment, with Republican politicians subjected to more and more horrifying requests. During round two, they’d be asked to do far worse, and live in even greater terror of his base—and even greater terror of him, as he tells them, in the manner of all malignant narcissists, that they’d be nothing without him. And he wouldn’t be wholly wrong.

The Trump base, however, will be intoxicated. We should brace ourselves for a second uncorking of what Philip Roth called “the indigenous American berserk”: The Proud Boys will be prouder; the Alex Jones conspiracists will let their false-flag freakishness fly; the “Great Replacement” theorists will become more savage in their rhetoric about Black, Hispanic, and Jewish people. (The Trump administration coincided with a measurable increase in hate crimes, incited in no small part by the man himself.)

[From the January/February 2024 issue: The Proud Boys love a winner]

But at this point, even an electoral defeat for Trump might not significantly diminish the toll that politics is taking on the collective American psyche. “In such a polarized society, everyone is always living with a lot of hate and fear and suspicion,” Rebecca Saxe, a neuroscientist at MIT who thinks a good deal about tribalism, told me. The winner of the presidential election “may change who bears the burden every four or eight years, but not the burden itself.”

Of course, fractured attention, heightened anxiety, and moral cynicism may come to seem like picayune problems if Trump wins and some 250 years of constitutional norms and rules unravel before our eyes, or we’re in a nuclear war with China, or the former chairman of the Joint Chiefs of Staff is frog-marched off to court for treason.

“You get Trump once, it’s a misfortune,” Masha Gessen, the author of Surviving Autocracy, told me. “You get him twice, it’s normal. It’s what this country is.”

This article appears in the January/February 2024 print edition with the headline “The Psychic Toll.” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.

The Death of an Indispensable Person

2023-08-23T10:00:00-04:00

What do you call a person who’s central—indispensable—to the happy functioning of your family, yet is in no way tied to it by blood? And how do you describe the grief when that person is gone?

Carmen Ayala was that indispensable person to us. For 24 years, she took care of my aunt, Adele Halperin, who could not take care of herself. My aunt died on May 7, just as I was completing a long feature about her for this magazine. And on July 19—a scant two days after the issue had been shipped off to the printer, a mere 10 weeks since Adele had passed away—Carmen died too.

To my astonishment, I was more distraught over Carmen’s death than I was over my own aunt’s. Here was a woman who had loved Adele as if she were her own, coaxing her out of the brittle cortex of trauma, restoring her to full dignity and humanity. My family, I thought, would need years to fully express our gratitude, and I had foolishly counted on them, though Carmen was 81 and in failing health. She seemed too indefatigable, too indomitable, to do something so commonplace as die. That her heart might one day give out struck me as both impossible and indecent: Carmen was defined by her heart.

[From the September 2023 issue: Jennifer Senior on the ones we sent away]

The backstory: In 1953, at just 21 months, my aunt became a ward of New York State, not out of cruelty but custom—she was developmentally and intellectually disabled, and in those days, most doctors pressured the parents of such children to institutionalize them. My grandparents dutifully did as they were told, putting Adele first in Willowbrook State School, whose name eventually became synonymous with filth, abuse, and neglect, and then Wassaic State School, which was only marginally better. My aunt didn’t move to residential care until 1980, and even then she suffered, attending a day program in an old factory whose clattering machinery overwhelmed her senses. The family care she received back then was likely adequate, but nothing more; the few times my mother visited her were awkward and bewildering. The woman who cared for my aunt did little to help my mother understand who her sister was or what she liked, to give her a sense of what made her sister Adele.

But in 1999, Adele moved to Carmen and Juan Ayala’s house. From the moment Mom and I stepped into their home, we could tell that something was different. It was a place full of in-jokes and familial patter. “Who’s the turkeyhead?” Juan liked to say to my aunt. “Daddy!” Adele would answer, pointing at him, and Carmen would hoot with laughter. If my aunt wanted perfume, Carmen bought her perfume. If my aunt reached for a bottle of red hair dye in Walmart, Carmen bought that too and dyed her hair red. Carmen was forever on the hunt for shiny things—gold-plated earrings, coats with big brass buckles, baseball hats with rhinestones—because my aunt loved bling. Carmen pureed Adele’s meals (my aunt had lost all of her teeth) and organized Adele’s clothes by season and kept meticulous calendars and records, making sure my aunt never missed a single doctor appointment.

I could never have gotten a sense of who Adele was if not for Carmen. She was a close and loving observer of my aunt’s habits and character, and that is what my family needed in order to get to know and understand her, this close relation who’d been written out of our family lineage at just 21 months. Carmen was the one who told me stories about my aunt’s hilarious fastidiousness, her insistence on order and precision. During my final visit with Adele, Carmen quietly summoned me to the bathroom, where my aunt had just showered and was now slowly wiping all the bubbles off the brass handles and bathtub rim: too much mess. A shower should be free of bubbles.

Carmen had an individual sense of everyone she cared for, and she was possessed of infinite patience. When my aunt first moved into her home, she had regular tantrums and a robust potty mouth. Other caregivers would have given up. Carmen did not. She was obstinate in her persistence, talking quietly and patiently to Adele, recruiting her into simple household chores, until the two of them formed a bond.

Over time, that bond became profound. It was Adele who popped into Carmen’s doorway each weekend morning with, “Hello, Mommy! How are you doing today, Mommy?” It was Adele who went into Carmen’s room to comfort her if she was feeling unwell. When Adele died, Carmen was crushed. “I’m always looking for her,” she would say. “I look at the clouds when I’m outside; when I’m in my room, I wait to see if she’ll pass by.”

And shortly before Carmen died, it happened: Adele appeared to her. She hadn’t even told her youngest daughter, Evelyn, about it, though she lived nearby and they spoke all the time. Evelyn learned on the day of her mother’s funeral, when she was chatting with Adele’s former nurse. “I think Adele was waiting,” Evelyn told me. “She died first to wait for my mom. That’s how I see it.”

And it’s a gorgeous notion, this idea that my aunt may have died just before Carmen in order to greet her in heaven’s doorway. But there’s a very different way to interpret this chain of events. Last fall, my aunt and her roommate came home from their day program with COVID. Yet someone still had to cook for them, care for them, nurse them back to health as they were ailing in bed. And that duty fell to Carmen, as it always did, and as these jobs so often do: Immigrant and poor women, often of color, are the silent underclass that cares for the country’s most vulnerable, making possible the lives of those with more education and options.

[From the October 2010 issue: Autism’s first child]

Carmen already had Sjögren’s syndrome, an autoimmune disorder that in her case manifested most floridly in pulmonary hypertension. But when Carmen got COVID—which she inevitably did, just days after Adele and her roommate came home with it—she never truly recovered. Oxygen tanks became ubiquitous features in her home; she now required them morning, noon, and night. When my aunt lost consciousness from a massive heart attack this May, and Carmen and Juan had to lift her out of her bed to administer CPR, Carmen still had her oxygen tank in tow.

I can’t shake this image. Carmen, yoked to her oxygen tank, still exerting herself on my aunt’s behalf.

Nor can I stop thinking about Juan. He is joy incarnate, a mischievous prankster, the soul of the house. Only four months ago, that house had five people in it; now it is on the market. My aunt is gone. His wife is gone. The two other residents have been relocated to other homes. (God, the confusion they must feel.) Juan recently left for Puerto Rico, to go live with one of his children.

He is lost without Carmen. And who wouldn’t be? She was a fortress of strength. She came to New York from Puerto Rico when she was 13; went to work at various factories in Lower Manhattan starting at 16 (until the day she died, she couldn’t eat a hot dog, having seen, literally, how the sausage got made); and then worked as a cleaning woman, both in schools and in Midtown office towers. She eventually opened a day care in her home in the Bronx. She also fostered children for a time. She did both of these things while caring for four kids of her own, basically on her own. (She met Juan later.) Her oldest child died of a blood disorder.

“She was a provider,” Evelyn explained to me. When Carmen’s brother’s Staten Island house burned down, she gave him her living-room furniture. When her sister went through a difficult spell, she took her in, along with her nieces and nephews. “She was always helping someone,” Evelyn said, “whether it was family or a stranger.” Her kids inherited this same spirit of generosity. Her remaining son, Edgar, has also fostered several children and adopted three.

At Adele’s funeral, the rabbi called Carmen a Lamed Vavnik, one of the righteous 36 who walk among us, making the world a better and more beautiful place. By definition, Lamed Vavniks don’t seek recognition for their good deeds. They do their work quietly, unfussily, because it ought to be done. But the life of Carmen Ayala deserves to be celebrated, just as my aunt’s deserved to be celebrated. And her name, like my aunt’s, should be known.

The Ones We Sent Away

2023-08-07T06:00:00-04:00

Photographs by Yoshiyuki Matsumura

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

This story starts, of all things, with a viral tweet. It’s the summer of 2021. My husband wanders into the kitchen and asks whether I’ve seen the post from the English theater director that has been whipping around Twitter, the one featuring a photograph of his nonverbal son. I have not. I head up the stairs to my computer. “How will I find it?” I shout.

“You’ll find it,” he tells me.

I do, within a matter of seconds: a picture of Joey Unwin, smiling gently for the camera, his bare calves and sandaled toes a few steps from an inlet by the sea. Perhaps you, too, have seen this photo? His father, Stephen, surely did not intend it to become the sensation it did—he wasn’t being political, wasn’t playing to the groundlings. “Joey is 25 today,” he wrote. “He’s never said a word in his life, but has taught me so much more than I’ve ever taught him.”

That this earnest, heartfelt tweet has been liked some 80,000 times and retweeted more than 2,600 is already striking. But even more so is the cascade of replies: scores of photographs from parents of non- and minimally verbal children from all over the world. Some of the kids are young and some are old; some hold pets and some sit on swings; some grin broadly and some affect a more serious, thoughtful air. One is proudly holding a tray of Yorkshire pudding he’s baked. Another is spooning his mom on a picnic blanket.

I spend nearly an hour, just scrolling. I am only partway through when I realize my husband hasn’t steered me toward this outpouring simply because it’s an atypical Twitter moment, suffused with the sincere and the personal. It’s because he recognizes that to me, the tweet and downrush of replies are personal.

He knows that I have an aunt whom no one speaks about and who herself barely speaks. She is, at the time of this tweet, 70 years old and living in a group home in upstate New York. I have met her just once. Before this very moment, in fact, I have forgotten she exists at all.

It is extraordinary what we hide from ourselves—and even more extraordinary that we once hid her, my mother’s sister, and so many like her from everyone. Here are all these pictures of nonverbal children, so pulsingly alive—their parents describing their pleasures, their passions, their strengths and styles and tastes—while I know nothing, absolutely nothing, of my aunt’s life at all. She is a thinning shadow, an aging ghost.

When I first discovered that my mother had a younger sister, I reacted as if I’d been told about the existence of a new planet. This fact at once astonished me and made an eerie kind of sense, suddenly explaining the gravitational force that had invisibly arranged my family’s movements and behaviors for years. Now I understood why my grandfather spent so many hours in retirement as a volunteer at the Westchester Association for Retarded Citizens. Now I understood my grandmother’s annual trips to the local department store to buy Christmas presents, although we were Jewish. (At the time, my aunt lived in a group home where the residents were taken to church every Sunday.)

I now even understood, perhaps, the flickers of melancholy I would see in my grandmother, an otherwise buoyant and intrepid personality, charming and sly and full of wit.

And my mom: Where do you start with my mom? For almost two years, she had a sister. Then, at the age of 6 and a half, she watched as her only sibling, almost five years younger, was spirited away. It would be 40 years before she saw her again.

Strange how seldom we think about who our parents were as people before we made their acquaintance—all the dynamics and influences that shaped them, the defining traumas and triumphs of their early lives. Yet how are we to know them, really, if we don’t? And show them compassion and understanding as they age?

I was 12 when I learned. My mother and I were sitting at the kitchen table when I wondered aloud what I’d do if I ever had a disabled child. This provided her with an opening.

Her name is Adele.

She had red hair, I was told. Weird: Who in our family had red hair? (Actually, my great-grandmother, but I knew her only as a white-haired battle-ax dedicated in equal measure to her soap operas and cigarettes.) She is profoundly retarded, my mother explained. There had been no language revolution back then. This was the proper descriptor, found in textbooks and doctors’ charts. My mother elaborated that the bones in Adele’s head had knitted together far too early when she was a baby. So, a smaller brain. It was only when I met her 16 years later that I understood the physical implications of this: a markedly smaller head.

It was staggering to meet someone who looked just like my mother, but with red hair and a much smaller head.

My grandmother told my mother that she instantly knew something was different when Adele was born. Her cry wasn’t like other babies’. She was inconsolable, had to be carried everywhere. Her family doctor said nonsense, Adele was fine. For an entire year, he maintained that she was fine, even though, at the age of 1, she couldn’t hold a bottle and didn’t respond to the stimuli that other toddlers do. I can’t imagine what this casual brush-off must have done to my grandmother, who knew, in some back cavern of her heart, that her daughter was not the same as other children. But it was 1952, the summer that Adele turned 1. What male doctor took a working-class woman without a college education seriously in 1952?

Only when my mother and her family went to the Catskills that same summer did a doctor finally offer a very different diagnosis. My grandmother had gone to see this local fellow not because Adele was sick, but because she was; Adele had merely come along. But whatever ailed my grandmother didn’t capture this man’s attention. Her daughter did. He took one look at her and demanded to know whether my aunt was getting the care she required.

What did he mean?

“That child is a microcephalic idiot.”

My grandmother told this story to my mother, word for word, more than four decades later.

In March of 1953, my grandparents took Adele, all of 21 months, to Willowbrook State School. It would be many years before I learned exactly what that name meant, years before I learned what kind of gothic mansion of horrors it was. And my mother, who didn’t know how to explain what on earth had happened, began telling people that she was an only child.

It is the fall of 2021. My aunt lives in a uniquely unlovely part of upstate New York, a dreary grayscape of strip malls and Pizza Huts and liquor stores. But her group home is a snuggery of overstuffed furniture, flowers, family photos; the outside is framed by an actual white picket fence. It is precisely the kind of home you would hope that your aunt, abandoned to an institution through a cruel accident of timing and gravely misplaced ideas, would find herself in as she ages. When my mother and I arrive to see her, she is waiting for us at the door.

Adele with her parents in the early 1980s (Courtesy of Rona Senior)

The drive to this house was 90 minutes from where my folks live in northern Westchester. Yet the car ride yielded just 29 minutes and 15 seconds of recorded conversation with my mother. This could partly be explained by the unfamiliar directions in her GPS, but still: Here she was, visiting the sister she hadn’t seen since 1998—and then only twice before that, in 1993, shortly after her father died—and she had almost nothing to say about where we were headed or what the weather was like inside her head. She seemed far more interested in telling me about the necklaces she was making and selling to support Hadassah, one of her favorite charities. Whether this was out of anxiety or enthusiasm, I didn’t know.

“Are you feeling nervous about seeing her?” I finally asked.

“No.”

“Really? Why not? I’m nervous.”

“Why are you nervous?”

“Why are you not nervous?”

“Because I made peace with my separation from her many, many years ago.”

My grandparents, for their part, had visited my aunt almost every week, at least when she was young. Even after my grandmother moved to Florida, she made an effort to visit once a year. When I was in my late teens or early 20s, I remember my mother telling me that Adele never knew or understood who my grandmother was, not ever. This fact stuck with me—and hit me especially hard when I became a mother myself. As we were humming along the Taconic State Parkway, I reconfirmed: Adele didn’t recognize her own mother?

“No,” she said. “She didn’t know her. She didn’t understand the concept of a mother.”

But when my mother last saw her sister, in 1998, it wasn’t my grandmother who accompanied her. It was me. The whole trip had been at my instigation, just like this one. I’d mentioned that I was interested in meeting my aunt, and my mother had stunned me then, just as she’d stunned me now, by saying, “Why don’t we go together?”

And what do I remember of that singular day? How uncharacteristically animated and affectionate my mother was when she saw Adele, for one thing. You could almost discern the outlines of the little girl she’d been, the one who would circle Adele’s crib and play a made-up game she called “Here, Baby.” Also, how petite my aunt was—4 foot 8, dumpling-shaped—and how slack the musculature was around her jaw, which may have had something to do with the fact that my aunt had no teeth. She had supposedly taken a medication that had made them decay, though there’s really no way to know.

But what stayed with me most from that day—what I thought about for years afterward—were the needlepoint canvases marching along the walls in Adele’s bedroom. My mother and I both gasped when we saw them. My mother, too, was an avid needlepointer in those years, undertaking almost comically ambitious projects—the Chagall windows, the Unicorn Tapestries. Adele’s handiwork was simpler, cruder, but there it was, betokening the same passion, the same obsession.

One other thing: My mother and I discovered that day that Adele could carry a tune—and when she sang, she suddenly had hundreds of words at her disposal, not just yes and no, the only two words we heard her speak. Again, we were amazed. For years, my mother was a pianist and studied opera; her technical skills were impeccable, her sight-reading was impeccable, her ear was impeccable. She could pick up the telephone and tell you that the dial tone was a major third.

My mother couldn’t get over it—the needlepoints, the singing.

I felt like I was staring at some kind of photonegative of a twin study.

So here we are, 23 years later, and Adele is greeting us at the door. She is wearing a bright-red sweater. There is my mother at the door. She, too, is wearing a bright-red sweater. Adele is wearing a long, chunky beaded necklace she has recently made at her day program. And my mother, like her sister, is wearing a long, chunky beaded necklace she has recently made—not at a day program, obviously, but for Hadassah. It turns out that Adele loves making necklaces and has whole drawers of them. As, lately, does my mother.

I have a picture of the two of them standing side by side that day. I cannot stop looking at it.

Rona and Adele, November 28, 2021 (Courtesy of Jennifer Senior)

Carmen Ayala, Adele’s extraordinary 79-year-old caretaker, has instructed Adele to say “Hello, Rona, I love you” to my mother, a gesture that’s both sweet and awkward—Adele doesn’t know my mother by sight, much less by name. Still, it catches my mother by surprise, not least because it suggests that her sister’s vocabulary has expanded considerably since we last saw her, when she was living in a different group home. They embrace and take seats on the couch in the living room. We try, for a time, to ask Adele basic questions about her day, without much success, though when we ask if she knows any Christmas carols—the holiday is coming up—she sings “Santa Claus Is Coming to Town” for us, and my mother replies in kind with “Silent Night.” Then Adele zones out, staring at her hands. She can spend hours staring at her hands.

My mother and I start to ask Carmen and her youngest child, Evelyn—she lives nearby and knows well all three residents in her parents’ home—the customary questions: How did Carmen get into this line of work? What is Adele’s routine? How did Adele handle the transition to Carmen’s house 22 years ago, after her previous caretaker retired? And although I’m interested in the answers, I find myself growing restless, thoughts of that Twitter thread plucking at my consciousness. I finally blurt out: What is my aunt like?

Evelyn replies first. “Very meticulous,” she says. “She needs things a certain way, and she will correct you the minute you do something wrong.”

I stare at my mother, who says nothing. I turn back to Evelyn and Carmen and prompt them. Such as?

Her clothes have to match, they say, down to the underwear. She keeps her bed pin-neat.

“She knows where everything is at,” Evelyn continues. “If we”—meaning her or any of her family members—“come here and we are washing a dish and we put it in the wrong place, she will tell us, Nope.”

I stare at my mother expectantly. Still nothing.

“Like, That doesn’t go there,” Evelyn explains.

At this point, my mother pipes up. “I don’t let anyone else load the dishwasher.”

Finally.

“That’s Adele,” Evelyn says.

Arthur Miller’s youngest son, Daniel, was institutionalized. He was born with Down syndrome in 1966 and sent to Southbury Training School, in Connecticut, when he was about 4 years old. Miller never once mentioned him in his memoir Timebends, and Miller’s New York Times obituary said not one word about him, naming three children, rather than four.

Erik Erikson, the storied developmental psychologist, also put his son with Down syndrome in an institution. He and his wife, Joan, told their other three children that their brother died shortly after he was born in 1944. They eventually told all three the truth, but not at the same time. Their oldest son learned first. That must have been quite a secret to keep.

Pearl S. Buck, the Nobel Prize winner for literature and author of The Good Earth, institutionalized her 9-year-old daughter, Carol, likely in 1929. But Buck was different: She regularly visited her daughter, and 21 years later had the courage to write about her experience in The Child Who Never Grew.

It is remarkable how many Americans have relations who were, at some point during the past century, sequestered from public view. They were warehoused, disappeared, roughly shorn from the family tree. “Delineated” is how the Georgetown disability-studies scholar Jennifer Natalya Fink puts it, meaning denied their proper place in their ancestral lineage.

With time, we would learn the terrible toll that institutionalization took on those individuals. But they weren’t the only ones who paid a price, Fink argues. So did their parents, their siblings, future generations. In hiding our disabled relations, she writes in her book All Our Families, we as a culture came to view disability “as an individual trauma to a singular family, rather than a common, collective, and normal experience of all families.”

This is precisely what happened to Fink. When her daughter was diagnosed with autism at 2 and a half, Fink was devastated, despite her liberal politics and enlightened attitude toward neurodiversity. Then she realized that the only disabled person she knew about in her family was a relative who’d been institutionalized in the early ’70s. This sent her on a journey to learn more about him—and in so doing, she discovered yet another disabled family member, in Scotland. Had she known far more about them—had they been an integral part of family discussions and photo albums (and, in the case of the American relative, family events)—she would have had a far richer, more expansive understanding of her ancestry; her own child’s disability would have seemed like “part of the warp and woof of our lineage,” as she writes, rather than an exception.

[From the October 2010 issue: Autism’s first child]

It occurred to me that this may have been one of my unconscious motives in trying to get to know Adele at such a late stage of my own life, in addition to simple curiosity about a lost relative. It would be a minor act of restitution, of relineation. Without any malevolent intent, we’d all colluded in one woman’s erasure. And our entire family had been the poorer for it.

After 27 years of institutionalization, Adele eventually moved to this group home, in upstate New York, in 1999. (Yoshiyuki Matsumura for The Atlantic)

Mass institutionalization wasn’t always the norm in the United States. During the colonial era, people with developmental and intellectual disabilities were integrated into most communities; in the early 1800s, with the advent of asylums and special schools, American educators hoped some could be cured and quickly returned to mainstream society.

But by the late 19th century, it became clear that intellectual disabilities couldn’t be vanquished simply by sending people to the right schools or asylums, and once the eugenics movement captured the public’s imagination, the fate of the country’s intellectually and developmentally disabled was sealed. “Undesirables” and “defectives” weren’t just institutionalized; they became the involuntary subjects of medical experiments, waking from mysterious surgeries to discover that they could no longer have children.

Cue the line from Buck v. Bell, the infamous 1927 Supreme Court case that upheld a Virginia statute permitting the sterilization of the so-called intellectually unfit: “Three generations of imbeciles are enough.”

Then the postwar era came along, with its apron-clad mothers and gray-flanneled fathers and all-around emphasis on a certain species of Americanness, a certain norm. “I’m speaking in huge generalities here,” says Kim E. Nielsen, the author of A Disability History of the United States, “but I think that push for social conformity exacerbated the incredible shame folks had about family members with intellectual and physical disabilities.” Institutionalizing such family members often became the most attractive—or viable—option. The stigma associated with having a different sort of child was too great; too often, schools wouldn’t have them, state-subsidized therapies weren’t available to them, and churches wouldn’t come to their aid. “There were no support structures at all,” Nielsen told me. “It was almost the opposite. There were anti-support structures.”

My aunt was born in that postwar period. But I don’t think my grandparents were capitulating to social pressure when they institutionalized Adele. They were simply listening to the advice of their doctors, authoritative men with white coats and granite faces who told them there was no point in keeping their daughter at home. According to my mother, my grandparents ferried Adele from one specialist to another, each declaring that she would never walk, never talk, never outgrow her diapers.

Which raised a question, on further reflection: Did my aunt’s condition have a name? As we were driving along, my mother told me she didn’t know; Adele had never had genetic testing.

Really? I asked. Even now? In the 2020s?

Really.

My grandparents are no longer with us. I know little of what they were told or how they felt when they were advised to send their second child away. But I imagine the script sounded similar to what a physician told Pearl S. Buck when she took Carol to the Mayo Clinic. “This child will be a burden on you all your life,” he said, according to Buck’s memoir. “Do not let her absorb you. Find a place where she can be happy and leave her there and live your own life.” She did as she was told. But it violated every ounce of her maternal intuition. “Perhaps the best way to put it,” she wrote, “is that I felt as though I were bleeding inwardly and desperately.”

“The parents who institutionalized their children—they too are survivors of institutionalization and victims of it,” Fink told me. “They were broken by this. It was not presented as a choice, for the most part. And even when it was, the medical establishment made it seem like institutionalization was the best choice.”

That applied to my grandmother, a tower of resilience, a woman who survived her father’s suicide, a brutal knife attack by a madman in a public restroom, and breast cancer at a relatively young age. She, like Buck, bled inwardly and desperately, in the most literal sense, developing an ulcer when my mom was 11 or 12. “Before Grandma died, she started talking about Adele, and for the first time that I can remember, she admitted that she felt terrible institutionalizing her,” my mother told me as we drove. “When I reminded her that if she had not institutionalized her, nobody in the family would’ve had a normal life, she said, ‘Yes, but she would’ve been with people who loved her.’ ”

One of the beneficiaries of that so-called normal life was, ostensibly, my mother. In his magisterial Far From the Tree, the writer Andrew Solomon notes that the most commonly cited rationale for institutionalization in those years was that neurotypical siblings would suffer—from shame, from attention starvation—if their disabled siblings were kept at home.

But it’s more complicated than that, isn’t it? My mother has never in her life uttered a cross word about her parents’ decision, and she’s hardly the sort to play the victim—she may have been trained as an opera singer, but she’s the least divalike person I know. Yet when I asked her what it was like when Adele left the house, she reflexively confirmed Fink’s hypothesis: She suffered. “It was like I lost an arm or a leg,” she said.

In his second memoir, Twin, the composer and pianist Allen Shawn writes about the trauma of losing his twin sister, Mary, to an institution when they were 8 years old. He describes her absence as “an unmourned death,” which closely matches my mother’s experience; he writes, too, that when she was sent away, it felt to him like a form of punishment, “an expulsion, an exile,” which my mother has also recounted in melancholy detail.

But what most captured my attention was Shawn’s analysis of how his sister affected his personality. “From an early age,” he writes, “I intuited that there were tensions surrounding Mary and instinctively took it upon myself to continue to be the easier child and avoid worrying my parents.”

That was my mother: the peerless good girl. High-achieving, rule-abiding, perfection-seeking. She skipped a grade. Until junior high, she chose practicing piano over playing with friends. In high school, she sang with the all-city chorus at Carnegie Hall.

Did she ever rebel? I asked her.

“Nah,” she said. “I was a goody-goody.”

To this day, my mother is the good girl. Buttoned-up, always reasonable, always in control. When hotter tempers flare around her, she defaults to a cool 66 degrees.

My mother was thrilled when her parents brought her newborn sister home. She remembers Adele scooching to different corners of her playpen to follow her as she ran in circles around it. She remembers sitting on the kitchen counter and watching my grandmother prepare bottles. She remembers my grandmother asking her to go on tiptoe into my grandparents’ room to see if Adele was asleep in her crib or still fussing. When my grandmother and grandfather began their frantic circuit of New York City’s specialists, wondering what could be done to help Adele, my mother had no clue that anything was the matter. Why would she? She was 6 years old. She’d always wanted a sibling and now she’d been gifted one. Adele was marvelous. Adele was perfect. Adele was her sister.

Left: Adele’s jewelry drawer. Right: An undated snapshot of Adele from the Ayala home. (Yoshiyuki Matsumura for The Atlantic)

When my grandparents left to take Adele to Willowbrook in March of 1953, they had no idea what to tell my mother, settling eventually on the story that they were taking her sister to “walking school.” My mom thought little of it. But for weeks, months, years, she kept expecting Adele to return. When is she coming back? she would regularly ask. We don’t know, my grandparents would reply.

At 8, my mother one day had a sudden meltdown—became unstrung, hysterical—and demanded much more loudly to know when Adele would be returning, pointing out that it was taking her an awfully long time to learn how to walk. That was the first time she saw my grandmother cry.

I don’t know, she still answered.

That same year, my great-grandmother, recently widowed, moved in with my grandparents. More specifically, she moved into my mother’s room, into the twin bed that Adele was supposed to occupy. My mother was furious about having to move her things, furious that she was losing her privacy, furious that her grandmother was moving into Adele’s bed. (Now she modified the question she regularly asked her parents: Where will Adele sleep when she comes home? And they would always reply: We’ll figure it out when the time comes.) Adele never did come home, and my grandparents would never try to have another child to fill that bed. My great-grandmother was there to stay.

My great-grandmother: Lord. She meant well, I suppose. But she had only a grade-school education and all the subtlety of a flyswatter. When my mother was 13, my great-grandmother told her that she had to be good enough for two children, smart enough for two children. “She kept emphasizing that my parents had lost a child,” my mother said. The pressure was awful.

By 13, of course, my mother had already figured out that something was different about her sister—and that Adele was never coming home. She’d heard the neighborhood kids whisper. One cruelly declared she’d heard Adele was in reform school. Consciously or unconsciously, my mother began handling the situation in her own way, volunteering in classrooms for kids with intellectual disabilities. Two liked her so much that she started tutoring them privately.

Yet throughout my mother’s childhood, my grandparents never once invited her to come with them to visit Adele. At first she was told no children were allowed; by the time her parents did ask her to join them, my mother, at that point an adult with children of her own, said no. She felt too raw, too tender about it. She didn’t want to unloose a current of ancient hurts. My grandparents never raised it again.

I asked if she ever sat around and just thought about Adele. “Oh, sure,” she told me. “I wonder what she would’ve been like if she weren’t disabled. I wonder what kind of relationship we would’ve had. I wonder whether I would’ve had nieces and nephews. Whether she would’ve had a husband, whether she would’ve had a good marriage, whether we would’ve been close, whether we would’ve lived near each other …”

And what ran through her mind, I asked, when she set eyes on Adele for the first time in 40 years, back in 1993? “I got deprived of having a real sibling,” she said.

For weeks afterward, I thought long and hard about this particular regret. Because my aunt was a real sibling. But no one of my mother’s generation was told to think this way. The disabled were dramatically underestimated and therefore criminally undercultivated: hidden in institutions, treated interchangeably, decanted of all humanity—spectral figures at best, relegated to the margins of society and memory. Even their closest family members were trained to forget them. After my mother came home from that visit, she scribbled six pages of impressions titled “I Have a Sister.” As if she were finally allowing it to register. To acknowledge this clandestine part of herself.

It is painful, almost too painful, to think about how differently my mother might have felt—how different her life and my aunt’s might have been—if they had been born today.

It’s June of 2022. I’ve just asked Adele how many pictures are sitting in front of me. My mother is skeptical. I ask again. “How many pictures? One …”

“One,” she repeats.

“Two …” I say.

“Two, three,” she finishes.

I look triumphantly at my mother.

My mother is now somewhere between skeptical and delighted. She tries herself. “How many fingers?” she asks, holding up her hand.

“Five.”

There are five.

“She understands,” I tell my mother.

“Well, either that or she memorized it.”

I show Adele two fingers and ask how many.

“Two.”

There’s a reason my mother is surprised. When we visited Adele in 1998, she barely spoke at all, much less showed that she had a notional sense of quantity. (She will today show us that she can count to 12 before she starts skipping around.) She wasn’t agitated back then when we saw her, not exactly. But she wasn’t relaxed. A transfixing report about Adele, sent to my mother not that long ago, suggests that one of the reasons she may be more alert now—and possesses a larger vocabulary—is because she’s on a better, less sedating regimen of medications.

But there’s another reason, I think, for my mother’s skepticism. Her whole life, she’d been given to understand that Adele’s condition was fixed—that her sister was consigned to a life without any deepening or growth. As she put it to me during that first car ride: “There would be no reason for her to get any more cognizant or any smarter.” That’s how everyone thought about disability back in my mother’s day. It’s my own generation—and the ones following—that came to see the brain as a miracle of plasticity, teachable and retrainable right into old age.

Yet Adele exceeded the expectations of all the specialists who gave dire predictions to my grandparents. She did learn to talk. She did become toilet-trained. Not only can she walk, but she dances a mean salsa, which she shows us now—and where she gets her sense of rhythm, I don’t know, but it’s great. (I personally dance like Elaine on Seinfeld.) Carmen and her husband, Juan, both from Puerto Rico, often play Latin music, and Adele jumps right in, with one hand on her belly and the other high and outward-facing, as if on the shoulder of an imaginary partner, all while shaking her hips and waggling her rear. Juan, whom she calls “Daddy,” often joins her.

I ask Carmen (whom she calls “Mommy”) whether Adele knows any Spanish, given that she and Juan speak it around the house. She says yes.

“¡Mamá! ” Carmen calls to Adele.

“What?”

“¿Tú quieres a papi? ” Do you love Daddy?

“What?”

“¿Tú quieres mucho a papi? ” Do you love Daddy a lot?

Adele nods emphatically.

“How much?” Carmen asks, switching to English. “How much you love Daddy? Let me see how much.”

“Four dollars.”

“Four dollars!” Carmen exclaims. “Oh my God.” Juan cracks up.

This kind of confusion is also typical of what we see in Adele throughout this, our second visit to the Ayala home. The report sent to my mother, which contains assessments of the institutions she’s inhabited and the day programs she’s attended throughout her life, continually notes that she has trouble grasping concepts—that she “can name various objects, but become[s] confused when long sentences are used.” It adds that she “often mumbles and is difficult to understand. If she does not understand what is being said to her, she simply says, ‘Yeah.’ ”

Juan and Carmen Ayala, Adele’s caretakers for 24 years, outside their home, June 21, 2023 (Yoshiyuki Matsumura for The Atlantic)

And we do have a hard time understanding her, and she does say “Yeah” to a number of our basic questions about her day, which can make getting to know her frustrating. But not when she becomes animated about things she likes. Summer is approaching, for instance, which means Adele will shortly be going to camp. She adores camp. I ask what she does there. “A game! And color.” Coloring, she means.

Other things Adele loves: Care Bears, stuffed animals, blingy baseball hats, shopping at Walmart, wearing perfume, preparing Juan’s nightclothes, tucking in her roommate each night.

Camp is the only time Carmen truly gets a break from caring for Adele and her two housemates—“I don’t like to leave them with nobody,” she explains to me—and even when she does go out, she generally doesn’t travel very far.

I stare at Carmen, now 80, and realize I already live in fear of the moment when she won’t be able to look after my aunt anymore. She has pulmonary hypertension and requires oxygen every night, and sometimes during the day. Yet she still cares for her three charges, whose pictures populate her photo albums right alongside those of her biological kids and grandkids. (My favorite: Adele standing next to a life-size Angry Bird.) Every day, she helps bathe them; makes their beds; shops for them; manages their various doctor appointments; takes them on outings; and, with Juan, prepares their breakfast, lunch, and dinner. Five out of seven days, this means rising at 5 a.m. In my aunt’s specific case, it means doing her hair each morning just the way she likes, putting in her earrings, and pureeing her food—Adele refuses to wear her dentures.

“When I was raising my kids, you know—it’s something that you miss,” Carmen explains.

Adele’s transition to the Ayala home wasn’t easy. Change is hard for her; she likes order. And when she arrived at Carmen’s house 23 years ago, she had scabies, which—in addition to raising questions about how well cared for she’d been in her previous home—meant that Carmen had to throw out everything she owned: her beloved stuffed animals, her clothes, her sheets. The adjustment became that much more traumatic; now my aunt truly had nothing. She threw tantrums. She once called Carmen “the B-word” (as Carmen puts it). Carmen phoned the home liaison. “And she says, ‘Carmen, easy. She’s a very good lady.’ ”

I ask how she earned my aunt’s trust. “I used to sit down with her and, you know, I used to talk to her a lot,” she says. “Talking, talking, talking to her. I’m telling her, ‘Come here, help me with this’ or ‘Help me with that.’ ”

Now, Carmen says, Adele can recite all of her grandchildren’s names and knows them by sight. She demonstrates, asking Adele to name everyone in her son Edgar’s family. “J.J., Lucas, Janet, Jessica …” Adele says. Neither of her housemates can do this. “It doesn’t matter how long she hasn’t seen them,” Evelyn, Carmen’s daughter, later tells me. “She knows who they are. She has a memory that she’ll meet somebody and she’ll remember their name. That’s her gift.”

Her gift? I am incredulous when I hear this. I keep thinking about what I’ve been told my whole adult life: that Adele never even recognized her own mother, at least as far as my mom understood it. Was this some kind of misapprehension? Maybe Adele had known my grandmother? Or maybe she hadn’t, but only because she’d been so aggressively narcotized?

As Carmen is talking with us, Adele gently rests her head on my mother’s shoulder and keeps it there. My mother, ordinarily a coil of discipline and control (always correct, always the good girl), looks so blissed out, so happy. When our visit is over, she tells me that this was her favorite part, Adele burrowing into her—and that she’s already thinking about when she can next see her again.

November 22, 1977: On medication due to head banging behaviors … She stares off into space, fixates on her hands, or hair and has the compulsion to smell people’s hair (Wassaic State School, Amenia, New York).

This is from the report sent to my mother, the one containing assessments of Adele from the different institutions she’s lived in and day programs she’s been a part of. I had a closer look at it maybe a week or two after our second visit.

February 11, 1986: (Psychotropic) Meds originally prescribed for screaming, hitting others, hitting self, extreme irritability (case-worker report from a day-treatment program, Ulster County, New York). It is noted that she is taking 150 milligrams daily of Mellaril, a first-generation antipsychotic.

October 1991: Outbursts look like psychosis … yell[s] out statements such as “Adele. Stop that!” or … “Leave me alone!” (summary of a report from a day program, Kingston, New York).

Late 2006: Psychiatry providers now recognize that there is psychosis present and Zyprexa is effectively treating this (summary of various evaluations).

The report is eight pages long. But you get the idea. The dear woman who nestled into my mother’s shoulder, waved at us until our car pulled out of sight, and recently wandered into Carmen’s room when she intuited that something was the matter (Carmen was unwell) also had an unremitting history, until not that long ago, of violent outbursts, self-harm, and psychosis.

Far be it from me to quarrel with those who evaluated her, including the esteemed men in white coats. But “psychosis” seemed, when I read this report, like an incomplete story, carrying with it the stench of laziness and One Flew Over the Cuckoo’s Nest reductivism—This person is difficult; let’s sedate her.

[John Donvan and Caren Zucker: What we learned from autism’s first child]

I could have been totally wrong. Based on this report, Adele certainly seemed, at times, to pose a danger to herself and others. But I found it curious that nowhere in this document did it say anything about a behavior that even my untrained eye detected immediately during our visits: My aunt does tons of harmless stimming, the repetitive motions frequently associated with autism. (She is especially fond of wiggling her fingers in front of her eyes.) In all the years of observational data about her—at least from what I saw here—there wasn’t a word about this, or the word autism itself. And autistic individuals, when frustrated or confronted with change or responding to excessive stimuli, can sometimes behave aggressively—or in ways that could be misread as psychotic.

And so, for that matter, can traumatized people.

It is December of 2022. A visiting nurse, Emane, whom Adele calls Batman, is swabbing Adele’s cheek. My aunt is being sweet and obedient; Emane, tender yet efficient. The sample will go to a lab in Marshfield, Wisconsin, that will sequence Adele’s genes.

Wendy Chung, the Boston Children’s Hospital geneticist with whom my mother and I are working, has warned us that there is only a one-in-three chance that Adele’s genetic test will come back with a condition or syndrome that has an actual name. But Chung has told me, as have a number of other experts, that there’s no other way to know for sure what Adele has. Dozens of things can cause microcephaly.

“But if you can find out exactly what she has,” Chung says, “then you can find a family—”

“—with a child who has it now,” I say.

Exactly, she says. And then I can compare how children with this syndrome fare today, versus how they fared in the 1950s.

My mother, Adele’s medical proxy, had to sign the forms to do this genetic test. My aunt was incapable of giving her own consent. And it occurs to me, as I sit here watching her so docilely allow Emane to rake her cheek with a Q-tip, that Adele has never been able to give her consent for anything, good or bad, her whole life. Not for the medications she has taken, which may or may not have helped her; not for mammograms, which, given our family history, are indisputably a good idea. Not for any of the things that were done to her while she was institutionalized until the age of 28; not for a trip to the mall to get ice cream.

She cannot consent to this profile, I suddenly realize with some alarm.

I spend quite a few weeks fretting about this. Only after speaking with Rosemarie Garland-Thomson, a renowned bioethicist and disability scholar, do I understand exactly why this is so. The last thing I want to do is hurt Adele. So not writing about her would be consistent with this wish, in keeping with the benevolent spirit of the Hippocratic oath: I’d be doing no harm. Whereas I am trying to do good, a much riskier proposition. “The problem with trying to do good,” she tells me, “is you don’t know how it’s going to come out.”

“I don’t have a legal right to know anything about my relatives who were disappeared,” says Jennifer Natalya Fink, who faced a similar ethical predicament when she wrote All Our Families. “But I have a moral right. And it’s a moral wrong, what was done to them. For us not to keep perpetuating those wrongs, we have to integrate knowledge of our disabled forebears.”

There remains a school of thought that privileges the privacy of people with intellectual disabilities above all else, particularly when it comes to something as delicate as divulging their medical history. And this argument may be right. I don’t know. But I ultimately decide, in the weeks after that swab, that integrating Adele means saying her name, and that understanding Adele—and her needs, and her potential, and whether she’s been treated with the appropriate care and dignity her whole life—means knowing and naming whatever syndrome she has. To refrain from doing so would simply mean more erasure. Worse: It would imply that her condition is shameful, and there’s been more than enough of that in my family.

To hell with shame.

I don’t know why this is, but I keep coming back to my mother’s deep desire for order. I had always assumed, I suppose, that it was a response to early trauma—a natural reaction to helplessly watching her sister get shipped away. But then I spent time with Adele and discovered that she shared the same trait, as if it were inscribed in the family genes.

I mention this one day to Evelyn, Carmen’s daughter, on the phone. She mulls it over. “But maybe it comes from the same place in Adele,” she says. “She was taken from her mother. She’s been controlled her whole life. You don’t know what she’s gone through, where she’s been.”

I sit in chastened silence for several seconds. She is absolutely right. Of course it could come from the same place. Adele no doubt also experienced savage trauma in her life. It was just less legible, because she had no clear way to convey it. For all I know, my aunt is a matryoshka doll of buried pain.

In January of 1972, Michael Wilkins met in a Staten Island diner with a young television journalist named Geraldo Rivera and discreetly handed him a key. It opened the doors to Building No. 6 at Willowbrook State School, from which Wilkins, a doctor, had recently been fired. He’d been encouraging the parents of the children in that ward—and others, from the sound of it—to organize for better living conditions. The administration didn’t like that very much.

In February of that year, Rivera’s half-hour exposé, “Willowbrook: The Last Great Disgrace,” aired on WABC-TV. It was sickening. To this day, it remains one of the most powerful testaments to the horrors and moral degeneracy of institutionalization. You can easily find it on YouTube.

Rivera was by no means the first to visit Willowbrook. Robert F. Kennedy had toured the place in 1965 and called it “a snake pit.” But because Rivera suddenly had access to one of the ghastliest dorms on campus, he and his camera crew could storm the premises unannounced. What he found—and what his viewers saw—was the kind of suffering one associates with early-Renaissance depictions of hell. The room was dark and bare. The children were naked, wailing, and rocking on the floor. Some were caked in their own feces. “How can I tell you about the way it smelled?” Rivera asked. “It smelled of filth, it smelled of disease, and it smelled of death.” He went on to interview Wilkins, who made it clear that Willowbrook wasn’t a “school” at all. “Their life is just hours and hours of endless nothing to do,” he said of the patients, adding that 100 percent of them contracted hepatitis within the first six months of moving in.

Actually, doctors were deliberately giving some of those children hepatitis. Even into the 1970s, the intellectually disabled were the subjects of government-funded medical experiments.

A group of eight children crammed into a crib prior to receiving physical
therapy, at Willowbrook State School, Staten Island, New York, January 1972 (Bill Pierce / Life Picture Collection / Shutterstock)

“Trauma is severe,” Wilkins told Rivera, “because these patients are left together on a ward—70 retarded people, basically unattended, fighting for a small scrap of paper on the floor to play with, fighting for the attention of the attendants.”

“Can the children be trained?” Rivera asked at one point.

“Yes,” the doctor said. “Every child can be trained. There’s no effort. We don’t know what these kids are capable of doing.”

This was where my aunt spent the formative period of her youth, from the time she was a toddler until she was 12 or 13 years old. Though she left eight years before Rivera and his crew arrived, it’s hard to imagine that the conditions were any better in her day. As Kim E. Nielsen writes in A Disability History of the United States, World War II was devastating for these institutions, which were hardly exemplary to begin with. The young men who worked there were shipped off to war, and most of the other employees found better-paying jobs and superior conditions in defense plants. These state facilities remained dreadfully poor-paying and understaffed from then on, their budgets forever in governors’ crosshairs.

“It was horrible,” Diana McCourt told me. She placed her daughter, Nina, born with severe autism, in Willowbrook in 1971. “She always smelled of urine. Everything smelled of urine. It’s like it was in the bricks and mortar.”

Diana and her husband, Malachy McCourt—the memoirist, actor, radio host, and famous New York pub owner—soon became outspoken activists and got involved in a class-action lawsuit against the institution. “I can’t quite tell you how much they didn’t want us to witness what was going on inside,” Malachy told me. When children were presented to their parents, they were taken to the entranceway of their dorm after being hastily dressed by attendants. “The clothes were never her clothes,” Diana said. “She was wearing whatever they could find in the pile.”

But most chilling of all was an offhand comment Diana made about the reports she received about her daughter. They were vague, she said, or demonstrably untrue, or maddeningly pedestrian—that she’d just gone to see the dentist, for instance. “The dentist,” Diana said, “was notorious for pulling people’s teeth.”

Wait, I said. Repeat that?

“Instead of dental care, they pulled the teeth out.”

Is that how my aunt lost her teeth?

Rivera noted in his special that the wards contained no toothbrushes that he could see.

I’d like to think that Adele’s life improved when she went to Wassaic State School in 1964. But New York produced, at that moment in time, nothing but hellholes. (Rivera also visited Letchworth Village in his documentary, an institution so awful that the McCourts steered clear of it, opting for Willowbrook instead.) Wassaic, too, had a reputation for being grim. At least one note from the report sent to my mother indicated that my aunt was very keen on leaving it. The date was January 18, 1980. Adele was by then 28 years old and had enough of a vocabulary to get her point across. “Clothes and suitcase?” she asked one of the clinicians.

Even when my aunt finally transferred to residential care, living in private homes and attending local programs in upstate New York, her treatment, until the ’90s, seemed less than ideal. In March of 1980, my aunt attended a day facility in an old factory that still had very loud electric and pneumatic machines, and the result was disastrous—“agitated, violent outbursts.” She was frequently taken to the “Quiet Room,” quilted with actual padded walls, where the staff would physically restrain her. This practice, the report notes, is no longer used in New York.

It took seven years and nine months before her team realized that the industrial cacophony was causing a good deal of the problem.

It is mid-December 2022. Adele’s genetic test has come back.

Her disorder does indeed have a name. Remarkably, it would not have had a name if we’d tested her just four years ago. But in 2020, a group of 50-plus researchers announced their discovery of Coffin-Siris syndrome 12, the “12” signifying a rare subtype within an already rare disorder. At the time they made this discovery, they could identify just 12 people in the world whose intellectual disability was caused by a mutation in this particular gene. Since then, says Scott Barish, the lead author of the paper announcing the finding, the number has climbed to somewhere between 30 and 50. So now, with my aunt, it’s that number plus one.

I immediately join a Facebook group for people with Coffin-Siris syndrome. I find only a few parents with children who have the same subtype as Adele. One couple lives in Moscow; another, Italy. But as soon as I post something about my aunt, there’s a flurry of replies from mothers and fathers of kids across the Coffin-Siris spectrum, most of them focused on the same thing: Adele’s age. Seventy-one! How thrilling that someone with Coffin-Siris syndrome could live that long! They want to know all about her, and what kind of health she is in. (Robust, I reply.)

Because Coffin-Siris syndrome, first described in 1970, can be caused by mutations in any one of a variety of genes, its manifestations vary. As a rule, though, the disorder involves some level of intellectual disability and developmental delays. Many people with Coffin-Siris syndrome also have “coarse facial features,” a phrase I’ve come to absolutely loathe; trouble with different organ systems; and underdeveloped pinkie fingers or toes (which is how, before genetic testing came along, a specialist might suspect a patient had it). Some, though by no means all, have microcephaly.

As far as I know, my aunt’s fingers and toes are all fully developed—Coffin-Siris syndrome 12 doesn’t seem to affect pinkies as much—and she doesn’t appear to have any organ trouble. She does, however, have microcephaly, as did four of the 12 subjects in the breakthrough paper about her specific subtype. But what really stood out to me in that study—and I mean really shone in a hue all its own—was this: Five of the dozen subjects displayed autistic traits.

In fact, the sparse literature on this subject suggests that a substantial portion of people with Coffin-Siris syndrome, no matter what genetic variant they’ve got, have a diagnosis of autism spectrum disorder as well.

Which is what I’ve suspected my aunt has had all along.

Knowing what I now do, I’m that much keener to find a family with a child who has Coffin-Siris syndrome 12 that would be willing to welcome me into their home. I call Barish, the lead author of the breakthrough paper, who heroically refers me to two. But one suddenly becomes shy and the other lives in Ireland. I start making my way through the other 50 co–first authors, co–corresponding authors, and just plain co-authors listed in the study. For a long while, I get nothing—turns out I’m talking to lab people, mostly—though I learn a lot about protein complexes and gene expression.

Then I reach Isabelle Thiffault, a molecular geneticist at Children’s Mercy Kansas City. By some extraordinary fluke, she has, in her database, four children with my aunt’s subtype. Two have microcephaly. One of those two is a 7-year-old girl named Emma, who lives in the Kansas City area.

I call her mom, Grace Feist. Would she mind if I paid a visit? She would not.

Grace and her husband, Jerry, took Emma in at seven months old and adopted her at a year and a half, knowing she had significant intellectual and developmental delays. They were prepared. They had fallen in love.

They also had ample state resources at their disposal, heavily subsidized or even free. More still: They had a rich universe of support groups to draw from, a sophisticated public school in their backyard, and the benefit of a culture that’s come a long way toward appreciating neurodiversity.

They were able to actively choose Emma. Whereas my grandparents—pressured by doctors, stamped by stigma, broken by exhaustion and confusion and pain—felt like they had no choice but to give their daughter away.

“So this is the best thing, because it will keep your hair nice and neat, and it doesn’t have any tingles.”

Tingles? I ask. It’s late February of 2023. We’re sitting in Emma’s bedroom in Lee’s Summit, Missouri, and she’s waving a new silk pillowcase at me.

“They’re like big stuff in your hair.” She gestures at her thick brown ponytail.

Tingles … oh, tangles!

She nods. “Guess what? Tangles will get in your hair. If Mommy’s brushing, I will be so mad.”

A few feet from her is a mounted poster that says For like Ever. As in: We’ve embraced this little girl for life—for, like, ever. Grace got it at T.J. Maxx shortly after Emma’s adoption became official.

Every time I hear Emma speak, I find it hard to believe that she and my aunt have a mutation in the same gene. She chatters merrily in full sentences, talks about her friends, and can express how she feels, often in ways that are surprising or quite poignant.

“Emma, are you the same as other kids or different?” Grace asks when we pick her up at school the next day.

“Different.”

“Why?” she asks.

“Because I’m the only one doing coloring. Not the other kids.”

“Do you like being different?” I ask her.

“No.”

“Why?” I ask.

“Because I want to be like other people.”

Emma Feist, who has the same syndrome as Adele, at her home outside Kansas City, Missouri, June 27, 2023 (Yoshiyuki Matsumura for The Atlantic)

But what I’m stuck on is all the ways that Emma started out like my aunt. When Grace and Jerry (a very involved father, just shy around reporters) first took her in at seven months to foster her, “she just lay there like a two-month-old baby,” Grace says. “We thought she was blind.” She didn’t make eye contact; she couldn’t roll. But in Bismarck, North Dakota, where Grace and Jerry were living at the time, Emma was entitled to all kinds of state-funded early intervention, as she is in Missouri. By nine months old, she was sitting unsupported, thanks to hours spent in a special tube swing to help her develop her core muscles.

Emma wasn’t as late to walk as Adele, but she didn’t take her first wobbly step until 16 months, and because it was 2016, rather than the early 1950s, physical therapists again intervened, having her toddle on uneven surfaces—pillows, cushions—to bolster muscle tone. She developed a smoother gait at about 2, but it took a couple more years for her to have the balance and coordination to walk normally, or to climb the stairs without help.

And speech! A huge surprise. Emma may be a bubbly ingenue, telling me all about indoor recess and her BFFs at school, but that’s hardly how she started. When she was 4 years old, she had only 100 words in her vocabulary, and that’s a generous estimate. “The way it was described was: She’s not deaf, but it’s almost the speech of someone who can’t hear,” Grace says. But Emma was working with state-funded speech therapists at the time, and they determined that she had auditory-processing disorder. When she got to her public school in Lee’s Summit—which gives extra speech and occupational therapy to those who need it, plus additional reading and math instruction—her vocabulary started to grow, slowly at first, and then in a rush. “I don’t know what it was,” Grace says.

Well. I have some idea. It was having a supportive school. It was having several hours a week of occupational, physical, and speech therapy from the time Emma was an infant. And it was Grace herself.

If you’re going to have an intellectual disability, who you really want as your mother is Grace Feist. Thirty-three, forever in flip-flops, and brimming with opinions—she has the concentrated energy of a honeybee—Grace has gone to exceptional lengths to tend to Emma’s education and psychological well-being. She’s decorated the basement playroom in pastels and muted colors. (“With visual-processing disorder, which Emma has, it’s not as overwhelming,” Grace explains.) Once a week, she takes Emma to vision therapy; she picks Emma up at school early every day to focus even more on her reading and math at home, without distraction. Grace is the queen of resourcefulness when it comes to all things pedagogical.

“I had a developmental pediatrician tell me: ‘There is no rock you haven’t looked under. This is what you have, and that’s okay,’ ” she says. “And he came from the best of intentions. But let me tell you, there were, like, 50 rocks I hadn’t looked under.”

As Grace and Emma give me a tour of Emma’s in-home classroom, all I can think is, My God, the effort. It contains a bucket of at least 80 fidget toys, many of them simple household items repurposed for anxious hands (silicone sink scrubbers, sewing bobbins). Emma sits on a purple wobble disk—it looks like a whoopee cushion the size of a satellite dish—to continue developing her core muscles. The walls are lined with giant flash cards from Secret Stories, a phonics-based reading program that makes intuitive sense and seems kind of fun, which is a good thing, because almost nothing demoralizes Emma more than trying to read. She can barely do it, though she’s trying.

“How does reading feel?” Grace asks.

“Mad,” Emma says. She’s wearing a resplendent lavender shirt with daisies on it. “Because if Mommy say, ‘Read this now,’ I would be super grumpy. Because they have hard words.” She’s pointing to a rudimentary book she’s been struggling with. “But some people say, ‘This is easy!’ ”

“How does that make you feel?” Grace asks.

“Mad. Sad.”

We move on to look at the shelves on the wall. They’re stocked with tactile learning tools: numbers made of sandpaper. Montessori cubes showing multiples of 10. Wax Wikki Stix to make letter shapes.

“If you change the approach to everything being multisensory—you see it, you hear it, you taste it, you touch it, you smell it—then you learn it,” Grace says. “Because you’re using all these neural pathways for the same information. Then everyone can learn.”

Perhaps I shouldn’t be surprised by Grace’s tenacity. She was raised in Florida, near Orlando, and had her first daughter, Chloe, at 16. She joined the Navy as a reservist in 2010 and worked for a time as a military police officer; then she worked security in an oil field in North Dakota, where she made great money and got to see the northern lights, as long as she was willing to put up with temperatures 20 degrees below zero. She met Jerry, then an information technologist, on the website Plenty of Fish. Today, he’s a professional YouTuber, with an inspirational-Christian channel that has 2.6 million subscribers. On December 28, 2016, they adopted Emma. In 2018, Grace gave birth to another daughter, Anna.

“Having Anna was the best thing for Emma,” Grace says, “because it really taught her how to play—with other kids, even with toys. That mimicking, that seeing what to do. Because when you would buy Emma toys, she would just line them up.”

Grace and Jerry have made enormous sacrifices on Emma’s behalf. The whole family has. They don’t travel, because Emma needs structure and control. They seldom go to restaurants, but when they do, they bring along her purple noise-canceling headphones—shooting earmuffs, purchased at Walmart—in case the sound overwhelms her; she needs to leave the restaurant several times a meal in any event, just to ground herself. “That’s how we live our life,” Grace says.

Their life used to be even more difficult. When she was younger, Emma, like my aunt, was inclined toward self-harm. When I first mention to Grace that Adele has no teeth—and that I fear they were removed at Willowbrook or Wassaic—Grace cuts me off: “Because she would bite herself until she bled?”

Sweet Jesus. I hadn’t even thought of that.

“Because Emma did,” Grace says. “I have pictures of it.”

She doesn’t show me those pictures. But she does show me a picture of 4-year-old Emma with a giant green-and-purple Frankenstein bruise bulging from her forehead. “She’d hit herself in the face,” Grace says. “She would bang her head on the floor, like, hard.”

And why does she think Emma did that? “She’s trapped in this mind where she knows what she wants, she knows what she needs, but you don’t know, and she doesn’t know how to tell you,” Grace says. “Is she aggressive? Yeah. I would be pissed too.”

I haven’t noticed any aggression in Emma—just a lot of sass, a gal who wants to show off her dance moves and introduce me to her stuffies. But again, this may be in part due to early-childhood interventions: Armies of occupational and speech therapists taught her how to be gentle, demonstrating how to talk kindly to dolls, and they encouraged Grace to teach Emma sign language, which she did, so that Emma could better express her wishes. As Emma got older, Grace read tons of books about emotional self-regulation, teaching her daughter to externalize her frustration. “We’d be in the middle of Walmart and she’d be stomping her feet,” Grace says. “But you know what? She wasn’t punching herself in the head.”

Today, Emma is flourishing. She may not yet know her phone number or address. She may not be able to tell you the names of the months or all the days of the week. But she’s making great strides, especially now that she’s learning at home. When I left her house in late February, she could count to 12; four months later, she was adding and subtracting. “Emma is going to thrive in her life,” Grace says. “Is she going to work at McDonald’s? Maybe. Is she gonna bag groceries? Maybe. But she’s gonna be okay.” Grace’s goal, she says, is to make sure that Emma’s mental health always comes first. “I have never met anyone more resilient or determined,” she adds.

As I prepare to leave, Grace gives me two gifts she’s purchased for my aunt. They’re things Emma likes: a lavender-scented unicorn Warmie (a stuffed animal you can safely heat in the microwave) and Pinch Me therapy dough that smells like oranges. “Anything scented is always really calming for Emma,” she explains.

Then Emma hands me a picture she’s drawn of me and Adele. Grace asks if she remembers why she drew it. “Yeah!” Emma says. “Because she has a hard time going to school.”

“Like you,” Grace says. Then: “You know what her aunt has?”

I assume she is going to say something about Coffin-Siris syndrome 12, but in a way that’s comprehensible to a child who has it too. But that isn’t where Grace is headed. “She has a woman who loves her and takes care of her because her mommy wasn’t able to. Just like you. Did you know that?”

Emma shakes her head.

I thank Grace and Emma for the gifts and head out to my rental car. I last maybe 30 seconds before losing it.

Is it a fair or genuine comparison, lining up my aunt and Emma side by side? Using Emma’s life story thus far as some kind of counterfactual history? To ask What if?

Yes and no, obviously.

There’s variability in all genetic disorders, including Coffin-Siris syndrome, even among those with mutations in the same gene. The original paper looking at my aunt’s specific subtype found that four out of the 12 individuals had microcephaly, for example, but one had macrocephaly; go figure. My aunt and Emma, though they both have subtype 12, clearly have different manifestations of it, a phenomenon one can observe just from looking at them: Emma is big for her age while my aunt is tiny; my aunt’s microcephaly is unignorable, because her sutures—the flexible material between a baby’s skull bones—closed prematurely, while Emma’s didn’t, making her microcephaly harder to detect. Her doctor says it may be easier to see as she gets older, though.

“If your aunt had had the treatments available today, I suspect her life would be very different,” says Bonnie Sullivan, the clinical geneticist at Children’s Mercy Kansas City who treats Emma. We’re speaking just days after I return home. She has looked at both Adele’s and Emma’s specific gene mutations. “She may not have been as high-functioning as Emma, but she could have maximized her potential, and her quality of life would’ve been a lot better.”

It seems impossible to quarrel with this assessment. The literature on disability is bursting with stories—heartening or depressing, depending on your point of view—about the advances made by people with intellectual disabilities once they were liberated from the medieval torments of their institutions. Studies as far back as the 1960s showed that children with Down syndrome begin to speak earlier and have higher IQs if they’re kept in home settings rather than institutional ones. Judith Scott, warehoused with Down syndrome in 1950 at the age of 7, famously became an artist once her twin sister established herself as her legal guardian 35 years later; her handsome fiber-art sculptures are now part of the permanent collections of the Museum of Modern Art and the Centre Pompidou.

But perhaps the best-known example of what happens to underloved, understimulated children are the orphans from Nicolae Ceauşescu’s Romania, where “child gulags” warehoused some 170,000 kids in appalling conditions. These children became tragic, unwilling conscripts in an inadvertent mass experiment in institutional neglect. When, 11 years after Ceauşescu’s execution, American researchers finally began to study 136 of them, putting half in foster settings and monitoring their development, the findings were bleak. Only 18 percent of those still in orphanages showed secure attachments by age 3 and a half, versus almost 50 percent of those who’d been transferred to family settings. By the time the kids still in orphanages had reached 16, more than 60 percent suffered from a psychiatric condition.

[From the July/August 2020 issue: 30 years ago, Romania deprived thousands of babies of human contact]

Which brings me back to my aunt’s repeated diagnoses, over the years, of psychosis. Maybe the condition was inevitable; maybe my aunt would have been psychotic no matter what kind of life she’d led. But when I watched those gruesome spools of footage from Willowbrook, all I could think was: Who wouldn’t be driven mad by such a place? After she left Willowbrook, Adele would abruptly shout “Stop hurting me!” for no apparent reason. Her care team assumed she was having hallucinations, a plausible postulate. But isn’t it equally plausible to theorize that she was reliving some unspeakable abuse from her past? Or, as the Georgetown philosopher and disability-studies professor Joel Michael Reynolds puts it (speaking my thoughts aloud): “Why isn’t that a completely reasonable response to PTSD?”

I’ll never know how Adele’s life could have turned out if she’d been born in 2015, as Emma was. All I have is a plague of questions.

What if a task force of occupational, speech, and physical therapists had shown up at my grandparents’ home each week, teaching Adele to walk, talk, and gently play with dolls?

What if she had spent her formative years not rotting in her own diapers or staring at the walls, but engaging in organized play, attending school, and basking in the company of adults who loved her?

Adele’s bedroom in the Ayala home (Yoshiyuki Matsumura for The Atlantic)

What if she’d had caretakers who inhaled book after book about emotional self-regulation and encouraged her to stomp her feet in department stores, rather than hit herself in the head?

And what if—what if—Adele had had a sister to play with?

It’s possible that all the interventions in the world would have done nothing, or next to it. Sullivan says she’s seen families recruit every imaginable expert and pour their energies into every conceivable intervention, yet with depressingly little to show for it. “There are some individuals with such severe manifestations of certain disorders that aggressive interventions don’t seem to change the outcome very much,” she says. “And it kills me. I truly grieve that result. Because the parents are trying everything.”

Similarly, there are children who wind up in residential care in spite of their parents’ best and most valiant efforts, because their risk of self-harm or of harming others remains too great. Parents are not, nor should they be expected to be, saints.

But my mind keeps looping back to that eight-page report my mother was sent about Adele’s history. The notes from Willowbrook, what few there are, tell a story all their own.

March 19, 1953: 21-month-old girl, quite small for her age … able to sit without support, to imitate movements, and is reported to be able to say “mama.” Adele’s IQ is measured at 52.

February 1, 1960: Microcephalic child of 8 ½ years with limited speech and partial echolalia. She is disoriented, and her acquaintance with simple objects in her surroundings is rather poor even for her overall mental level … Rate of development has markedly slowed down since the last evaluation 7 years ago. The consequent drop in IQ is considerable. This time it is measured at 27.

In her seven years of staring at those walls and rocking naked on the floor and never once, I assume, being shown a particle of love apart from those brief visits from my grandparents, Adele’s IQ dropped by almost half, startling even those who evaluated her. And yes, maybe this was destined to happen; maybe her smaller brain had less noticeable consequences in a toddler than in an 8-year-old.

But if my aunt could expand her vocabulary simply by going off a useless antipsychotic and onto Zyprexa—in middle age!—imagine what else she might have been capable of over the course of her life, if only she’d been given a half, a quarter, a hundredth of a chance.

It’s A sunny day in May of this year. I’m working on the back deck, nearing the end of writing this story. My cellphone rings. It’s Evelyn, Carmen’s daughter. She apologizes for calling me on a Sunday, but something serious has happened. Adele has collapsed; she’s in the hospital; it’s looking bad. Can I please locate my mom?

I leave messages everywhere and call Adele’s nurse, Emane, who I’ve been told is in the hospital with her. Emane is upset. No one will tell her anything. She’s been banished to the waiting room. They really need my mother, my aunt’s medical proxy.

A few minutes later, my mother phones them. A few minutes after that, my father conveys the news to me: Adele has died.

A heart attack, apparently. Just after breakfast.

I call Evelyn. She is crying. I stammer my way through this conversation, also crying, but mainly because we barely got to know my aunt, because this was supposed to be the beginning of something and not the end, because I know the grief I feel in no way matches Evelyn’s or Carmen’s or Juan’s. I am fluttering with an awkward mixture of shame, regret, sadness. “She was loved,” Evelyn keeps saying, over and over.

I know, I say. I just wish more by us.

“You came at exactly the right time,” Evelyn assures me. “I truly believe that.”

I hang up. God, they’re so gracious, this family. “We don’t judge,” Evelyn told us the first time we went up to see Adele at the Ayalas’. She meant it.

I phone my mother. She has lurched into administrative mode, planning the funeral. This is peak Mom, organizing things, surmounting the tough stuff by finding footholds in the small details. I wait a bit and call Carmen, though with some trepidation. My mother says she was unhelmed—bawling—when they first spoke. Carmen, calmer but still sobbing throughout our talk, tells me it’s true. “I broke down. I didn’t expect it to happen like that.”

We bury Adele three days later. It’s a gorgeous afternoon, perfect really, but the incongruities and dissonances of the hour are hard to ignore. Here we are, having a Jewish funeral for a woman who was never exposed to the Jewish tradition her whole life, while those whose lives have been most brutally upended—those who have spent the past 24 years loving and caring for Adele—are Catholics. My aunt will be buried next to her mother, forever reunited, while the woman whom she called “Mommy”—who just four nights ago rubbed Vicks VapoRub on her back and brought her tea because she had a cough—will go back to a house with an empty twin bed.

I’d like to think that in the afterlife, my grandmother’s heart will mend. That she will never again be told to send Adele away, that God will say to her: It’s okay, she’s lovely as she is; she’s my child too.

Problem is, I’m not much of a believer. I wish I was.

But the rabbi, Lisa Rubin, is brilliant, making something seamless out of the chaotic threads of my aunt’s life and the untidy grief of this motley group, managing to acknowledge the trauma of my mother, the trauma of my aunt, and the trauma of my grandparents, showing them the compassion they deserved their whole lives but probably never got and certainly never gave to themselves. And she honors the Ayala family in the most beautiful way, invoking the Jewish legend of the Lamed Vavniks, or 36 individuals in every generation who are the most righteous of all humanity. “They’re often called the hidden saints among us,” she says. “The people who do God’s work faithfully and humbly and whose virtue keeps the world spinning. They pour compassion and love on those around them with no desire for recognition.” To my family, she says, Carmen, Juan, and Evelyn are the Lamed Vavniks—“the hidden saints of Adele’s life.”

The Ayalas are all discreetly weeping. Carmen will later tell me: I will miss Adele so much.

My mother is invited to speak next. Evelyn will speak after her, then one of Adele’s housemates, then Adele’s psychologist, then her case manager—it’s wonderful that they’ve turned up.

But my mother … I’m not quite prepared. She starts with a version of something I’ve heard before—that losing Adele was a trauma that took decades to heal. But then she elaborates in a way she hasn’t even in our most intimate discussions: The three times she saw Adele back in the ’90s, she still felt disconnected from her. Adele’s previous caretakers had left my mom and my grandmother (and in one case, my mom and me) all alone with my aunt in their living room; they hadn’t said a thing about who Adele was or what her place was in their home. That changed, my mother says, when she saw Adele at the Ayalas’, discovering the charming, idiosyncratic character of her baby sister—and how very much she was loved, how she fit into a family.

“Those visits changed everything for me,” she says. “I opened my heart to Adele after shutting her out for nearly 70 years, and I found myself loving her again the same way I did as a 6-year-old child.” I hear a catch in her voice. She pauses, then regains her composure. “Now,” she continues, “I’ve lost Adele for the second time. And it hurts in a way I never expected. But I would not trade those visits for anything, because my life is so much richer. Adele has taught me to love in a whole new way.”

She finishes. And then, without warning, she rushes into the arms of my dad and starts crying in deep, seismic sobs. “I lost all those years,” she says into his shirt. I can barely make it out.

I’ve never seen her sense of control desert her in this way.

My mind wanders back to the last time I saw Adele. It was December, when Emane swabbed her cheek. I was alone then, just me and my recording device; my mother was in Florida. Carmen reminded Adele that I was her niece, her sister’s daughter. “Do you remember Rona?” she asked. “Yeah,” Adele said, but it wasn’t a convincing “yeah”—more like one of the blank ones she uttered when she didn’t understand.

We collected Adele’s DNA, and then I stuck around, curious to see how my aunt passed her afternoons and evenings. Spending that brief stretch with her meant experiencing time in a sensual way, almost, just feeling the thickness of the hours as they passed. We sat for a while together in the kitchen. Then we went upstairs to her bedroom, a warm, delightful space, her dresser tumbling with stuffed animals and her bed popping with a pink Disney-princess blanket. Adele carefully selected her outfit for the next day, matching every item of clothing, down to her socks.

There are many different shades of periwinkle blue. I had no idea.

Then she undressed, put on a plush lavender bathrobe, and headed into the shower to slowly bathe herself and wash her hair. Carmen supervised, but left her alone. After she’d dried herself off, Adele headed back into her room, closed all of the blinds (“for night”), and settled into her rocking chair. She spent the next half an hour, at least, just rocking. She often wiggled her fingers in front of her eyes. Occasionally she broke into a smile or chanted the same words to herself (“paint, pepper”) or gave a little laugh. She seemed content.

But in the shower—and I’ll never forget this, not for as long as my battered memory is intact—she babbled much more coherently. “Sister. Rona. Janet. Mirna. Rrrrrrrona”—she rolled the R—“A doll. A teddy bear.”

I’ve listened to that wisp of audio dozens of times, just to make sure I didn’t wish those words into existence.

Sister. Rona. She was already committing my mother’s name to memory, and to her own family tree, along with Carmen’s daughter and daughter-in-law, Mirna and Janet. Her ability to sweep in such things was, as Evelyn said, her gift. And now, we in our family will finally be committing her name to ours, which for so long—so pointlessly long—had a phantom bough.

Adele Halperin. Daughter, sister, aunt. June 30, 1951–May 7, 2023.

This article appears in the September 2023 print edition with the headline “The Ones We Sent Away.” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.

The Puzzling Gap Between How Old You Are and How Old You Think You Are

2023-02-23T06:00:00-05:00

This past Thanksgiving, I asked my mother how old she was in her head. She didn’t pause, didn’t look up, didn’t even ask me to repeat the question, which would have been natural, given that it was both syntactically awkward and a little odd. We were in my brother’s dining room, setting the table. My mother folded another napkin. “Forty-five,” she said.

She is 76.

Why do so many people have an immediate, intuitive grasp of this highly abstract concept—“subjective age,” it’s called—when randomly presented with it? It’s bizarre, if you think about it. Certainly most of us don’t believe ourselves to be shorter or taller than we actually are. We don’t think of ourselves as having smaller ears or longer noses or curlier hair. Most of us also know where our bodies are in space, what physiologists call “proprioception.”

Yet we seem to have an awfully rough go of locating ourselves in time. A friend, nearing 60, recently told me that whenever he looks in the mirror, he’s not so much unhappy with his appearance as startled by it—“as if there’s been some sort of error” were his exact words. (High-school reunions can have this same confusing effect. You look around at your lined and thickened classmates, wondering how they could have so violently capitulated to age; then you see photographs of yourself from that same event and realize: Oh.) The gulf between how old we are and how old we believe ourselves to be can often be measured in light-years—or at least a goodly number of old-fashioned Earth ones.

As one might suspect, there are studies that examine this phenomenon. (There’s a study for everything.) As one might also suspect, most of them are pretty unimaginative. Many have their origins in the field of gerontology, designed primarily with an eye toward health outcomes, which means they ask participants how old they feel, which those participants generally take to mean how old do you feel physically, which then leads to the rather unsurprising conclusion that if you feel older, you probably are, in the sense that you’re aging faster.

But “How old do you feel?” is an altogether different question from “How old are you in your head?” The most inspired paper I read about subjective age, from 2006, asked this of its 1,470 participants—in a Danish population (Denmark being the kind of place where studies like these would happen)—and what the two authors discovered is that adults over 40 perceive themselves to be, on average, about 20 percent younger than their actual age. “We ran this thing, and the data were gorgeous,” says David C. Rubin (75 in real life, 60 in his head), one of the paper’s authors and a psychology and neuroscience professor at Duke University. “It was just all these beautiful, smooth curves.”

Why we’re possessed of this urge to subtract is another matter. Rubin and his co-author, Dorthe Berntsen, didn’t make it the focus of this particular paper, and the researchers who do often propose a crude, predictable answer—namely, that lots of people consider aging a catastrophe, which, while true, seems to tell only a fraction of the story. You could just as well make a different case: that viewing yourself as younger is a form of optimism, rather than denialism. It says that you envision many generative years ahead of you, that you will not be written off, that your future is not one long, dreary corridor of locked doors.

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

I think of my own numbers, for instance—which, though a slight departure from the Rubin-Berntsen rule, are still within a reasonable range (or so Rubin assures me). I’m 53 in real life but suspended at 36 in my head, and if I stop my brain from doing its usual Tilt-A-Whirl for long enough, I land on the same explanation: At 36, I knew the broad contours of my life, but hadn’t yet filled them in. I was professionally established, but still brimmed with potential. I was paired off with my husband, but not yet lost in the marshes of a long marriage (and, okay, not yet a tiresome fishwife). I was soon to be pregnant, but not yet a mother fretting about eating habits, screen habits, study habits, the brutal folkways of adolescents, the porn merchants of the internet.

I was not yet on the gray turnpike of middle age, in other words.

“I’m 35,” wrote my friend Richard Primus, 53 in real life and a constitutional-law professor at the University of Michigan Law School. “I think it’s because that’s the age I was when my major life questions/statuses reached the resolutions/conditions in which they’ve since remained.” So: kind of like my answer, but more optimistically rendered. He continued: “Medieval Christian theologians asked the intriguing question ‘How old are people in heaven?’ The dominant answer: 33. Partly bc age of Jesus at crucifixion. But I think partly bc it feels like a kind of peak for the combined vigor-maturity index.”

The combined vigor-maturity index: Yes!

Richard was replying to me on Twitter, where I’d tossed out my query to the crowd: “How old are you in your head?” (Turns out I’m not the only one with this impulse; Sari Botton, the founder of Oldster Magazine, regularly publishes questionnaires she has issued to novelists, artists, and activists of a certain age, and this is the second question.) Ian Leslie, the author of Conflicted and two other social-science books (32 in his head, 51 in “boring old reality”), took a similar view to mine and Richard’s, but added an astute and humbling observation: Internally viewing yourself as substantially younger than you are can make for some serious social weirdness.

“30 year olds should be aware that for better or for worse, the 50 year old they’re talking to thinks they’re roughly the same age!” he wrote. “Was at a party over the summer where average was about 28 and I had to make a conscious effort to remember I wasn’t the same—they can tell of course, so it’s asymmetrical.”

Yes. They can tell. I’ve had this unsettling experience, seeing little difference between the 30-something before me and my 50-something self, when suddenly the 30-something will make a comment that betrays just how aware she is of the age gap between us, that this gap seems enormous, that in her eyes I may as well be Dame Judi Dench.

Although many hewed close to the Rubin-Berntsen rule, the replies I got on Twitter were not always about potential. Many carried with them a whiff of unexpected poignancy. Trauma sometimes played a role: One person was stuck at 32, unable to see themselves as any older than a sibling who’d died; another was stuck for a long time at age 12, the year her father joined a cult. (Rubin has written about this phenomenon too—the centrality of certain events to our memories, especially calamitous ones. Sometimes we freeze at the age of our traumas.)

My friend Alan, who is in his 50s, told me he thinks of himself as 38 because he still thinks of his 98-year-old father as 80. The writer Molly Jong-Fast replied that she’s 19 because that’s the age she got sober. One 36-year-old woman told me she thought the pandemic was a time thief—she simply hadn’t accumulated enough new experiences to justify the addition of more chronological years—which made her younger in her head sometimes, as if she were willing back the clock.

When I mentioned to a colleague that I was writing this piece, he told me he was 12 in his head, not because he thinks of himself as a child, but because his inner self has remained unchanged as he’s aged; it’s “the same consciousness as always since I became conscious.” His words instantly brought to mind a line from the opening pages of Milan Kundera’s Immortality: “There is a certain part of all of us that lives outside of time.”

Of course, not everyone I spoke with viewed themselves as younger. There were a few old souls, something I would have once said about myself. I felt 40 at 10, when the gossip and cliquishness of other little girls seemed not just cruel but dull; I felt 40 at 22, when I barely went to bars; I felt 40 at 25, when I started accumulating noncollege friends and realized I was partial to older people’s company. And when I turned 40, I was genuinely relieved, as if I’d finally achieved some kind of cosmic internal-external temporal alignment.

[From the March 2022 issue: It’s your friends who break your heart]

But over time, I rolled backwards. Other people do this too, just starting at a younger age—25—and Rubin has a theory about why this might be. Adolescence and emerging adulthood are times dense with firsts (first kiss, first time having sex, first love, first foray into the world without your parents’ watchful gaze); they are also times when our brains, for a variety of neurodevelopmental reasons, are inclined to feel things more intensely, especially the devil’s buzz of a good, foolhardy risk. The uniqueness and density of these periods have manifested themselves in other areas of Rubin’s research. Years ago, he and other researchers showed that adults have an outsize number of memories from the ages of about 15 to 25. They called this phenomenon “the reminiscence bump.” (This is generally used to explain why we’re so responsive to the music of our adolescence—which in my case means my iPhone is loaded with a lot more Duran Duran songs than any dignified person should admit.)

Rubin and Berntsen made a second intriguing discovery in their work on subjective age: People younger than 25 mainly said they felt older than they are, not younger—which, again, makes sense if you’ve had even a passing acquaintance with a 10-year-old, a teenager, a 21-year-old. They’re eager for more independence and to be taken more seriously; in their head, they’re ready for both, though their prefrontal cortex is basically a bunch of unripe bananas.

In Rubin and Berntsen’s 2006 study, socioeconomic status, gender, and education did not significantly affect their data. One wonders if this has something to do with the fact that they conducted their research in Denmark, a country with substantially less income inequality and racial heterogeneity than our own.

The picture changes when there’s more variety: A 2021 meta-analysis of 294 papers examining subjective-age data from across the globe found that the discrepancy between chronological age and internal age was greatest in the United States, Western Europe, and Australia/Oceania. Asia had a smaller gap. Africa had the smallest, which could be read as an economic sign (poverty might play a role) but also a cultural one: Elders in collectivist societies are accorded more respect and have more extended-family support.

“Could it be that feeling younger is actually dysfunctional and no longer helping you focus on what’s going on? That’s the more complicated question,” says Hans-Werner Wahl (69 in real life, 55 in his head), a co-author of the meta-analysis. “A lower subjective age may be predictive of better health. But there are other populations around the globe for whom it is not necessary to feel younger. And they’re not less healthy.”

This seems to be the conclusion of Becca Levy, a professor of epidemiology and psychology at the Yale School of Public Health. As a young graduate student, she went to Japan and couldn’t help noticing not just that people lived longer, but that their attitude toward aging was more positive—and her decades of research since have shown a very persuasive connection between the two. In the introduction to her book, Breaking the Age Code, she describes newsstands in Tokyo lined with manga books filled with story lines about older people falling in love. She reports wandering Tokyo on Keiro No Hi, or “Respect for the Aged Day,” and seeing people in their 70s and 80s lifting weights in the park. She talks about music classes filled with 75-year-olds learning how to play electric slide guitar.

At first blush, Levy’s scholarship may seem to quarrel with the literature of subjective age. But maybe it’s a complement. What underpins them both is an enduring sense of agency: If you mentally view yourself as younger—if you believe you have a few pivots left—you still see yourself as useful; if you believe that aging itself is valuable, an added good, then you also see yourself as useful. In a better world, older people would feel more treasured, certainly. But even now, a good many of us seem capable of combining the two ideas, merging acceptance of our age with a sense of hope. When reading over the many Oldster questionnaires, I was struck by how many people said that their present age was their favorite one. A reassuring number of respondents didn’t want to trade their hard-earned wisdom—or humility, or self-acceptance, whatever they had accrued along the way—for some earlier moment.

Recently, I wrote to Margaret Atwood, asking her how old she is in her head. In the few interactions I’ve had with her, she seems quite sanguine about aging. Her reply:

At 53 you worry about being old compared to younger people. At 83 you enjoy the moment, and time travel here and there in the past 8 decades. You don’t fret about seeming old, because hey, you really are old! You and your friends make Old jokes. You have more fun than at 53, in some ways. Wait, you’ll see! :)

This article appears in the April 2023 print edition with the headline “The Age in Your Head.” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.

John Fetterman and the Performance of Wellness

2023-02-17T14:32:00-05:00

Yesterday, Senator John Fetterman, the Pennsylvania Democrat who suffered a stroke at the near-peak of his political campaign last May, announced that he was checking into Walter Reed National Military Medical Center to treat a case of obdurate depression. The discussion since then (at least in the mainstream press, and among his Democratic colleagues) has focused, rightly, on what a sea change this is—how it is now possible, as a national politician, to openly declare your mental suffering and do something about it without fear of calamitous repercussions. The benighted days of secrets and shaming are gone; the experience of Senator Thomas Eagleton, who for 18 days in 1972 was George McGovern’s running mate until it was discovered that he’d undergone electroconvulsive therapy years earlier, is now unthinkable.

In fact, Fetterman’s office could have blamed his depression on his stroke, which is a common cause of depression. Instead, it made a point of saying that Fetterman had had depression in the past.

But I would like to focus on another aspect of this chapter in Fetterman’s life. As a national figure, Fetterman was continuously, relentlessly obligated to perform a certain role—that of a competent, confident politician. More than that, possibly: an accessible, obliging politician. The post–January 6 tightening of security notwithstanding, Congress remains one of the most open, porous environments in the country. It’s a place where reporters roam with almost unconstrained access, corralling senators in hallways, committee rooms, the elevator bank just off the Senate floor. Tourists and visiting constituents and lobbyists buzz about.

[John Hendrickson: Don’t patronize Fetterman]

As a senator, you can never not be on, in other words. Your life is an Ironman Triathlon of outward-facing obligations: constituent sit-downs, committee meetings, caucus lunches, votes on the floor, home-state parades and fairs and school visits and town halls and barbecues where you’re asked to don a puffy chef’s hat.

I have often written about the usefulness of the sociologist Erving Goffman’s distinction between “front-stage” and backstage selves when it comes to politics. To briefly summarize: Our front-stage selves are controlled, formal, fit for public consumption; our backstage selves are unvarnished, less filtered, generally reserved for intimates—the people we are when we drop the facade. (For anyone who’s thirsty for more, see Goffman’s The Presentation of Self in Everyday Life.)

Politicians, particularly members of Congress, are almost always required to be front-stage creatures, for exactly the reasons I have described: all those damn committee meetings, constituent sit-downs, puffy hats. We tend to expect a certain level of formality from them—and absent that, a certain consistency of performance.

But depression, almost by definition, is a backstage emotion: lonely, prickly, uncomely. When you’re in the throes of it—something I know a thing or two about—it positively defies salable shtick. What this means is that every high-functioning depressed person has a self they try very hard to conceal. It is work performing your wellness—for some people, it’s more exhausting than their actual day job.

And from what little we know, that seemed to be the case for Fetterman. It is said that he was unhappy that he missed out on (and still hasn’t gotten) the time he needed to properly recover from his stroke. And now here he is, in one of the most public-facing jobs imaginable—possibly even more so than the presidency, where you have the luxury of retreating into the antiqued seclusion of the White House, away from reporters and constituents.

On top of this, Fetterman was spending his weekdays alone, apart from his wife and three children, who are still in Braddock, Pennsylvania. For most of the week, he doesn’t have his loved ones by his side, the people with whom he could safely pull off the mask. Instead, he had to perform all day long, then return to an empty home.

Illness, too, can be cruelly isolating. Fetterman was trying valiantly to adapt to a demanding, high-intensity job with closed-captioning at his desk and audio-to-text transcriptions of committee hearings; he carries a tablet that converts what his colleagues say into text. This technological wizardry might make his work easier to do, but it also sets him apart, accentuating how different his lot is from everyone else’s. I’m guessing it isn’t easy to experience this difference during every interaction he has—not when his condition is so new, not when he hasn’t had ample time to adjust.

[John Hendrickson: The Fetterman-Oz debate was a Rorschach test]

Fetterman has basically been forced to contend with the effects of a severe brain trauma while working an absurdly demanding job in one of the most polarized and toxic political climates the country has ever known.

In the coming weeks or months, my suspicion is that most of his Democratic colleagues will be supportive of Fetterman, while the hooligans at Fox and in the even-further-right precincts of the Trump underworld will say that he’s unfit to serve. It’s possible, though, that some of his most ardent supporters will quietly wonder the same. And maybe the demands of the Senate will prove to be too much for him. But Fetterman was handily elected by Pennsylvanians, who knew quite well they were electing a man who had suffered a life-altering upset to his health. Now the question is whether they’ll allow him to acclimate on his own timetable and terms. And that may be the next test of how far we’ve come as a nation in thinking about mental, physical, and spiritual health.

What Not to Ask Me About My Long COVID

2023-02-15T07:00:00-05:00

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

Before I got long COVID, I tuned out virtually all stories about it. They were tedious because I was tired of the pandemic, because we are all tired of the pandemic, because it is as familiar as rain and honestly just as dreary; I can hardly believe we once called the coronavirus novel.

Today, I still tune out most long-COVID stories, though for different reasons. (Busman’s holiday. I outsource the job to my family.) But millions of us suffer from long COVID (“the pandemic after the pandemic,” as a Washington Post editorial put it last week), so today I’d like to discuss … etiquette. That’s right: manners. I’d like to offer a civilian’s guide to navigating the sensitivities of those furious, frustrated, irritable millions—and to better understanding them.

The fact is, no one—including doctors (especially doctors, dear God, these doctors)—knows the right things to say to those of us who have long COVID, because no one seems to be thinking about this wretched condition in the right way. Nor does anyone seem to understand the unique psychological suffering associated with this condition. It’s hideous—arguably worse than some of the very worst of our physical symptoms. Which, let’s face it, are already pretty grim.

[Read: The future of long COVID]

Shall we begin? For starters: Asking “Are you doing any better?” doesn’t help. One has to think of long COVID as a chronic illness—cause unknown, cure unknown, recovery timetable (assuming there is one) unknown. I had to explain this early on to my parents. While I appreciated their frequent texts inquiring about whether I’d seen any improvements, they were a certain recipe for misery. I wasn’t; I’m not. I’m on month eight and still declining in many crucial respects. “How are your symptoms today?” is a far better question.

A related-but-different point: Long COVID symptoms often change. This syndrome is wily, protean—imagine a mischief of mice moving through the walls of your house and laying waste to different bits of circuitry and infrastructure as they go. That’s what I’m experiencing. In the past month, I started developing blood-pressure problems when I stood up. Good times! The month before that, I became breathless when I walked. Why? No clue. But now it’s a new feature of my life.

So friends, relations, colleagues, acquaintances: If I have a new symptom, just roll with it, and maybe approach it with curiosity. Horror or pity—Oh my God, I thought you’d be better by now!—doesn’t help; it just underscores my rotten luck.

Speaking of which: Can we talk depression for a second? It’s overwhelming, what I’m experiencing. Ghastly. Some of it is probably biologically driven, caused by COVID itself—something I should have realized, in hindsight, at week three, when I was curled in the fetal position, bawling uncontrollably. (It was far too early for me to be despairing about my COVID symptoms. An MRI at week eight would reveal lingering brain inflammation, a potential marker of depression.) But some of my misery is the realization that everyone else is leading their lives and I’m not, and I don’t know if I ever will again.

Can we also talk shame and resentment for a second? Those are overwhelming too. Speaking only for myself here, I feel like this was a worldwide test that I and I alone among my cohort managed to fail. Pretty much everyone I know got the Omicron variant of COVID and beat it in a matter of days or weeks; I didn’t. When I learned that Joe Biden quickly got over his own case of Omicron, I burst into tears. How did an octogenarian manage to do that while I’ve been suffering for seven and a half months?

I’m not proud of this.

A corollary: I find myself filtering a lot less of what I say these days, because this state of awfulness may be how I spend the rest of my life. I’ve become Bill Murray in the bathtub in Groundhog Day, that toaster nestled under his arm.

Here’s an anecdote my healthier, more circumspect self would have once filtered, rather than coyly starting a game of guess-who, but whyever not, I’ll share it: A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with long COVID. His reply: “Is that the excuse everyone at The Atlantic uses when they’re unproductive?” It was a staggeringly insensitive thing to say. Even now, I find myself staring into space, wondering if that moment was real. (It was.)

[Read: Trying to stop long COVID before it even starts]

In case you’re wondering how I’m spending my days: in bed, often. I write from there, like Proust (except that I don’t write like Proust). Or I’m going to doctors. That’s your job if you have long COVID, seeing doctors. If your vestibular system is out of whack, you see a series of ENTs, then neurologists. If your heart is galloping along or doing weird things, you see a cardiologist. If you can’t breathe, you get chest X-rays, see a pulmonologist. You do rehab. You try to exercise a little, because you know you’re supposed to, but who are we kidding, it’s awful just trying. You try all kinds of alternative treatments (massage, acupuncture, supplements by the fistful in my case) and spend lots of time politely listening to people tell you about their favorite naturopaths. You get MRIs and CT scans and sonograms, and still no one knows a goddamn thing.

What’s sometimes confusing to people is that I can pass for well. But what it takes for me to seem like my usual self if I meet a friend for a cup of tea, at, say, 4 p.m.: 15 milligrams of meloxicam (an anti-inflammatory), 600 milligrams of gabapentin (a pain blocker), and 0.5 milligrams of klonopin (a vestibular suppressant). Also, an industrial-strength antidepressant. Also also, two blood-pressure stabilizers. Then I’m Humpty Dumptied enough to socialize.

Steroids work, too, but they’re bad for you in the long term and turn me into an irritable shrew.

Moving on: Don’t ask what it’s like to have long COVID, at least not with the naked prurience that one professional acquaintance of mine recently did when I made the mistake of briefly dropping in on a colleague’s book party. She cornered me and wouldn’t stop with her Gatling-gun questions, even when I told her the room was too loud and speaking hurt my head. “Just one more thing,” she kept saying.

“No more things,” I said as I backed toward the door.

But in the interest of time and efficiency—“see my piece in The Atlantic,” I’ll say from now on—herein I give you a condensed version of what long COVID has been like for me:

The COVID was the easiest part. I was practically asymptomatic. I walked the dog, drove four hours in the car, hiked the beach, canoed. This was in late June. The doctors in my life should have understood that this spooky absence of symptoms was an ominous sign—my immune-compromised self wasn’t putting up a fight when it should have. Instead, they all brushed off my concerns when I rang. To a person, they steered me away from Paxlovid.

Remember that crazy national moment when doctors were being weird about Paxlovid? And were really down on it? I got COVID in that brief window.

I cannot tell you how often I go back to that moment and take Paxlovid. It’s the world’s most unproductive form of magical thinking, trying to undetonate this bomb. And yet I do.

Anyway, around day 10, things went south. I was suddenly dizzy every moment of the day. The world looked like The Blair Witch Project, always bouncing. It bounced when I chewed. Then came the tinnitus, the ear fullness. Ménière’s disease seemed likely.

Google Ménière’s disease. It’s very challenging. I have nothing but compassion for those who have it.

Many elaborate tests later, I turned out not to have it.

The nature of my dizziness changed, feeling more like a gyroscope was spinning in my head, or like I was being pulled slantwise by magnetic raindrops, every damn second. Then came the whale of all symptoms: My head started to vibrate, painfully, every time I walked or talked.

[Read: Long COVID has forced a reckoning for one of medicine’s most neglected diseases]

People have asked me a lot about this. I really don’t know how else to explain it. I mean, imagine a tuning fork inside your brain. Every time I take a step, I feel it in my skull. Ditto when I speak. My latest combo of meds blunts most of the pain that comes with it. But the vibrating remains, and it’s driving me mad. I’m waiting on my insurance company to approve Botox injections to my skull. (Oh, the irony of being a 53-year-old woman praying for Botox in a place where it will have no visible aesthetic benefit.)

Then my standing heart rate got too fast. (Now it’s fine.) Then my blood pressure spiked when I stood, plus other forms of autonomic dysregulation. My eyeballs spin freely in their sockets for the first 20 minutes of each morning, for instance. Then my chest started to ache. Maybe from the blood-pressure spikes, maybe something else. And I’m short of breath now when I walk, as I said.

You see the problem, right? My aching chest, my breathlessness—it all means more doctors. And I am really, really sick of doctors. Most of them know nothing, and if they can’t help you, they have little time for you. Many of them dramatically underestimate quality of life as an issue.

The shape-shifting nature of long-COVID symptoms also makes our medical system ill-suited to deal with long COVID. (Actually, it’s ill-suited for a thousand reasons. But this is one.) Telling your long-COVID story in 15 minutes, which is what most doctors have for you, is not possible. You develop shorthand. You resort to metaphors. Both are problems. One doctor asked if I thought there was an actual gyroscope in my head, for instance. “Uh, this is a vestibular problem I’m describing,” I said, “not a psychiatric one.” Asshole.

The worst part? Because no one understands what causes long COVID, even the best doctors can only treat your symptoms separately. My blood pressure gets two medications. My vibrating head gets a third. My vestibular symptoms get a fourth. My pain gets a fifth. Inflammation gets a sixth. The microclots I may or may not have, which may or may not cause long COVID, require three different supplements, which may or may not work.

This said, the long-COVID team at New York’s Mount Sinai Hospital at least thinks holistically, even if they don’t know what lurks at the heart of my problems. I feel lucky to be under their care (plus two dogged and creative immunologists at Columbia Presbyterian). I cannot imagine what it’s like for the millions of Americans who don’t have access to the minds and resources I do.

If you encounter them, remember that they are suffering. Remember that they don’t want to be pitied. Remember that they’ve each developed their own idiosyncratic strategies to cope, and that they don’t need to be told to do more or to do less or to approach things differently. Be gentle. Disease eventually ensnares all of us; when it happens to you, you’ll crave the same.

American Rasputin

2022-06-06T06:00:00-04:00

Photographs by Chris Buck

I sometimes look at the long ribbons of texts I’ve gotten from Steve Bannon and wonder whether they couldn’t tell the whole story all on their own.

There are certainly enough of them. He says he has five phones, two encrypted, and he’s forever pecking away, issuing pronunciamentos with incontinent abandon—after midnight; during commercial breaks for his show, War Room; sometimes while the broadcast is still live.

You can discern much of Bannon’s mad character and contradictions in these exchanges. The chaos and the focus, the pugnacity and the enthusiasm, the transparency and the industrial-grade bullshit. Also, the mania: logomania, arithmomania, monomania (he’d likely cop to all of these, especially that last one—he’s the first to say that one of the features of his show is “wash rinse repeat”). Garden-variety hypermania (with a generous assist from espressos). And last of all, perhaps above all else, straight-up megalomania, which even those who profess affection for the man can see, though it appears to be a problem only for those who believe, as I do, that he’s attempting to insert a lit bomb into the mouth of American democracy.

March 28, 9:49 a.m.

I’m taking out Murkowski today and forcing her to vote NO on judge Jackson

He’s talking about the Senate confirmation vote on Ketanji Brown Jackson’s Supreme Court nomination, and uncertainty about whether Lisa Murkowski, the senior Republican senator from Alaska, will vote yes. I tell him I’ll be interested to see if Murkowski responds.

After today she’s a NO

Murkowski did not vote no. I sent him a New York Times story on April 4 to tweak him. Wasn’t your show supposed to flip her? I asked.

Please

Goalposts. They’re always movable.

This is a huge issue that I’m about to make toxic

Standby

And so it went that day: The work before us is to weaponize this vote. Twice he used this word, weaponize, in talking about his plan to flip Senate seats in Nevada and Arizona—adding, I can clearly see how to win.

There were times when my text interactions with Bannon felt like one prolonged Turing test. There were times when he almost resembled a regular human. He would talk about missing his father, who died in January at 100, and how strange it was to be in his childhood home alone. (Just sat in the family room for hours.) He would fret about his weight and express pleasure when a newspaper used a photo that did not, for once, make him look god-awful, like some deranged incel by way of Maurice Sendak.

I’m impressed by my photo!!

Innnnnnnnnnnnteresting, I wrote. Why?

Can u see the photo?

Yup

You don’t like it?

I’ve never seen it before now

I want to know why you like it

I don’t look so (Covid 19) UNKEMPT

Does this mean you have actual feelings?

Of course it doesn’t!

But it still pleases you to look nice.

Stop

One day he called my colleague Anne Applebaum a fucking KLOWN. (He had previously referred to her work as “brilliant,” but something she’d just said about Hunter Biden’s laptop didn’t agree with him.) Later, while reflecting on this comment, I asked him: Who’s been his most worthy intellectual sparring partner so far?

You’ve watched the debates

I destroy folks except I always pull back to not be obnoxious

Did he care to name names?

Henry Levi in Athens.

Blood on the floor.

Bernard-Henri Lévy, he meant, the famous French intellectual.

Biggest disappointment of my life

Made him eat this

He sent me a picture of Lévy’s book The Empire and the Five Kings.

I watched that debate. This was not at all my impression. But winning is certainly an all-consuming preoccupation for Bannon, just as it is for his former boss. Winning debates. Winning elections—in France, in Hungary, in South Texas, where Hispanic voters are migrating into the R column with impressive speed. One night, as I was reading in bed, I heard the ping of my phone: Bannon had sent me a story from a Rio Grande Valley website, reporting that Republican turnout at early-voting polls was up up up.

Kaboom

And good night

It was 11:37 p.m. Never too late to own the libs.

One of the surest ways to get under Bannon’s skin is to call War Room a podcast. It is not a podcast, he is always telling me; it is a TV show, with tons of visual components that listeners-only miss—the charts explaining economics, the montages of news clips that form his cold opens, the live shots of his correspondents. He broadcasts from the ground floor of a Washington, D.C., townhouse, and there are cameras, bright lights, a backdrop that devoted viewers know well: a fireplace mantel displaying a gold-framed picture of Jesus and a black-and-white poster saying THERE ARE NO CONSPIRACIES, BUT THERE ARE NO COINCIDENCES. — STEPHEN K BANNON.

But since January 8, 2021, when YouTube pulled his show for spreading falsehoods about the 2020 election, viewing War Room has become harder to do. It’s still available in the far-right online ecosphere, and it’s streamable on various TV platforms, including Channel 240 of Pluto TV, but that seems like its own sad metaphor—War Room as a small, demoted planetoid, available mainly in the icier regions of the broadcast cosmos. The whole operation has an amusing shoestring quality to it. The audio occasionally cuts out or sounds like it’s bubbling through a fish tank; two of Bannon’s phones buzz throughout the show; the segment openers aren’t always ready when he needs them. It’s a bit like Father Coughlin stumbled into Wayne and Garth’s basement.

Bannon started War Room in October 2019, initially to fight Donald Trump’s first impeachment; in January 2020, the show morphed into War Room: Pandemic. But over time, the show became a guided tour through Bannon’s gallery of obsessions: the stolen election, the Biden-family syndicate, the invaders at the southern border, the evil Chinese Communist Party, the stolen election, draconian COVID mandates, the folly of Modern Monetary Theory, the stolen election.

[David Frum: Steve Bannon knows exactly what he’s doing]

But Bannon is more than just a broadcaster. He’s a televangelist, an Iago, a canny political operative with activist machinations. With almost every episode, he hopes to transform his audience into an army of the righteous—one that will undo the “illegitimate Biden regime” and replace the current GOP infrastructure, still riddled with institutionalist RINO pushovers, with adamantine Trumpists who believe that 2020 rightfully belonged to them. “The show’s not about entertainment,” he told his audience in one of his typical pep talks. “That’s not us. This is for the hard-cores, okay? … The people who say, ‘No no no no no, not on our watch.’ ” He goads his followers into action with a combination of praise, flattery, and drill-sergeant phrases he repeats like a catechism: Put your shoulder to the wheel! Be a force multiplier! And especially: Use your agency!

And how, specifically, does Bannon propose that his audience use its agency? By taking back their government from the ground up—as election inspectors, as school-board members, and, most practically of all, as precinct-committee members. Bannon may be the country’s biggest exponent of the “precinct strategy,” first developed by the Republican lawyer Dan Schultz, which encourages interested citizens to sign up for the grunt work of elections, because it can lead to the big stuff, like helping decide who oversees them. War Room regularly features citizen activists who have figured out how to work the system. After each segment, Bannon asks: “How can people get to you? How do they find out more about what you’re doing?” And they provide Twitter and Gettr handles, websites, on occasion even a cellphone number.

Why do you do that? I once asked him.

“It’s a force multiplier,” he answered.

Right right right.

This is the Democratic Party’s nightmare scenario, the hobgoblin that visits at 4 a.m.: The infrastructure of civil servants on the state level, which barely held the United States together in the aftermath of the 2020 election, comes entirely undone through democratic means. As it is, the Republicans are poised in the 2022 midterms to take back the House in a potential rout, a prospect that fills Bannon with inexpressible glee, and for which he seems to take partial credit. He’s hoping for a 60-, 70-, 80-seat loss for the Democrats—something that will set the party back for generations.

“The left in the media … they’re all about democracy?” he ranted to me one day. Then he broke into a smile. “On November 8, the War Room and the War Room posse and all the little people at the school boards and things—we’re gonna give you democracy shoved up your ass. Okay? We’re gonna give you a democracy suppository.”

All bluster, you might say. Showmanship. Bannon is merely jumping on bandwagons that were already rolling. Murkowski hardly seemed moved by his efforts.

[Anne Applebaum: The MyPillow guy really could destroy democracy]

“Bannon? Please,” says John Podhoretz, the old-school conservative editor of Commentary. “He was a third-rate banker who got a tiny slice of an enormous pie.” He’s referring to the piece of Seinfeld profits that Bannon got when he helped orchestrate a deal between Ted Turner and Castle Rock Entertainment. “He ended up taking over Breitbart because Andrew Breitbart suddenly died. If Paul Manafort weren’t a criminal, he and Kellyanne Conway wouldn’t have taken over the Trump campaign. He’s not an emperor and he has no clothes.”

Bannon, according to this theory, is a fundamentally unsuccessful guy who has failed ever upward—one of those strange id creatures who’s come to sudden prominence in this id-favorable internet age, but is too undisciplined to hang on to any power for very long. He lasted in the White House for, what, seven months?

The problem is, there’s now loads of room for those id creatures in American politics and culture, and they can accumulate considerable influence. Last September, ProPublica contacted GOP leaders in 65 key counties around the country and discovered that 41 of them “reported an unusual increase in sign-ups since Bannon’s campaign began,” with at least 8,500 new precinct officers joining their ranks. And Bannon is now on Axios’s list of the Republicans’ new kingmakers, compiled this year based on interviews with top GOP consultants and operatives around the country, in part because his show is “a goldmine” for primary candidates who are fundraising online.

Reports of Bannon’s influence would be far less alarming if his show were a reliable source of news and information. But an analysis by the Brookings Institution found that War Room had more episodes containing falsehoods about election fraud than any other popular political podcast in the months leading up to January 6. And January 6 is the stench that hangs over this discussion, is it not? Not that he necessarily coordinated the logistics of that day in any significant way (he’s such a dervish of chaos that I wouldn’t trust him to organize so much as a birthday party). But the energy behind January 6? Especially given the size and commitment of his citizen army, and how relentless he is in firing up his troops? That he does seem to have helped marshal.

There’s a scene I keep looping back to in Errol Morris’s 2018 documentary about Bannon, American Dharma. Bannon is recalling his Hong Kong days in the 2000s, when he was working for Internet Gaming Entertainment. He notes how stunned he was to discover how many people played multiplayer online games, and how intensely they played them. But then he breaks it down for Morris, using the example of a theoretical man named Dave in Accounts Payable who one day drops dead.

“Some preacher from a church or some guy from a funeral home who’s never met him does a 10-minute eulogy, says a few prayers,” Bannon says. “And that’s Dave.”

But that’s offline Dave. Online Dave is a whole other story. “Dave in the game is Ajax,” Bannon continues. “And Ajax is, like, the man.” Ajax gets a caisson when he dies and is carried off to a raging funeral pyre. The rival group comes out and attacks. “There’s literally thousands of people there,” Bannon says. “People are home playing the game, and guys are not going to work. And women are not going to work. Because it’s Ajax.”

“Now, who’s more real?” Bannon asks. Dave in Accounting? Or Ajax?

Steve Bannon in Washington, D.C., in May (Chris Buck for The Atlantic)

Ajax, Bannon realized. Some people—particularly disaffected men—actively prefer and better identify with the online versions of themselves. He kept this top of mind when he took over Breitbart News in 2012 and decided to build out the comments section. “This became more of a community than the city they live in, the town they live in, the old bowling league,” he tells Morris. “The key to these sites was the comment section. This could be weaponized at some point in time. The angry voices, properly directed, have latent political power.”

I mentioned this moment to Bannon the second time we spoke. On War Room, he frequently talks about three levels of participation: the posse, the cadre, and the vanguard. It sounded to me like the gamification of politics. Yes, he told me. That’s just it: “I want Dave in Accounting to be Ajax in his life.”

But that’s precisely what happened on January 6. The angry, howling hordes arrived as real-life avatars, cosplaying the role of rebels in face paint and fur. They stormed the Capitol while an enemy army tried to beat them away. They carried their own versions of caissons. They skipped a day of work. And then they expressed outrage—and utter incredulity—when they got carted away.

The fantasy and the reality had become one and the same.

A few hours into my first interview with Bannon, he tells me the story of how he became a father of two more kids than he’d planned. It was the mid-’90s, and he was already a once-divorced dad of a little girl, when he began to casually date a “knockout” he met at a photo shoot. At the time, he had his own boutique investment bank, Bannon & Co., in Beverly Hills, but in April 1994, he went off to Arizona to manage the quixotic eco-experiment Biosphere 2—one of the odder aspects of Bannon’s already unlikely biography (but typical in that it resulted in a lawsuit)—and decided one weekend to have her come visit. She flew in, she flew out, and he assumed that that was that. But a month or two later, he says, she contacted him, asking if they could get together when he was next in L.A.

“So we go to a restaurant and we’re having a great conversation,” he tells me. “I’m just kind of in listen mode, because she had a tendency to go into talk mode.” Bannon himself is in storytelling mode—relaxed, sunny, nothing at all like the tightly wound belligerent howling into the mic. “Finally, because I had to go to another meeting, I said, ‘You know, I gotta bounce.’ And she goes, ‘Um, can we order a couple of espressos or some coffee?’ ” He sensed exactly where the discussion was headed. “And my heart’s like”—he starts pounding his chest—“boom boom boom.”

She was pregnant. With twins. “I knocked her up at the Biosphere,” he says, shaking his head. “We were watching … who was that old crazy guy with the TV show?”

John McLaughlin?

“John McLaughlin. It was whatever show he hosted.”

That would be The McLaughlin Group. Was there ever any question of not marrying her?

“No. I had to. Knowing my mom, there was just no chance. The girls could not be illegitimate. I retained a lawyer and we had a prenup.”

Somehow, this story came up a few weeks later, when I was chatting on the phone with one of Bannon’s former colleagues. I heard an audible scoff. “He’s using you. He knows that story makes him look good. Like he’s responsible.”

He’s using you. It’s a refrain I will hear over and over again on this strange odyssey. Bannon’s the guy with a perpetual meta-motive, always working an angle. He’s extremely skilled at getting others to do what he wants them to do. He speaks openly, almost exuberantly, about his talent for thought-puppetry. When I asked him why Democrats are terrible at talk radio, he had an immediate reply: Democrats are masters of the cool mediums, like TV. “But radio is theater of the mind,” he said. “Hot and theater of the mind. I can fuck with your mind so badly if you’re just hearing my voice, right? It’s a much more powerful medium.”

No one disputes that Bannon is very smart. He sweeps in information quickly, has a file-cabinet memory, can keep multiple tabs open in his brain. It’s how he uses his brain that horrifies people—and I’m talking not just about Democrats, but about many of his former colleagues, who see in him a disordered, nefarious kind of brilliance. Stephanie Grisham, who worked both on the Trump campaign and in the Trump White House in various press jobs (including nearly a year as communications director), called him a con man when we chatted on the phone.

“Your subject is a very sick megalomaniac,” wrote Anthony Scaramucci, who for a brief 11 days was also Trump’s communications director, when I emailed and asked him about Bannon. “Study Ullrich, a great biographer (Hitler). We have seen his sinister form before. We are ready.”

“Steve may well be mentally unstable, in a frightening, disturbing kind of way. He was certainly a cancer in the Administration,” wrote yet another former White House colleague, and not a low-ranking one, in an email when I sent a query about Bannon.

Care to elaborate? I wrote back. The reply:

He immersed himself in an office covered, literally wall-to-wall, with whiteboards filled with his various musings and plans and accomplishments—which I found just bizarre. In conversations with him, I got the very distinct impression that he was a very ends-justify-the-means kind of person. And way too many conversations ended with “then we burn it all down … just burn it down.” It was never clear as to what “it” was. Congress? The “establishment?” DC? The country as he perceived it? The “world order?”

A con man, a cancer, Hitler. Did people speak about even Richard Nixon in this way?

Yet here’s the dirty secret about Bannon: Many liberals who have met him are disarmed by how charming he is. (He’s using you.) When Bannon isn’t in full gladiatorial mode, he is upbeat, good company, almost clubbable. “He’s a lot like his mother,” his old friend and Navy pal Sonny Masso told me. “Never met a stranger.” He called me “ma’am” and “kid.”

White House reporters were fond of him. In a leaky White House, Bannon was a gusher. (And often with the dirtiest dish.) He’s quite capable of code-switching into the patois and patter of the coastal elite, probably because he’s a card-carrying member, whether he likes it or not: an alumnus of Harvard Business School, Georgetown School of Foreign Service, Goldman Sachs, Hollywood. But his actual beliefs are hard to discern. Michael Wolff’s entertaining anthology, Too Famous, includes an astute essay about Bannon, noting that he “could seem like a person both professing quite an extraordinary level of bullshit, and yet, as dramatically, not believing any of it at all.” He is Schrödinger’s bullshitter, at once of his nonsense and above it.

This ambiguity—this doubleness—extends to the Big Lie, the notion that the 2020 election was stolen from Donald Trump. The number of people who know Bannon and say he doesn’t believe it is surprising. But think about it, many of them say: Did he really have a choice? Just months before the election, Bannon was arrested for allegedly defrauding investors in “We Build the Wall,” a crowdsourced project to erect a barrier on the southern border. Faced with a potential future in orange pajamas, Bannon insinuated himself back in Trumpworld, helping the president sell his message that the election was stolen—and that he had to fight back by any means possible. “Steve was in on the joke,” says Sam Nunberg, one of the first hires of the 2016 Trump campaign, now a political consultant. “He never believed that the election would be overturned. Steve needed a pardon.”

“That’s absurd,” Bannon says. I tell him many people he knows are convinced that he sells this dangerous message for sport. He waves it off. “ ’Cause they don’t believe it,” he says. “Doesn’t mean I don’t believe it. I absolutely believe it, to the core of my being.”

“I have a very big soft spot for Steve,” a former colleague and senior political operative tells me. “I really think he believes he’s fighting for the greater good. But I definitely get frustrated with him sometimes, and I definitely disagree with him sometimes”—particularly about his unflagging, crackbrained message to his audience that the election was stolen. “I think it’s very dangerous for democracy. And I’ve said this to Steve.”

What does he say back?

“He just starts talking about Confucius and Alexander and all this fucking shit.”

“His old life, as he knows it, is gone,” says Grisham, who recently wrote a memoir about her chaotic time in the White House, I’ll Take Your Questions Now. “He has gone in sooooo deep on the Big Lie of this election being stolen—he’s not gonna go back to, I don’t know, doing whatever it was he did before.” She points out that very few former aides can achieve the escape velocity required to make it out of Trump’s world. They’re stuck in low orbit.

“The tragedy of Steve Bannon,” Nunberg tells me, “is that when he leaves the White House, he’s known as the great manipulator, the intellectual heavy of the international populist uprising. But still he ends up in the fetal position at Donald Trump’s feet.”

Is that on the record? I ask.

“Fuck yeah.”

The bottom floor of the so-called Breitbart embassy, former home of Breitbart News and now home of War Room, is part man cave, part grad-student flophouse, and part devil’s lair. Books cover every surface. Two framed pictures of Bannon sit on the floor, unhung. An anti–Hillary Clinton poster glares from a wall in the living room; anti–Joe Biden mugs lurk in the kitchen cupboard. His fridge is a cry for help, a Stonehenge of takeout cartons and bagged carrots. The toilet seat in his bathroom is always up. His living room is dominated by a giant leather couch and a flatscreen TV that runs MSNBC all day long. Bannon loves hating on MSNBC. But he also thinks its shows, Rachel Maddow’s in particular, set the gold standard for production values and narrative verve.

The first afternoon I visit, Bannon is doing segment Tetris, shuffling his A, B, C, and D blocks for the afternoon show. Though he has a handful of employees cycling through his home, he does an awful lot by himself, often on the fly, including many preinterviews.

“Senator, thank you for doing this … Did you file this today?” It’s minutes before showtime, and he’s talking with Jake Corman, the president pro tempore of the Pennsylvania Senate, who’s just filed a letter urging impeachment proceedings against the Democratic district attorney of Philadelphia, based on a spike in crime. This kind of shit-stirring, norm-shattering, institution-weakening exercise is right up Bannon’s alley. Crime is up, so … what the hell, let’s impeach someone.

Bannon hangs up and describes the “order of battle” to his producer Cameron, a young fellow with an unflappable demeanor and a Phish sticker on his laptop. “I’ll go right to Corman, I’ll do a Pillows read”—MyPillow, one of his sponsors—“I’ll go to Tina.” That’s Tina Peters, a Mesa County, Colorado, clerk, whom he describes as his show’s Joan of Arc. “Let me have Tina?”

Chris Buck for The Atlantic

Peters will eventually be indicted by a grand jury for a long and impressive list of allegations concerning election-security breaches, including aiding an unauthorized individual in making copies of Dominion’s voting-machine hard drives. A judge will also rule that she cannot oversee the 2022 elections. (Peters has denied wrongdoing, and insists the investigation of her was politically motivated.)

At a disinformation conference at Stanford in April, Barack Obama told an audience: “People like Putin—and Steve Bannon, for that matter—understand it’s not necessary for people to believe disinformation in order to weaken democratic institutions. You just have to flood a country’s public square with enough raw sewage.” This was an echo of what Bannon had told the journalist Michael Lewis in 2018, that his preferred media strategy was to “flood the zone with shit.”

[From the April 2020 issue: George Packer on how to destroy the American government]

Roughly 2,000 episodes in, Bannon’s show has produced a mighty river of ordure. Every state official, no matter how marginal or ostracized (or indicted), gets a chance to recite what they deem evidence of a stolen election—harvested ballots! hinky machines! lapses in signature matches!—and other assorted crimes committed by Democrats. His show is ground zero for epistemological warfare, and he recruits all kinds of fringe combatants to the cause, including the Mos Eisley Cantina caucus of Congress (Matt Gaetz, Mo Brooks, and, for a long while, with alarming regularity, Marjorie Taylor Greene). And if they say something truly off-the-wall, even by War Room standards, well … there’s always plausible deniability. Bannon wasn’t doing the talking. He only hands his guests the mic, right? How could he know they were lousy at karaoke?

I will say that the War Room is, in its own frantic way, more varied and ambitious than the other shows of its kind, lurching between republic-endangering lies and granular wonkery, especially when it comes to polls and economics. (There’s a lot of talk about wage-price spirals and quantitative easing.)

But the motto that sits on Bannon’s mantel—THERE ARE NO CONSPIRACIES, BUT THERE ARE NO COINCIDENCES—is quite apt. It’s perfect doublespeak, a formula that allows his viewers to embrace a conspiracy without calling it a conspiracy, to believe a lie while claiming it isn’t one. His show positively burbles with conspiracies, or at least darkly hints at doings within doings, grimy wheels within wheels. Before the Olympics in China, Bannon suggested that something was terribly suspicious about the lockdowns happening there—it couldn’t just be Omicron that was spooking the Chinese government.

So what’s your theory? I asked.

“Some people think it’s a combination of Ebola and hemorrhagic fever,” he answered. “I don’t know.”

That would mean China successfully concealed an Ebola outbreak.

Early in the Ukraine conflict, Bannon took Vladimir Putin’s latest propaganda out for a spin, repeating more than any other far-right broadcast (again, according to Brookings) that Ukraine was developing bioweapons with funding from the United States. Even his own expert, the virologist Steven Hatfill, slapped him down on the air for repeating that one: “Russia’s the one with a biological-weapons program in this area.”

And don’t get Bannon started on the COVID vaccines. They’re an experimental gene therapy! Shots that kill 15 people for every person they might save! (Well, he didn’t say that. A guest did—Steve Kirsch, the head of something called the Vaccine Safety Research Foundation.) Naomi Wolf, who suggested on Twitter (before getting kicked off) that COVID vaccines were a “software platform that can receive uploads,” is one of his most popular regulars. He insists on calling her Doctor Naomi Wolf every time she comes on the show, pausing and then leaning hard on the word Doctor. I point out that this is rather deceptive.

“She’s a Ph.D. from Yale, isn’t she?”

Oxford, I say. In philosophy.

“I rest my case. It’s good enough for me.”

“You allowed it to happen, you stupid motherfucker!”

This is what Bannon sounds like when he loses it. I had heard about his famous temper, but had yet to witness it in real time.

“You know why? ’Cause you don’t give a shit.”

The target of his pique is one of his employees. I will later feel terrible about this and apologize. He is yelling at the employee based on a mistake I made—I’d been pestering Bannon about a bizarre newsletter that I thought was issued by War Room but in fact came from a fan site. Bannon thought the employee was to blame.

“If I didn’t give a shit, I wouldn’t be here doing this stuff,” the employee replies.

“Bullshit,” Bannon says. “You’re doing this for a fucking paycheck. Go fuck yourself.” He then calmly turns to Cameron, the producer. “Do we have Ben at the border?” Suddenly the tantrum has the quality of WWE wrestling—dialed up for my benefit, a performance.

Was it for my benefit? I ask the employee.

He shakes his head. No. He stares at his computer, grim-faced.

Bannon’s blood is still up about half an hour later, when I ask him why he thinks his Apple podcast rankings dipped shortly after the start of the Ukraine invasion. They did not dip, he says, and starts punching his phone, this time to yell at his publicist. “Why did you not send her the Chartable chart every day?”

I get it every day, I interrupt.

“Stop,” he snaps at me. “Am I asking you?”

No, I say.

He continues giving a heated lecture to his publicist. “Are we the No. 1 or 2 podcast every day in politics on Chartable?” Pause. “Have we had any dips since the war started?” Pause. “Thank you. All 30 days you send me, I want you to send her, and I want you to copy me on it.”

I get it later. The chart shows a clear dip—with the show sliding to third, fourth, fifth place in the politics category—around the beginning of the war.

Bannon gets off the phone, perfectly cheerful.

When you were married, I ask, did you yell at your wives like this?

“Was I yelling?”

Yes, I tell him. What would his ex-wives say about him?

“They’d say, ‘Another day at the Bannon ranch.’ ”

Did any of his ex-wives ever drag him to therapy?

“Stop.” He starts laughing.

Look, if you want to stay married—

“Marriage to me was therapy.”

But did any of them ever take him to a shrink?

“Never mentioned it. Are you nuts? I’m an Irishman.”

I know, I say. Famously unanalyzable. Still, your personality is not garden-variety—

“That’s so not true.”

But of course it is true. The charisma, the quick temper, the overt delight in manipulating people …

… And again, the majestically unreliable narration. A few weeks later, I consulted a report from the Santa Monica Police Department filed on New Year’s Day 1996, following a 911 call. It said that Bannon’s second wife—the mother of the twins—had had an argument with Bannon so intense that she followed him out to the car, where he’d already climbed into the driver’s seat, and spat on him; he reached through the open window and grabbed her by the wrist and neck, leaving red marks.

I remembered the story well, having read it in Politico when it first broke, in 2016. Bannon was charged with misdemeanor domestic assault, battery, and dissuading a witness. When the story came out, Bannon told Politico through a spokesperson that he’d never been interviewed by the police about the incident. He pleaded not guilty to the charges. The case was later dismissed.

But as I reread the grim police report, something else caught my eye. It was the part that said, They have been going to counseling.

He had been dragged to a therapist.

“That’s not therapy,” Bannon says, when I mention this to him a few weeks later. “That’s marriage counseling.”

I do wonder what that counselor had to say.

I’ve gotten used to this strange house. Bannon and I are mid-conversation when my colleague David Frum appears on the flatscreen in the living room. Is that David? I ask, interrupting our conversation. Bannon turns around. He’s thrilled. “Ask David Frum how it was to get crushed,” he tells me. “You heard the story of how I destroyed him in Toronto?”

He’s referring to the debate the two had in 2018. It drew lots of publicity at the time. I did, in fact, watch it, and David did not, in fact, get crushed. According to the audience meter, the debate was a draw, the attendees unbudging in their final views—which overwhelmingly corresponded with David’s, by a 44-point margin. (David had argued that the future belonged to liberals, in the broad sense of the term; Bannon had argued it belonged to populists.) David wrote about the experience for The Atlantic.

“It was full-spectrum dominance.”

Full-spectrum dominance. It’s a staple in Bannon’s pantry of war cries. We will show full-spectrum dominance in November. We will run the tables on those feckless Democrats; we will fieldstrip these clowns. Trump was the tip of the spear, an armor-piercing shell.

Navy speak, basically, with extra habanero.

A streak of machismo definitely runs through War Room. Bannon crows about the new “muscular, ascendant Republican Party.” He despises “emotionalism.” He’s bellicose when it comes to the culture wars, possessed of unerring instincts about what will inflame and polarize. Demagoguing critical race theory? Here for it. Just hours before the invasion of Ukraine, he declared: “Putin ain’t woke.” The undocumented immigrants streaming over the border? “An invasion,” the real invasion, the one Americans should care about, as opposed to what’s happening in Ukraine.

[David Frum: The real lesson of my debate with Steve Bannon]

Come next January, Bannon hopes the new Republican majority will impeach President Biden for this so-called invasion. The notion strikes me as insane. But he talks about it with metronomic regularity on his show.

“His ability to see the crack, create the wedge, and then deliver a message with emotional impact is second to none,” Brad Parscale, a senior campaign manager for Trump in both 2016 and 2020, told me. “I’ve seen him do it in real time.”

But Bannon also has a darker, more oracular message to impart: We are at a historic inflection point. It’s The Fourth Turning. That’s the title of one of Bannon’s favorite texts, published in 1997. The authors, Neil Howe and William Strauss, take a cyclical view of history, stipulating that we go through four cycles every 80 to 100 years: a High (characterized by order), followed by an Awakening (characterized by questioning, consciousness-raising), followed by an Unraveling (marked by pessimism, selfish pursuits), which culminates in a Crisis (marked by destruction, possibly war).

At some point I ask Bannon: If you use your show to sow doubts about every institution there is—

“That’s good!”

About our media—

“That’s good!”

Then what replaces them?

“People are gonna come in to rejuvenate these things. It’s the cycle! It’s a natural process that has to happen. That’s where Donald Trump comes up.”

He trusts Donald Trump to re-sow the soil and build everything back?

“Donald Trump is an armor-piercing shell.”

Which is to say: There is no plan. The plan is to leave a smoldering crater where our institutions once were. Others will eventually fill it.

It must be so intoxicating to be the one in the crane with the wrecking ball.

Early on in my acquaintance with Bannon, his father died. Our original plan had been for me to meet Marty Bannon—Steve had dinner with him most weekends in Richmond—and we’d even gone some way toward coordinating the logistics. But then I got a text saying he’d died. I went to Martin Bannon’s funeral instead.

You could say that this was one hell of a brazen PR move, having a reporter tag along to your dad’s funeral—and an insensitive guerrilla stunt to pull on your family, too.

And on some level, it was. (He’s using you.)

But the Bannons barely blinked when I told them what I was doing there. They seemed to be used to this type of thing from Steve, and basically shrugged it off. (“Anything Steve says, you have to cut in half and divide by two,” one of them said.) His first wife was there, and she seemed to be on pleasant terms with him. His brother Chris, who went out of his way to make sure I didn’t feel marooned or awkward, was especially helpful when I phoned some weeks later, telling me that Steve had always been a reader and a control freak and “the most competitive guy on the planet.”

Chris Buck for The Atlantic

Marty’s story plays a key role in Steve Bannon’s own political transformation. He was a father of five, a man who worked for the phone company his entire life, only to panic and sell off most of what remained of his savings when the market crashed in 2008. That was Steve’s true moment of conversion on the road to Damascus, or so he says—what made him embrace the cause of the forgotten deplorable. “The civic society in our country is predicated upon Marty Bannons,” he told me. “The world depends upon the Marty Bannons. And they’re always getting the shit end of the stick.”

Steve was the sole member of his family not to take Communion. (He has a beef with the current pope: “He’s a Marxist.”) But that was the only way he stood out. That was the biggest revelation over those two days at Marty’s funeral: Bannon basically recedes when he’s in the bosom of his family. No one treats him like a celebrity. There’s no gravitational shift when he enters the room. His eulogy was brief, affectionate, appropriate—focused on the living, how the accomplishments of the grandkids had made Marty so proud. In this setting, anyway, Bannon never once stole the show.

Zelensky … just another degenerate Jew. These Jews keep showing up when societies collapse.

The Wuhan Lab was a Zionist Lab (Yves Levi, Rothschild)

I will say that Bannon tried to warn me.

Nothing burger with Jew sauce

Jews hate anyone that goes against the world financial machine.

He knew I was Jewish. So when I asked him about War Room chat rooms, he told me that some of them got “a little spicy.”

Only a matter of time until the Jews destroying this country get noticed and expelled

At first, I didn’t understand what he meant. Spicy?

There was a long pause. “How much do you drill down on the, on the right?” he finally replied. “Not the conservatives. People who are considered far-right or populist or nationalist. How familiar are you with this ecosphere?”

I told him getting more so, but not very.

“Look, it’s freedom of expression,” he said, “and they’re pretty blunt about what they’re saying.”

Jews to the left, Jews to the right, stuck in the middle of Jews.

These comments—all from different handles, by the way—are on Rumble, which carries Bannon’s show live, and usually has tens of thousands of viewers in real time. (I didn’t even venture onto Telegram, where I knew the commentary would be fouler still.) I got used to it after a while. I also came to expect it: Anti-Semitic rhetoric was the most abundant form of ugliness I saw from commenters during his broadcast, even more abundant than anything floridly racist or anti-immigrant.

This hardly seems an accident. Anti-Semitism is the mother of all conspiracy theories. Jews: They’ve rigged everything.

“You cannot possibly—you cannot possibly, possibly watch the War Room and think it’s in any way anti-Semitic,” Bannon says to me when I ask him about this. Give me an example of a show segment that’s anti-Semitic, he tells me.

But it’s never as straightforward as that.

For starters, it’s the people he brings on his show. Like Marjorie Taylor Greene, one of his most ubiquitous guests, whom he cast aside only after she spoke at a February conference where the organizer, Nick Fuentes, cheerfully praised Hitler. Her beliefs were hardly a secret before that. In 2018, she shared on Facebook a video claiming that “Zionist supremacists” were trying to displace white Europeans with immigrants (in other words, the “Great Replacement” theory); she also posted a hypothesis that the California wildfires may have been caused by lasers controlled, in part, by a vice chairman at “Rothschild Inc, international investment banking firm.”

Jewish space lasers, I say to him.

“I haven’t really seen that,” he tells me.

But the War Room regular who truly gives me the creeps is Jack Posobiec.

“Are you saying Posobiec’s an anti-Semite?” he asks. “Show me any evidence at all that he’s an anti-Semite.”

I’m uncertain how to reply to this. Hatewatch, a blog of the Southern Poverty Law Center, published a detailed account of Posobiec’s anti-Semitic postings on social media. (Posobiec called Hatewatch’s findings “disinformation” and claimed to have filed an FBI report about it.) The crudest evidence was once on Twitter. According to the SPLC, he was part of the crusade to identify Jewish users with three sets of parentheses—the “echoes meme,” as it became known—so that they could be targeted and harassed by white supremacists online. He erased those tweets, but some are still archived.

“Surrounded by (((them))) at Peter Thiel press conference,” Posobiec tweeted in October 2016, accompanied by a selfie with people who I gather are Jews in the background.

“(((WOLF))),” he tweeted in July 2016 above another person’s tweet complaining about Wolf Blitzer’s behavior in a restaurant.

On a January 13 segment of Bannon’s show, Posobiec mentioned Ron Klain. Klain is the White House chief of staff. His name comes up a zillion times a day on the news. It’s Klain, rhymes with rain; everyone knows how it’s pronounced. Posobiec said his name correctly the first time in the segment. He pronounced it correctly the second time too. But then he quickly revised his pronunciation. “Ronald Klein,” he said.

In case there was any doubt about what sort of fellow was pulling the strings.

Or, hey, maybe he just misspoke.

“No, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no,” Bannon says when I press this point. “You can’t. You can’t throw this charge out there. It’s a horrible charge. I consider myself one of the leaders in crushing anti-Semitism in this country.”

He says I should talk to all the Jews with whom he’s worked and done business. And it’s true, there are a fair number; not one has told me he’s said anything that offended them or betrayed any revulsion. (Though in court filings made during their divorce proceedings, his second ex-wife claimed that Bannon said outright that he didn’t like Jews, and didn’t want his kids attending a school with so many of them, because “they raise their kids to be ‘whiny brats.’ ” His response is adamant. “That’s a bald-faced lie,” he says, noting that he sent his kids to the school in question.)

During our conversation, Bannon is almost clumsily eager to show that he likes Jews. One evening, he told me that two things shocked him when living in London: “the anti-Semitism and the drinking.” A few minutes later, he mentioned how much he missed his doctors in Los Angeles. “They’re all Persian Jewish. They all look like movie stars. I don’t know if you’ve ever seen these guys. They’re like the most perfect people you’ve ever seen.”

“You should talk to Boris,” he now tells me, meaning Boris Epshteyn, a former Trump aide who is a regular fixture on War Room. (I did. “Any notion that Steve Bannon is anything but a great friend to the Jewish people and the state of Israel is a woke liberal lie.”)

I point out that frequently, when Epshteyn is on-screen on Rumble, a little sump collects with anti-Semitic sludge. The commenters love to dump on him. Boris the vaccinated J-E-W. Boris is a Mossad double agent.

“On Boris?”

Yes.

He pauses. “There’s a little bit. Yup. There’s no doubt.”

Anti-Semitism isn’t only about revulsion. It’s a belief system. Bannon and his guests are always invoking George Soros. Soros-backed district attorneys. Soros and the mega-donors. It’s code, by now—well-known code for a sinister theory about who’s really in control. I note that every time he says “Soros,” the anti-Semitic commenters come out, as if on cue.

“They say Soros?”

As if he doesn’t know.

Yes, I say. And the Rothschilds, also invoked on his show.

“That’s the Breitbart comments section,” he says dismissively.

But that’s just it: He told Errol Morris that the Breitbart comments section could be “weaponized at some point in time.” Inflaming anti-Semitism is a great way to organize revolts.

“I’m gonna continue to say Soros.”

Bannon lectures me that his side is not the problem. Mine is. “The Democratic Party is an anti-Semitic party,” he says. “The progressive left is virulently anti-Israel.” But that’s changing the focus of this discussion; we’re talking about his rhetoric.

Peter Navarro, another former Trump White House staffer who is a regular on War Room, was much more honest about this problem. When I asked him about the rivers of anti-Semitic slime I saw, he laughed for a moment. Then: “Yeah. You know. It’s a big tent.”

A few days after my conversation with Navarro, Bannon was on another tear about Ukraine on War Room, fuming once again that the United States has always been fighting Europe’s wars and bailing it out. Then he brought up Emmanuel Macron. “He’s a great guy. You know, the former Rothschild’s banker—”

But then Bannon seemed to catch himself. “Hey, that’s not a code word,” he said. “That’s where he worked. He worked at Rothschild & Company.”

Which is true. But there was no compelling reason for Bannon to say so.

Can I prove, absolutely, that my conversation with Navarro—one of his staunchest allies, with whom he is in constant communication—is what made Bannon catch himself, mid-sentence? I cannot. But I can’t disprove it either, and Navarro just happened to be his next guest. There are no conspiracies, but there are no coincidences.

On January 6, 2021, Maureen Bannon, Steve’s oldest child, was at the president’s rally on the Ellipse, seated in the second row of the section for VVIPs. (Not a misprint: VVIP means “very very important person.”) Her plan was to spend most of the day taking photographs for the conservative influencer and War Room favorite Maggie McCarthy, better known as Fog City Midge, who was conducting interviews on the Mall. But around 1:50 p.m., Maureen says she got a call from Arizona State Representative Mark Finchem, another War Room regular (currently leading the charge to decertify his state’s election results, also running for Arizona’s secretary of state), telling her and her crew to turn around.

“He was like, ‘Do not come near the Capitol,’ ” she told me. From where Finchem was, he could already see it: chaos.

Maureen and her gang made their way back to the Breitbart embassy, where she started calling family while watching the events unfold on the giant TV adjacent to the War Room studio. Her father was between shows. (He stops broadcasting at noon and resumes at five.)

The final time I visit Bannon, I ask him what he was doing during the insurrection.

“Watching what was going on.”

Where?

“Downstairs,” he says. We are, for once, on the parlor floor of the Breitbart embassy, which is much more grand, much more Washington. “In the war room. Basically the whole time.”

The problem with this story is that Maureen had told me otherwise. “He was upstairs,” she said to me. “And I was downstairs, in the studio area. We weren’t around each other until close to showtime.” She’d only briefly gone upstairs, to assure her dad that she was okay.

And look: I didn’t expect Steve Bannon to be honest about this. He’s already been charged with two counts of criminal contempt of Congress for failing to respond to a subpoena from the January 6 committee. His first attempt to get the charge dismissed, based on the bizarre claim of executive privilege, didn’t work. His trial starts July 18.

When I asked Maureen what she thought her father was doing upstairs, she told me she wasn’t sure, but she believed he was on the phone with the president, urging him to tell the protesters to stand down. “I can’t say with absolute certainty, because I did not hear him on the phone. But knowing my dad, I believe that he did tell Trump … that he needed to put out a statement telling them to stop.”

“She’s very sweet,” Bannon tells me when I relay this to him.

So you’re going to tell me you didn’t call Trump?

He coyly rolls his eyes. “I don’t remember.”

What?

“Hey, if they come up with it, I’ll have to rethink it, but I don’t think I did.”

I did it if they find it.

He’s quick to note that he did phone Trump that morning and evening, which of course I know, because the papers have just reported it, along with the news that more than seven hours of White House phone logs—which happened to encompass the window of the insurrection—were missing. I ask Bannon what might account for the gap.

“During the working day, I don’t think Trump takes a lot of calls on the cellphone.”

Except we already know that the president tried to reach Senator Tommy Tuberville and accidentally got Senator Mike Lee, I say.

So he really never talked to Trump?

“Talking to Donald J. Trump was not a priority in those hours. What was a priority,” he says, was getting all dozen Republican senators who’d originally agreed to reject the election results to stay the course. He was “livid” that some of them backed off their objections after the Capitol was breached.

This was not a response I had anticipated.

You wanted to stay the course, I say, even while men in horns and fur were storming the Senate floor? Even though a woman got shot ?

“I assume that the Capitol Police, they’re gonna get good order and discipline, but yes,” he says. “As bad as that looks, you still have your duty to do …And we failed that day. And the failure is on McConnell, and Schumer and Pelosi, and McCarthy, and all of them that wet themselves that day.”

Forget about the physical insurrection. He was furious that the legislative insurrection hadn’t taken place.

This is what he was talking about with Trump, he says, on the evening phone call. He told Trump it was over. “We had our shot,” he says, summarizing his message to the president. “What we now have is: You can have a state legislature go back after the fact and de certify. And then you’re kind of in uncharted territory. But the process to take the presidency” before it got certified was over.

It is hard to know what to make of this, the thinking is so outlandish, and so utterly estranged from the realities on the ground. True, Bannon had been at the Willard Hotel on January 5, along with a ragtag group of misfit lawyers and advisers, helping cook up a political and messaging strategy to overturn the election.

[From the January/February 2022 issue: Barton Gellman on how Trump’s next coup has already begun]

But he was now fuming over the failure to act on an interpretation of the 1887 Electoral Count Act, one that would have allowed the vice president to refuse to accept states’ electoral votes. It’s a dangerous interpretation. To embrace it would give our democracy the means to die by its own hand. And introducing it as a viable concept in the run-up to January 6, 2021, is what led to literal deaths—and had the Secret Service frantically trying to protect Vice President Mike Pence from grave physical harm.

Yet Bannon bitterly claims that Pence himself was the problem. Which is presumably what the guys with the hangman’s noose also thought. “As a gutless coward—and he is a gutless coward—he dropped a thermonuclear weapon on a city that was obviously on edge,” he insists, speaking of Pence’s failure to reject states’ electors. “He’s responsible. One thousand percent.”

This is the world according to Bannon: Mike Pence is to blame for January 6.

So what most upset you about that day, I ask, was that your legislative machinations were not fully carried out, even though they were never going to succeed?

“We would’ve lost,” he says. “Definitely lost. But you would’ve had it in an official record, right? That could be debated later on.”

Moving the Overton window—the spectrum of political and cultural ideas that a society is willing to countenance—is very important to Bannon. But getting the American public to accept the idea that the vice president can reject the results of a free and fair election—that’s more than shifting the window. That’s installing a new one.

So whom did Bannon call that day?

There’s a five-second pause. “I have to think about that. But we worked the phones in the afternoon—where I was told, in no uncertain terms, This is over.”

So whom did you talk to? I repeat.

“I gotta remember,” he says.

I stare at him.

“I blocked that whole thing out … I was worked up.”

He does say one thing: He wasn’t in touch with Ginni Thomas. (I asked.)

That, at least, is something. If you can believe it. If you can believe anything.

The house next door to the Breitbart embassy is Bannon’s now. Purchased for $2.3 million, according to public records. He hopes it will one day be the headquarters of the nationalist populist movement. “We’re gonna have all the lectures here, all the talks, all the cocktail parties,” he says as he walks me through it. It’s a lovely wedding cake of a place, with ornate molding and twinkly chandeliers. I ask if he sees any irony in its grandeur.

“In revolutionary France, didn’t they have the nicest salons?”

True, but didn’t Robespierre eventually find his own head in the cradle of the guillotine?

“I didn’t say it worked that well for everyone individually.”

Bannon may have styled himself as the leader of the nationalist populist movement. But he’s completely at home in the system he despises. After leaving the White House, when he was trying to build a continent-wide clearinghouse for the populist movement in Europe, he was partial to staying in luxury hotels. When federal agents came to arrest Bannon in August 2020 for allegedly defrauding investors in “We Build the Wall,” they had to pull him off the yacht of his latest patron, Guo Wengui (also known as Miles Kwok), where he’d been living for weeks.

“This guy stumbled into the MAGA movement as a way to make money and to get fame and fortune,” says another ex-colleague. “He lives off other people’s money—Andrew Breitbart, Bob Mercer, a Chinese billionaire. How is he any different from a kept woman? He’s a 68-year-old kept woman.”

Bannon has answers to this litany, of course, which he’s heard some version of many times before. His stint at Goldman gave him a glimpse inside the beast, how it fed off the little guy. His assorted collaborations with the billionaire Mercer family also served the cause, whether those were creating Cambridge Analytica, the data firm that fed the Trump campaign, or the Government Accountability Institute, whose president wrote the book Clinton Cash. His current association with the media mogul Robert Sigg and Miles Kwok has served War Room.

We will set aside, for now, that Sigg has a criminal record that includes bank fraud and assault, according to The Washington Post, and that Kwok is wanted by the Chinese government for fraud, as well as bribery and money-laundering, charges he has denied. And that Kwok not long ago filed for bankruptcy, suggesting that his assets are between $50,001 and $100,000 while his liabilities are between $100 million and $500 million.

Bannon does have some monastic habits. He’s seldom seen around town. He never discusses his girlfriend—or is she an ex?—and her daughter, who live several states away. He says the last time he had a fancy meal in D.C. was 10 years ago, at Cafe Milano, where the food was merely “fleet average.”

But Bannon is still the king of the side hustle. He is now dabbling in cryptocurrency. (FJB coin. JB stands for “Joe Biden.”) He’s partnered with Birch Gold, a sponsor of his show, writing a pamphlet on the demise of the dollar. Most important, he’s partnered with Kwok in ways both conspicuous and obscure: He received $1 million from Guo Media in 2018 to serve as a consultant to the company, which is dedicated in equal measure to savaging the Chinese government and spreading disinformation in America; he was identified in 2020 as one of the directors of GTV, an alternative news and social-media platform also linked to Kwok.

Last fall, GTV and the other media companies connected to Kwok were fined $539 million for illegally selling shares. (The companies neither admitted nor denied any wrongdoing; GTV has since shut down.) This spring, two of Bannon’s co-defendants in “We Build the Wall” pleaded guilty to defrauding donors of hundreds of thousands. The fourth co-defendant pleaded not guilty, and as of Friday, June 3, his jury was deadlocked, with a lone juror still holding out for acquittal. Bannon says his arrest was politically motivated. “This was 1,000 percent to keep me off the Trump campaign in 2020.”

For all his big talk, it is unclear how much Bannon is worth or what, in fact, truly belongs to him. The Breitbart embassy is owned by Moustafa El-Gindy, a former member of the Egyptian Parliament. This beautiful new house is owned by an LLC based in Delaware, but there’s no way to tell if that LLC is his.

I ask Bannon when he last flew commercial.

He grins. “Oh, years ago.”

How many years?

He reconsiders. “Commercial overseas, I’ve flown a bunch. But commercial domestic? Hasn’t been since before I took over the Trump campaign.”

He continues his tour, explaining where and how the two houses will become one. There are at least some walls he’s in favor of removing.

“Can I say something?” Bannon asks me during our final hours together. “There’s not a more sophisticated show on all television than War Room.”

I don’t know about that. He’s certainly working very hard at it.

But where, exactly, is the line between mania and desperation?

When I first met Bannon, he was already podcasting three hours per weekday and two hours on Saturdays. In March, he added a fourth hour to his weekday load, War Room: Battleground, to focus on local elections. What was already a frenetic schedule got even zanier; a Red Bull habit, which he’d quit, was back.

Bannon and I were originally going to fly out to Arizona for this story. He recently purchased a home there too, and he says its broadcast studio is an exact replica of the one in D.C., so that viewers won’t notice the difference. His plan had been to spend the winter and spring out there.

But we never made it. It may have been because his father died, throwing his life into temporary disarray. But I kept wondering if the real reason was something else, possibly financial trouble—maybe that’s why he added a fourth hour of programming to his load. But no, he tells me. “The War Room is a cash machine because it costs nothing to produce.” In fact, he says, he needed that fourth hour to accommodate all of his sponsors.

What’s really tying him to Washington, he explains, is a furious desire to keep the momentum going on his show. He’s on a roll. There’s so much energy now in the MAGA movement. Inflation is soaring; Biden is tanking. “The largest voting bloc in this nation is non-college-educated whites,” he tells me. “I have 52/48 of men and I have 50/50 of women that believe he’s illegitimate, okay?”

Note the use of the pronoun I. He really does see this as his movement. The nearer we get to 2024, the more he seems to feel compelled to stick around.

And you can see it. How this will finally be Bannon’s moment, when the nationalist populist movement at last takes wing, and he’ll be at the center of it all, hosting his salons.

But will he?

I mean: Is this guy Lenin in Zurich, patiently biding his time? Or is he some Estonian anti-Communist émigré from a Le Carré novel, waiting to die in a lonely bedsit in London?

Matthew C. MacWilliams, a public-opinion strategist and the author of On Fascism, is guessing the latter. “Trump threw him out. The Europeans kicked him to the curb. His empire crashed and he ended up with a podcast,” he says. “He’s a parasite. A talker. Rasputin with a digital show. Rasputin was knifed.”

But others still think he has plenty of influence. “He’s a smart man. He’s a crafty man. He’s a showman. And ultimately, he’s a dangerous man,” says yet another former colleague. And a vindictive man: “He commands a little army of terrifying people who can make life really difficult if you cross him.” Which explains why so many people in this story asked for anonymity.

In this person’s estimation, it would not be giving Bannon too much credit to say that he’s built the ideological foundation for Trumpism in this country. “And frankly, I think that that foundation has formed the basis of the mainstreaming of conspiracy theories, a spike in political violence, and a deep and continuous damage to our democratic institutions.”

On April 25, my phone dinged at 8:39 p.m. A text from Bannon, this time containing a link to a story in Axios. It said that 133 House Republicans had sent a letter to Alejandro Mayorkas, Biden’s secretary of homeland security, that essentially laid the groundwork for Mayorkas’s impeachment. “Enthusiasm for impeaching top Biden officials has spread from the fringes of the House Republican conference to its mainstream,” read the lede.

And you doubted WarRoom!!! Bannon texted.

I don’t know if War Room was responsible. The Axios authors never mentioned it. But Bannon has, as I’ve said, been banging on about impeaching Biden for the southern “invasion” for months. To borrow his former colleague’s term, he has helped mainstream this treacherous idea. And now here is a version of it, embraced by more than half of the House Republicans.

This is going to be so fucking epic.

Two-thirds of House Republicans voted to reject the result of the 2020 election. How long before it’s three-quarters, four-fifths, nine-tenths? How long before one of these people becomes speaker?

Why, I ruefully asked, was he so relentless with his pronunciamentos?

Because like a Kafka novel one can never escape.

Watch me, I wrote. I’m going downstairs and doing a load of laundry.

And I did. But my phone still lights up most nights. Bannon is still texting.

This article appears in the July/August 2022 print edition with the headline “American Rasputin.”

It has been updated to reflect the fact that, after the article went to press, the jury for the “We Build the Wall” co-defendant who pleaded not guilty went into deliberations without Bannon being called to testify.

Margaret Atwood on Envy and Friendship in Old Age

2022-02-18T06:00:00-05:00

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

So this is something you don’t experience every day as a writer: You post a thread about your new story on Twitter, a medium with which you have a love-hate relationship at best (essential to publicity, but also a forum for cruelty, an open pasture for a firing squad), and suddenly, the author of The Handmaid’s Tale appears in your timeline. She has read your story. She has some thoughts.

Wait till you get Really old. It will all change again. :)

This is what Margaret Atwood wrote to me on February 9, about 14 hours after I’d tweeted an essay I’d just completed about the heartache and complexity of friendships in midlife. Weirdly, no one else had made this observation. Atwood is 82.

How? I asked.

How?

Her reply: Your old enemies may become pals because there’s only the two of youse left who can remember the Dark Ages

before there were computers. :D Or pantyhose. :D :D

Or plastic bags. :D :D :D

She added that she liked the part of my story about envy. I know no writers who’ve had some success who have not encountered it.

I wrote her an email: Would she chat with me for a bit about this? About envy in friendship, about friendship in old age?

She would. Margaret Atwood in real time is very much who you would expect the author of her 17 novels, 18 books of poetry, and 11 works of nonfiction to be: game, associative, energetic. (Her latest collection of essays, Burning Questions, publishes on March 1. I drank in the book this past weekend, in two warm slugs.) Also, she speaks in perfect aphorisms, just as she so often does on Twitter. Mythology is everything that happened before you were born, she wrote in our February 9 exchange. When your parents were gods and heroes. Legend is your life until approx age 7. History begins after that. :D

Here is a condensed and lightly edited transcript of our discussion.

Read: It's your friends who break your heart

Jennifer Senior: Let’s start with: You wrote to me that when you’re much older, some of your enemies become friends. At the risk of being too personal, is there somebody in your life who migrated from one category to the other?

Margaret Atwood: I don’t think they migrate from being your enemy to being your dearest friend. They migrate from being a person you possibly wouldn’t speak to to someone with whom you might share rueful anecdotes. If you read Phyllis Chesler’s book about early-’70s feminism, you’ll realize that people were fighting all the time. But she says, nonetheless, we remember these battles because we shared them. And I suppose you could move to something like [Wilfred] Owen’s poem about World War I, in which two dead people are encountering each other, one from either side. I think the line is, “I am the enemy you killed, my friend.”

Senior: If it’s not too delicate, I was wondering whether the shape of your friendships also changed once your partner, Graeme Gibson, died. They must change …

Atwood: Well, of course they change. But things had not been quite the same for a while.

Senior: Because of his dementia.

Atwood: That’s right. But it wasn’t a sudden surprise. My friends were great. I would arrange for him to go out to lunch with people. I think the best exchange that happened was with a woman we’d known for a very long time. She arrived to take him for lunch. And he said, “I don’t know who you are, but I know that I know you, and I know that I like you.” And she said, “Well, that’s all we need.” And off they went to lunch.

Senior: My God, I love that. Do I know this person? Would our readers?

Atwood: She’s actually a very interesting person. Her name is Sylvia Fraser. She wrote probably the first book to talk openly about incestual sexual abuse, called My Father’s House.

Senior: One of the most popular replies on Twitter to my piece—in addition to yours!—was a woman who said that after she was diagnosed with metastatic cancer, her closest friend just … vanished. And how very hurtful that was. To which many cancer survivors or people living with cancer said, more or less, “This is much more common than you think.”

Atwood: I think it’s more common in a younger generation. People are afraid of it.

Senior: Ah. That makes sense. I don’t know how old this person was.

Atwood: I’m going to tell you a slightly long but interesting story: This young German artist turns up one day, and he has a project that he wants me to do. He’s going around the world, talking to writers and taking them into cemeteries of their choice and photographing them. And then he wants to interview them for a radio show about death.

Senior: Wow.

Atwood: So we get the photograph done; we have the interview. And then he tells me that the people who agree to do this are quite young people and people over the age of 55. But in between, they didn’t want to do it. And why is that? Because in the middle of your life, that’s when you’re likely to have young children and also be in the middle of your career. You don’t want to think about death.

Senior: Right.

Atwood: So that middle generation—somebody’s got cancer and it’s We don’t want to deal with this. But later on, somebody’s got cancer: This has happened to you before. You know. You’ve seen your parents die. You’ve seen people in your generation die. You’re not afraid of it in the same way. And you order the flowers and send the notes.

[Read: How friendships change in adulthood]

Senior: Let’s talk about envy. I want to know which books you think are best on the subject of envy.

Atwood: You can’t beat Shakespeare. I’ll give you the opening speech of Richard III: “All of those other people are having a great time, but not me. So watch me be bad. I’m gonna really mess them up.”

Senior: Why do you think writers are better about envy than psychologists?

Atwood: I think psychologists don’t want to admit it; they want to explain it. “You were too attached to your squeaky toy when you were 3.” Or “You didn’t get invited to Janie’s birthday party.”

Senior: Maybe that’s it. How dull.

Atwood: Fairy tales are full of envy. I give you Sleeping Beauty: “You forgot to invite me! Well, that was a mistake.” Think of how many there are in which the unfavored sister envies the favored one.

Senior: Do you think writers envy excessively?

Atwood: Probably no more than other people. But they write about it more, because they’re writers. Though we can talk about the groves of academe. And we can talk about small-press publishing. I think that in structured, hierarchical, expanding corporations, where there’s room to move up—and moving up is fairly rapid—envy is less likely to happen. My theory is that the smaller the piece of cheese, the more the mice fight over it.

(Pause.)

Notice I’m carefully not saying rats. And also, if you put too many animals in an enclosed space and with no exit, you’re gonna have fights, because there’s no way of getting out. So I think in closed systems, without much room for expansion, where the pieces of cheese are quite small, you’re gonna get ferocious resentments over who got the tiny piece of cheese.

Senior: I think that that generally describes a writer’s world. But there’s also this blockbuster phenomenon where suddenly a writer gets a huge wheel of cheese.

Atwood: Yes. And in the peer group of that writer, there is unbelievable resentment.

Senior: Did that happen to you?

Atwood: My ascent was much slower. But it did happen to me in 1972, after, you know, 12 years of little magazines and small publications—in a small way. You wouldn’t notice it if you weren’t in Canada. But I published two books that year and they were both successful by the terms that existed. And [the writer] Farley Mowat, who was well known at the time, said to me, “Now you’re a target and people will shoot at you.”

Senior: Did it happen?

Atwood: Absolutely.

[Read: How to write: A year in advice from Franzen, King, Hosseini, and more]

Senior: Did you find yourself also trying to manage your own joy in front of your friends who were still struggling?

Atwood: That’s a given. Anybody who isn’t a complete jelly bean does that.

Senior: In Burning Questions, your latest collection, you wrote two beautiful appreciations of Alice Munro, including one about a statue that was erected in her honor in her hometown. You’re so successful that I don’t imagine you envy her, though I guess you could, if you were some other kind of person. But I didn’t detect a molecule—

Atwood: No, no, no. I’ve known her for a very long time.

Senior: Are there people you have envied, in your life?

Atwood: I’m not very good at that emotion.

Senior: Oh, lucky you.

Atwood: As I’ve often said, I was improperly socialized. If you don’t live in a world in which frilly party dresses are a thing, you don’t envy frilly party dresses. You think, What’s that?

Senior: I also wonder if you achieved success early enough in your career—

Atwood: I certainly wasn’t festering, that’s for sure. If anything, I was, What just happened? We didn’t expect to be successful in popular terms. If you have low expectations, everything else is a surprise. Whereas if you have really high expectations and suddenly, as you graduate from creative-writing school, the six-figure advance does not materialize—that’s when you get resentful.

Senior: Is there something about being a writer apart from envy that might make it harder to have friendships?

Atwood: Writers are many and varied, from those writing a true romance under a pseudonym—one of the people I knew who did that was 6 foot 8 and a biker—all the way to Flaubert. So it’s just not one personality type. If you look at the beginning of my book Negotiating With the Dead: A Writer on Writing, I tried to look for motives, and they ranged from “to justify the ways of God to man” to “to get back at the people who were mean to me in high school.” And there’s no reason why it can’t be both.

[Read: Margaret Atwood bears witness]

Senior: Final question. What’s the best novel that you can think of about a friendship?

Atwood: Oh boy. There are a lot. I need advance warning for that kind of thing.

Senior: I’m sorry. I know. That was unfair.

Atwood: No, it’s not unfair. Well … let’s go back to the old ones. Probably Sense and Sensibility will do to start with. They’re sisters, but they certainly are quite loyal to each other in their own ways. That’s off the top of my head.

(She reflects for a moment.)

I like to choose dead people, because if you choose living ones, others will resent the fact that you didn’t choose theirs. Because of envy!

Senior: Perfect. I know you have to go, but I want you to know this will be the highlight of my week.

Atwood: I hope not, Jennifer. You know what Miss Manners said about weddings? “I suppose you have been told that your wedding day will be the happiest day of your life. Miss Manners sincerely hopes not.”

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It’s Your Friends Who Break Your Heart

2022-02-09T06:00:00-05:00

Illustrations by Oliver Munday

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

It is an insolent cliché, almost, to note that our culture lacks the proper script for ending friendships. We have no rituals to observe, no paperwork to do, no boilerplate dialogue to crib from.

Yet when Elisa Albert and Rebecca Wolff were in the final throes of their friendship, they managed, entirely by accident, to leave behind just such a script. The problem was that it read like an Edward Albee play—tart, unsparing, fluorescent with rage.

I met Elisa one evening in 2008, after an old friend’s book reading. She was such mesmerizing company that I rushed out to buy her debut novel, The Book of Dahlia, which had been published a few months earlier. I was instantly struck by how unafraid of darkness and emotional chaos she was. The same articulate fury suffused After Birth, her follow-up; her next book, Human Blues (her “monster,” as she likes to say), comes out in July.

Rebecca is someone I knew only by reputation until recently. She’s the founding editor of the literary magazine Fence, a haven for genre-resistant writing and writers that’s now almost 25 years old. She’s also the author of a novel and four poetry collections, including Manderley, selected by the National Poetry Series; she has a fifth coming out in the fall.

The two women became close more than a decade ago, spotting in each other the same traits that dazzled outsiders: talent, charisma, saber-tooth smarts. To Rebecca, Elisa was “impossibly vibrant” in a way that only a 30-year-old can be to someone who is 41. To Elisa, Rebecca was a glamorous and reassuring role model, a woman who through some miracle of alchemy had successfully combined motherhood, marriage, and a creative life.

It would be hard to overstate how much that mattered to Elisa. She was a new mother, all alone in a new city, Albany, where her husband was a tenured professor. (Albany! How does one find friends in Albany?) Yet here was Rebecca—the center of a lush social network, a pollinating bee—showing up on campus at Fence’s office every day.

[Read: Why making friends in midlife is so hard]

The two entered an intense loop of contact. They took a class in New York City together. They sometimes joked about running away together. And, eventually, they decided to write a book together, a collection of their email and text correspondence about a topic with undeniably broad appeal: how to live in the world and be okay. They called this project The Wellness Letters.

I read the manuscript in one gulp. Their exchanges have real swing to them, a screwball quality with a punk twist. On page 1:

R: Anything you haven’t done?

E: Affair. Acid. Shrooms. Second child. Death. Ayahuasca.

R: “Bucket List.”

E: “Efforts at Wellness.”

R: I just started writing something called Trying to Stay Off My Meds …

E: U R A STRONG WOMAN.

But over time, resentments flicker into view. Deep fissures in their belief systems begin to show. They start writing past each other, not hearing each other at all. By the end, the two women have taken every difficult truth they’ve ever learned about the other and fashioned it into a club. The final paragraphs are a mess of blood and bone and gray guts.

In real time, Elisa and Rebecca enact on the page something that almost all of us have gone through: the painful dissolution of a friendship.

The specifics of their disagreements may be unique to them, but the broad outlines have the ring and shape of the familiar; The Wellness Letters are almost impossible to read without seeing the corpse of one of your own doomed friendships floating by.

Elisa complains about failures in reciprocity.

Rebecca implies that Elisa is being insensitive, too quick to judge others.

Elisa implies that Rebecca is being too self-involved, too needy.

Rebecca implies: Now you’re too quick to judge me.

Elisa ultimately suggests that Rebecca’s unhappiness is at least partly of her own unlovely making.

To which Rebecca more or less replies: Who on earth would choose to be this unhappy?

To which Elisa basically says: Well, should that be an excuse for being a myopic and inconsiderate friend?

E: The truth is that I am wary of you …

R: When you say that you are wary of me, it reminds me of something … oh yes, it’s when I told you that I was wary of you … wary of your clear pattern of forming mutually idolatrous relationships with women who you cast in a particular role in your life only to later castigate.

Their feelings were too hot to contain. What started as a deliberate, thoughtful meditation about wellness ended as an inadvertent chronicle of a friendship gone terribly awry.

The Wellness Letters, 18 months of electrifying correspondence, now sit mute on their laptops.

I first read The Wellness Letters in December 2019, with a different project in mind for them. The pandemic forced me to set it aside. But two years later, my mind kept returning to those letters, for reasons that at this point have also become a cliché: I was undergoing a Great Pandemic Friendship Reckoning, along with pretty much everyone else. All of those hours in isolation had amounted to one long spin of the centrifuge, separating the thickest friendships from the thinnest; the ambient threat of death and loss made me realize that if I wanted to renew or intensify my bonds with the people I loved most, the time was now, right now.

Want to explore more of the ideas and science behind well-being? Join Atlantic writers and other experts May 1–3 at The Atlantic’s In Pursuit of Happiness event. Learn more about in-person and virtual registration here.

But truth be told, I’d already been mulling this subject for quite some time. When you’re in middle age, which I am (mid-middle age, to be precise—I’m now 52), you start to realize how very much you need your friends. They’re the flora and fauna in a life that hasn’t had much diversity, because you’ve been so busy—so relentlessly, stupidly busy—with middle-age things: kids, house, spouse, or some modern-day version of Zorba’s full catastrophe. Then one day you look up and discover that the ambition monkey has fallen off your back; the children into whom you’ve pumped thousands of kilowatt-hours are no longer partial to your company; your partner may or may not still be by your side. And what, then, remains?

With any luck, your friends. According to Laura Carstensen, the director of the Stanford Center on Longevity, I’ve aged out of the friendship-collecting business, which tends to peak in the tumbleweed stage of life, when you’re still young enough to spend Saturday evenings with random strangers and Sunday mornings nursing hangovers at brunch. Instead, I should be in the friendship-enjoying business, luxuriating in the relationships that survived as I put down roots.

And I am luxuriating in them. But those friendships are awfully hard-won. With midlife comes a number of significant upheavals and changes, ones that prove too much for many friendships to withstand. By middle age, some of the dearest people in your life have gently faded away.

You lose friends to marriage, to parenthood, to politics—even when you share the same politics. (Political obsessions are a big, underdiscussed friendship-ender in my view, and they seem to only deepen with age.) You lose friends to success, to failure, to flukish strokes of good or ill luck. (Envy, dear God—it’s the mother of all unspeakables in a friendship, the lulu of all shames.) These life changes and upheavals don’t just consume your friends’ time and attention. They often reveal unseemly characterological truths about the people you love most, behaviors and traits you previously hadn’t imagined possible.

Those are brutal.

And I’ve still left out three of the most common and dramatic friendship disrupters: moving, divorce, and death. Though only the last is irremediable.

The unhappy truth of the matter is that it is normal for friendships to fade, even under the best of circumstances. The real aberration is keeping them. In 2009, the Dutch sociologist Gerald Mollenhorst published an attention-grabber of a study that basically showed we replace half of our social network over the course of seven years, a reality we both do and don’t intuit.

R: I’m worried once we wrap up our dialogue our friendship will be useless, therefore done.

E: Nope. We r deeply in dialogue for long run I think. Unless U want to not b. Does our friendship feel useless?? …

R: No I want to be friends forever

E: Then we will b

Were friendships always so fragile? I suspect not. But we now live in an era of radical individual freedoms. All of us may begin at the same starting line as young adults, but as soon as the gun goes off, we’re all running in different directions; there’s little synchrony to our lives. We have kids at different rates (or not at all); we pair off at different rates (or not at all); we move for love, for work, for opportunity and adventure and more affordable real estate and healthier lifestyles and better weather.

[From the November 2019 issue: Why you never see your friends anymore]

Yet it’s precisely because of the atomized, customized nature of our lives that we rely on our friends so very much. We are recruiting them into the roles of people who once simply coexisted with us—parents, aunts and uncles, cousins, fellow parishioners, fellow union members, fellow Rotarians.

It’s not wholly natural, this business of making our own tribes. And it hardly seems conducive to human thriving. The percentage of Americans who say they don’t have a single close friend has quadrupled since 1990, according to the Survey Center on American Life.

One could argue that modern life conspires against friendship, even as it requires the bonds of friendship all the more.

When I was younger, my friends had as much a hand in authoring my personality as any other force in my life. They advised me on what to read, how to dress, where to eat. But these days, many are showing me how to think, how to live.

It gets trickier as you age, living. More bad things happen. Your parents, if you’re lucky enough to still have them, have lives so different from your own that you’re looking horizontally, to your own cohort, for cues. And you’re dreading the days when an older generation will no longer be there for you—when you’ll have to rely on another ecosystem altogether for support.

Yet for the past decade or so, I’ve had a tacit, mutual understanding with many of the people I love most, particularly fellow working parents: Look, life’s crazy, the office has loaded me up like a pack animal, we’ll catch up when we catch up, love you in the meantime. This happens to suit a rotten tendency of mine, which is to work rather than play. I could give you all sorts of therapized reasons for why I do this, but honestly, at my age, it’s embarrassing. There comes a point when you have to wake up in the morning and decide that it doesn’t matter how you got to whatever sorry cul-de-sac you’re circling; you just have to find a way out.

I think of Nora Ephron, whose death caught virtually all of her friends by surprise. Had they known, they all said afterward—had they only known that she was ill—they’d have savored the dinners they were having, and they certainly wouldn’t have taken for granted that more of them would stretch forever into the future. Her sudden disappearance from the world revealed the fragility of our bonds, and how presumptuous we all are, how careless, how naive.

[Read: Nora Ephron’s rules for middle-age happiness]

But shouldn’t this fragility always be top of mind? Surely the pandemic has taught us that?

I mean, how long can we all keep postponing dinner?

When I began writing this story, my friend Nina warned me: Do not make this an occasion to rake through your own history and beat yourself up over the state of your own friendships. Which is something that only a dear friend, armed with protective instincts and a Spidey sense about her friend’s self-lacerating tendencies, would say.

Fair enough. But it’s hard to write a story about friendship in midlife without thinking about the friends you’ve lost. “When friendship exists in the background, it’s unremarkable but generally uncomplicated,” wrote B. D. McClay, an essayist and critic, in Lapham’s Quarterly last spring. “But when friendship becomes the plot, then the only story to tell is about how the friendship ended.”

Friendship is the plot of this article. So naturally I’m going to write at least a little about those I’ve lost—and my regrets, the choices I’ve made, the time I have and have not invested.

On the positive side of the ledger: I am a loyal friend. I am an empathetic friend. I seldom, if ever, judge. Tell me you murdered your mother and I’ll say, Gee, you must have been really mad at her. I am quick to remind my friends of their virtues, telling them that they are beautiful, they are brilliant, they are superstars. I spend money on them. I often express my love.

On the negative side: I’m oversensitive to slights and minor humiliations, which means I’m wrongly inclined to see them as intentional rather than pedestrian acts of thoughtlessness, and I get easily overwhelmed, engulfed. I can almost never mentally justify answering a spontaneous phone call from a friend, and I have to force myself to phone and email them when I’m hard at work on a project. I’m that prone to monomania, and that consumed by my own tension.

What both of these traits have in common is that I seem to live my life as if I’m under siege. I’m guessing my amygdala is the size of a cantaloupe.

Most of my withered friendships can be chalked up to this terrible tendency of mine not to reach out. I have pals in Washington, D.C., where I started my professional life, whom I haven’t seen in years, and friends from college I haven’t seen since practically graduation—people I once adored, shared my life with, couldn’t have imagined living for two seconds without.

And yet I do. I have.

This is, mind you, how most friendships die, according to the social psychologist Beverley Fehr: not in pyrotechnics, but a quiet, gray dissolve. It’s not that anything happens to either of you; it’s just that things stop happening between you. And so you drift.

It’s the friendships with more deliberate endings that torment. At best, those dead friendships merely hurt; at worst, they feel like personal failures, each one amounting to a little divorce. It doesn’t matter that most were undone by the hidden trip wires of midlife I talked about earlier: marriage, parenthood, life’s random slings and arrows. By midlife, you’ve invested enough in your relationships that every loss stings.

[Read: The Friendship Files]

You feel bereft, for one thing. As if someone has wandered off with a piece of your history.

And you fear for your reputation. Friends are the custodians of your secrets, the eyewitnesses to your weaknesses. Every confession you’ve made—all those naked moments—can be weaponized.

There was the friend I lost to parenthood, utterly, though I was also a parent. Her child shortly consumed her world, and she had many child-rearing opinions. These changes alone I could have handled; what I couldn’t handle was her obvious disapproval of my own parenting style (hands-off) and my lack of sentimentality about motherhood itself (if you don’t have something nice to say about raising kids, pull up a chair and sit next to me).

There was no operatic breakup. She moved away; I made zero effort to stay in touch. But whenever I think of her, my stomach chirps with a kind of longing. She showed me how cognitive behavioral therapy worked before I even knew it was a thing, rightsizing my perspective each time I turned a wispy cirrus into a thunderhead. And her conversation was tops, weird and unpredictable.

I miss her. Or who she was. Who we were.

I lost a male friend once to parenthood too, though that situation was different. In this instance, I was not yet a mother. But he was a dad, and on account of this, he testily informed me one day, he now had higher moral obligations in this world than to our friendship or to my feelings, which he’d just seriously hurt (over something that in hindsight I’ll confess was pretty trivial). While I knew on some level that what he said was true, I couldn’t quite believe he was saying it out loud, this person with whom I’d spent so many idle, gleeful hours. I miss him a lot, and wonder to this day whether I should have just let the comment go.

Yet whenever I think of him, a fiery asterisk still appears next to his name.

Mahzad Hojjat, a social-psychology professor at the University of Massachusetts at Dartmouth, once told me that people may say that friendship betrayals aren’t as bad as romantic betrayals if they’re presented with hypothetical scenarios on a questionnaire. But that’s not how they experience friendship betrayals in real life. This doesn’t surprise me. I still have sense-memories of how sickened I was when this friend told me I’d been relegated to a lower league—my heart quickening, the blood thumping in my ears.

Then there was the friend who didn’t say anything hurtful to me per se; the problem was how little she said about herself at all. According to Hojjat, failures of reciprocity are a huge theme in broken friendships. That stands to reason—asymmetries of time and effort can continue for only so long before you feel like you’ve lost your dignity. (I myself have been criticized for neglect and laziness, and rightly. It’s shitty.) But there’s a subtler kind of asymmetry that I think is far more devastating, and that is a certain lopsidedness in self-disclosure. This friend and I would have long lunches, dinners, coffees, and I’d be frank, always, about my disappointments and travails. I consider this a form of currency between women: You trade confidences, small glass fragments of yourself.

But not with her. Her life was always fine, swell, just couldn’t be better, thanks. Talking with her was like playing strip poker with someone in a down parka.

[Read: How friends become closer]

I mentioned this problem to Hojjat. She ventured that perhaps women expect more of their female friends than men do of their male companions, given how intimate our friendships tend to be. In my small, unscientific personal sample of friends, that’s certainly true.

Which brings me to the subject of our Problem Friends. Most of us have them, though we may wish we could tweeze them from our lives. (I’ve had one for decades, and though on some level I’ll always love her, I resolved to be done with her during this pandemic—I’d grown weary of her volatility, her storms of anger.) Unfortunately, what the research says about these friends is depressing: It turns out that time in their company can be worse than time spent with people we actively dislike. That, at any rate, is what the psychologist Julianne Holt-Lunstad discovered in 2003, when she had the inspired idea to monitor her subjects’ blood pressure while in the presence of friends who generated conflicted feelings. It went up—even more than it did when her subjects were in the presence of people with whom they had “aversive” relationships. Didn’t matter if the conversation was pleasant or not.

You have to wonder whether our bodies have always known this on some level—and whether the pandemic, which for a long while turned every social interaction into a possible health risk, made all of our problem friends easier to give the slip. It’s not just that they’re potentially bad for you. They are bad for you. And—alas—always were.

A brief word here about the scholarship devoted to friendship: I know I’ve been citing it quite a bit, but the truth is, there’s surprisingly little of it, and even less that’s particularly good. A great deal is dime-store wisdom crowned in the laurels of peer review, dispatches from the Empire of the Obvious. (When I first wrote to Elisa about this topic, she replied with an implicit eye roll. “Lemme guess: Long term intimate relationships are good for u!”)

You have perhaps heard, for instance, of Holt-Lunstad’s 2010 meta-analysis showing that a robust social network is as beneficial to an individual’s health as giving up cigarettes. So yes: Relationships really are good for u.

[Read: How friendships change in adulthood]

But friendship, generally speaking, is the redheaded stepchild of the social sciences. Romantic relationships, marriage, family—that’s where the real grant money is. They’re a wormy mess of ties that bind, whether by blood, sex, or law, which makes them hotter topics in every sense—more seductive, more fraught.

But this lacuna in the literature is also a little odd, given that most Americans have more friends than they do spouses. And one wonders if, in the near future, this gap in quality scholarship may start to fill.

In a book published in the summer of 2020, Big Friendship, Aminatou Sow and Ann Friedman, the hosts of the podcast Call Your Girlfriend, argued that some friendships are so important that we should consider assigning them the same priority we do our romantic partnerships. They certainly view their own friendship this way; when the two of them went through a rough patch, they went so far as to see a therapist together.

I mentioned this to Laura Carstensen. Her first reaction was one of utter bewilderment: “But … it’s the whole idea that friendships are voluntary that makes them positive.”

Practically everyone who studies friendship says this in some form or another: What makes friendship so fragile is also exactly what makes it so special. You have to continually opt in. That you choose it is what gives it its value.

But as American life reconfigures itself, we may find ourselves rethinking whether our spouses and children are the only ones who deserve our binding commitments. When Sow and Friedman went into counseling together in their 30s, Sow was unmarried, which hardly made her unusual. According to a 2020 survey by the Pew Research Center, nearly a quarter of American adults ages 30 to 49 are single—and single here doesn’t just mean unmarried; it means not dating anyone seriously. Neither woman had (or has) children, either, a fact that could of course change, but if it doesn’t, Sow and Friedman would scarcely be alone. Nearly 20 percent of American adults ages 55 to 64 have no children, and 44 percent of current nonparents ages 18 to 49 say they think it’s unlikely they ever will.

“I have been with family sociologists who think it’s crazy to think that friends could replace family when you realize you’re in real trouble,” Carstensen told me. “ Yeah, they say, they’ll bring you soup when you have the flu, but they’re unlikely to care for you when you have dementia. But we could reach a point where close friends do quit their jobs to care for you when you have dementia.”

Friendship is the rare kind of relationship that remains forever available to us as we age. It’s a bulwark against stasis, a potential source of creativity and renewal in lives that otherwise narrow with time.

“I’ve recently built a whole community of people half my age,” says Esther Perel, 63, the psychotherapist and host of the immensely popular podcast Where Should We Begin?, in which she conducts a one-off couples-therapy session with anonymous clients each episode. “It’s the most important shift in my life, friendship-wise. They’re at my dinner table. I have three friends having babies.” These intergenerational friendships, she told me, are one of the unexpected joys of middle age, giving her access to a new vocabulary, a new culture, a new set of mores—at just the moment when the culture seems to have passed her generation by.

When we spoke, Perel was also preparing for her very first couples-therapy session with two friends, suggesting that Sow and Friedman were onto something. “The pandemic has taught us the importance of mass mutual reliance,” Perel said. “Interdependence has to conquer the lonely, individualistic nature of Americans.” As a native of Belgium, Perel has always found this aspect of American life a little baffling, particularly when she was a new mother. “In my culture, you ask a friend to babysit,” she told me. “Here, first you try to hire someone; then you go and ‘impose.’ And I thought: This is warped. This has got to shift.”

Might it now? Finally?

Elisa and Rebecca nurtured each other as if they were family—and often in ways their own families did not. When they met, Elisa was a new mother, and her parents were 3,000 miles away. Rebecca became her proxy parent, coaching her through breastfeeding and keeping her company; she even smelled like Elisa’s mom. “I can’t describe the smell, but it’s YOU, and it’s HER; it’s no cosmetic,” Elisa later wrote in The Wellness Letters, adding,

and your birthdays are adjacent and you are very much like her in some deep, meaningful ways, it seems to me. There is no one I can talk to the way I can talk to her, and to you. Her intelligence is vast and curious and childlike and insatiable and transcendent, like yours.

When they met, Rebecca was still married. While Rebecca’s marriage was falling apart, it was Elisa who threw open her doors and gave Rebecca the run of her downstairs floor, providing a refuge where she could think, agonize, crash. “We were sort of in that thing where you’re like, ‘You’re my savior,’ ” Rebecca told me. “Like, you cling to each other, because you’ve found each other.”

So what, ultimately, undid these two spit sisters?

On one level, it appeared to be a significant difference in philosophy. Namely: how they each thought about depression.

Rebecca struggles with major depression. Elisa has had experiences with the black dog too, going through long spells of trying to bring it to heel. But she hates this word, depression, thinks it decanted of all meaning, and in her view, we have a choice about how to respond to it.

R: When I’m really depressed I feel, and therefore am, at a painful remove from “life” … Even as I was aware that I was doing it all the time, this thing called “being a human being” … it was not what I imagined living to feel like. And I have spent years essentially faking it, just reassuring myself that at least from the outside I look like I’m alive …

E: Jesus Christ, dude, first thought: you must chill. You must CHILL. This is not particularly empathetic, I’m sorry. I just want to get you down on the floor for a while. I want to get you breathing. I want to get you out of your head and into your hips, into your feet. I want to loosen you up. That is all.

To Elisa, women have been sold a false story about the origins of their misery. Everyone talks about brain chemistry. What about trauma? Screwy families? The birth-control pills she took from the time she was 15, the junk food she gorged on as a kid?

E: THE BODY, dude. All I care about is THE BODY. The mind is a fucking joke … Remind me to tell you about the time they prescribed me Zoloft in college after my brother died. Pills for grief! I am endlessly amused by this now.

But pills for grief—that is, in fact, exactly what Rebecca would argue she needed.

Around and around the two went. The way Elisa saw it, Rebecca was using her depression as an excuse for bad choices, bad behavior. What Rebecca read in Elisa’s emails was a reproach, a failure to grasp her pain. “If there’s no such thing as depression,” she wrote in The Wellness Letters, “what is this duck sitting on my head?”

It’s a painfully familiar dynamic in a friendship: One friend says, Get a grip already. And the other one says, I’m trying. Can’t you see I’m trying? Neither party relishes her role.

Eventually, Rebecca started taking medication. And once she did, she pulled away, vanishing for weeks. Elisa had no idea where she’d gone.

E: Well, our dialogue has turned into a monologue, but I am undaunted. Are you unmoved to write to me because your meds have worked so well that you’re now perfectly functional, to the extent that you need not go searching for ways to narrate/make sense of your internal landscape?

Weirdly, this explanation was not far off. When Rebecca eventually did reply, the exchange did not end well. Elisa accused her of never apologizing, including for this moment. She accused Rebecca of political grandstanding in their most recent correspondence, rather than talking about wellness. But Elisa also confessed that perhaps Rebecca happened to be catching her on a bad day—Elisa’s mother had just phoned, and that call had driven her into a rage.

This last point gave Rebecca an opening to share something she’d clearly been wanting to say for a long time: Elisa was forever comparing her to her mother. But Elisa was also forever complaining about her mother, saying that she hated her mother. Her mother was, variously, “sadistic,” “untrustworthy,” and “a monster.” So finally Rebecca said:

In all the ways you’ve spoken about your mother, I don’t recall you ever describing to me the actual things she’s done, what makes you feel so destroyed by her.

To which Elisa replied that this was exactly the manipulative, hurtful type of gaslighting in which her mother would indulge.

It was at this moment that I, the reader, finally realized: This wasn’t just a fight over differences in philosophy.

If our friends become our substitute families, they pay for the failures of our families of origin. Elisa’s was such a mess—a brother long dead, parents long divorced—that her unconscious efforts to re-create it were always going to be fraught. And on some level, both women knew this. Elisa said it outright. When she first wrote in The Wellness Letters that Rebecca smelled like her mother, Elisa mused:

What’s my point? Something about mothers and children, and the unmothered, and human frailty, and imprinting. Something about friendship, which can and should provide support and understanding and company and a different sort of imprinting.

A different sort of imprinting. That’s what many of us, consciously or not, look for in friendships, isn’t it? And in our marriages too, at least if you believe Freud? Improved versions of those who raised us?

“I have no answers about how to ensure only good relationships,” Elisa concluded in one email to Rebecca. “But I guess practice? Trial and error? Revision?”

That really is the question. How do you ensure them?

Back in the 1980s, the Oxford psychologists Michael Argyle and Monika Henderson wrote a seminal paper titled “The Rules of Friendship.” Its six takeaways are obvious, but what the hell, they’re worth restating: In the most stable friendships, people tend to stand up for each other in each other’s absence; trust and confide in each other; support each other emotionally; offer help if it’s required; try to make each other happy; and keep each other up-to-date on positive life developments.

[Read: Arthur C. Brooks on how to make your friendships deeper]

It’s that last one where I’m always falling down. Keeping up contact, ideally embodied contact, though even semi-embodied contact—by voice, over the phone—would probably suffice. Only when reading Elisa and Rebecca in atom-splitting meltdown did I realize just how crucial this habit is. The two women had become theoretical to each other, the sum only of their ideas; their friendship had migrated almost exclusively to the page. “The writing took the place of our real-life relationship,” Elisa told me. “I felt like the writing was the friendship.”

In this way, Elisa and Rebecca were creating the conditions of a pandemic before there even was one. Had anyone read The Wellness Letters in 2019, they could have served as a cautionary tale: Our COVID year of lost embodied contact was not good for friendship. According to a September survey by Pew, 38 percent of Americans now say they feel less close to friends they know well.

The problem is that when it comes to friendship, we are ritual-deficient, nearly devoid of rites that force us together. Emily Langan, a Wheaton College professor of communication, argues that we need them. Friendship anniversaries. Regular road trips. Sunday-night phone calls, annual gatherings at the same rental house, whatever it takes. “We’re not in the habit of elevating the practices of friendship,” she says. “But they should be similar to what we do for other relationships.”

When I consider the people I know with the greatest talent for friendship, I realize that they do just this. They make contact a priority. They jump in their cars. They appear at regular intervals in my inbox. One told me she clicks open her address book every now and then just to check which friends she hasn’t seen in a while—and then immediately makes a date to get together.

Laura Carstensen told me during our chat that good friends are for many people a key source of “unconditional positive regard,” a phrase I keep turning over and over in my mind. (Not hers, I should note—the term was popularized in the 1950s, to describe the ideal therapist-patient relationship. Carstensen had the good sense to repurpose it.) Her observation perfectly echoed something that Benjamin Taylor, the author of the lovely memoir Here We Are, said to me when I asked about his close friendship with Philip Roth. What, I wanted to know, made their relationship work? He thought for so long that I assumed the line had gone dead.

[From the May 2020 issue: Benjamin Taylor on Philip Roth’s gift of empathy]

“Philip made me feel that my best self was my real self,” he finally said. “I think that’s what happens when friendships succeed. The person is giving back to you the feelings you wish you could give to yourself. And seeing the person you wish to be in the world.”

I’m not the sampler-making sort. But if I were, I’d sew these words onto one.

Perhaps the best book about friendship I’ve read is The Undoing Project, by Michael Lewis. That might be a strange thing to say, because the book is not, on its face, about friendship at all, but about the birth of behavioral economics. Yet at its heart is the story of an exceptionally complicated relationship between two giants of the field. Amos Tversky was a buffalo of charisma and confidence; Daniel Kahneman was a sparrow of anxiety and neuroticism. The early years of their collaboration, spent at Hebrew University in the late 1960s, were giddy and all-consuming, almost like love. But as their fame grew, a rivalry developed between them, with Tversky ultimately emerging as the better-known of the two men. He was the one who got invited to fancy conferences—without Kahneman. He was the one who got the MacArthur genius grant—not Kahneman. When Kahneman told Tversky that Harvard had asked him to join its faculty, Tversky blurted out, “It’s me they want.” (He was at Stanford at the time; Kahneman, the University of British Columbia.)

“I am very much in his shadow in a way that is not representative of our interaction,” Kahneman told the psychiatrist Miles Shore, who interviewed him and Tversky for a project on creative pairs. “It induces a certain strain. There is envy! It’s just disturbing. I hate the feeling of envy.”

Whenever I mentioned to people that I was working on a story about friendship in midlife, questions about envy invariably followed. It’s an irresistible subject, this thing that Socrates called “the ulcer of the soul.” Paul Bloom, a psychology professor at the University of Toronto, told me that many years ago, he taught a seminar at Yale about the seven deadly sins. “Envy,” he said dryly, “was the one sin students never boasted about.”

He’s right. With the exception of envy, all of the deadly sins can be pleasurable in some way. Rage can be righteous; lust can be thrilling; greed gets you all the good toys. But nothing feels good about envy, nor is there any clear way to slake it. You can work out anger with boxing gloves, sate your gluttony by feasting on a cake, boast your way through cocktail hour, or sleep your way through lunch. But envy—what are you to do with that?

Die of it, as the expression goes. No one ever says they’re dying of pride or sloth.

Yet social science has surprisingly little to say about envy in friendship. For that, you need to consult artists, writers, musicians. Gore Vidal complained, “Every time a friend succeeds, something inside me dies”; Morrissey sang “We Hate It When Our Friends Become Successful.” Envy is a ubiquitous theme in literature, spidering its way into characters as wide-ranging as Lenù and Lila, in Elena Ferrante’s Neapolitan novels, and pretty much every malevolent neurotic ever conjured by Martin Amis (the apotheosis being Richard Tull, the failed novelist and minor critic of The Information, who smacks his son when his rival lands on the best-seller list).

In the spring 2021 issue of The Yale Review, Jean Garnett, an editor at Little, Brown, wrote a terrific essay about envy and identical twinship that feels just as applicable to friendship. My favorite line, bar none: “I can be a very generous sister—maternal, even—as long as I am winning.”

With those 15 words, she exposes an uncomfortable truth. Many of our relationships are predicated on subtle differences in power. Rebalance the scales, and it’s anyone’s guess if our fragile egos survive. Underneath envy, Garnett notes, is the secret wish to shift those weights back in our favor, which really means the shameful wish to destroy what others have. Or as Vidal also (more or less) said: “It is not enough to succeed; a friend must also fail.”

At this point, pretty much everyone I know has been kicked in the head in some way. We’ve all got our satchel of disappointments to lug around.

But I did feel envy fairly acutely when I was younger—especially when it came to my girlfriends’ appearances and self-confidence. One friend in particular filled me with dread every time I introduced her to a boyfriend. She’s a knockout, turns heads everywhere; she both totally knows this and doesn’t have a clue. I have vivid memories of wandering a museum with her one afternoon and watching men silently trail her, finding all dopey manner of excuses to chat her up.

My tendency in such situations is to turn my role into shtick—I’m the wisecracking Daria, the mordant brunette, the one whose qualities will age well.

I hated pretending I was above it all.

What made this situation survivable was that this friend was—and still is—forever telling me how great I look, even though it’s perfectly apparent in any given situation that she’s Prada and I’m the knockoff on the street vendor’s blanket. Whatever. She means it when she tells me I look great. I love her for saying it, and saying it repeatedly.

In recent years, I have had one friend I could have badly envied. He was my office spouse for almost two decades—the other half of a two-headed vaudeville act now a quarter century old. We bounced every story idea off each other, edited each other, took our book leaves at the same time. Then I got a new job and he went off to work on his second book, which he phoned to tell me one day had been selected by … Oprah.

“You’re kidding!” I said. “That’s fucking amazing.”

Which, of course, it was. This wasn’t a lie.

But in the cramped quarters of my ego, crudely bound together with bubble gum and Popsicle sticks, was it all that fucking amazing?

No. It wasn’t. I wanted, briefly, to die.

Here’s the thing: I don’t allow myself too many silly, Walter Mitty–like fantasies of glory. I’m a pessimist by nature, and anyway, fame has never been my endgame in life.

But I did kinda sorta secretly hope to one day be interviewed from Oprah Winfrey’s yoga nook.

That our friendship hummed along in spite of this bolt of fortune and success in his life had absolutely nothing to do with me and everything to do with him, for the simple reason that he continued to be his vulnerable self. (It turns out that lucky, successful people still have problems, just different ones.) It helped that he never lost sight of my own strengths, either, even if I felt inadequate for a while by comparison. One day, while he was busy crushing it, I glumly confessed that I was miserable in my new job. Then go be awesome somewhere else, he said, as if awesomeness were some essential property of mine, how you’d define me if I were a metal or a stone. I think I started to cry.

It helped, too, that my friend genuinely deserved to be on Oprah. (His name is Bob Kolker, by the way; his book is Hidden Valley Road, and everyone should read it, because it is truly a marvel.)

It’s the almost-ness of envy that kills, as Garnett points out in her essay—the fact that it could have or should have been us. She quotes Aristotle’s Rhetoric : “We envy those who are near us in time, place, age, or reputation … those whose possession of or success in a thing is a reproach to us: these are our neighbors and equals; for it is clear that it is our own fault we have missed the good thing in question.”

And I have no clue what I would have done if Bob hadn’t handled his success with humility and tact. If he’d become monstrously boastful—or, okay, even just a little bit complacent—I honestly think I wouldn’t have been able to cope. Adam Smith noted how essential this restraint is in The Theory of Moral Sentiments. If a suddenly successful person has any judgment, he wrote, that man will be highly attuned to his friends’ envy, “and instead of appearing to be elated with his good fortune, he endeavours, as much as he can, to smother his joy, and keep down that elevation of mind with which his new circumstances naturally inspire him.”

This is, ultimately, what Amos Tversky failed to do with Daniel Kahneman, according to The Undoing Project. Worse, in fact: Tversky refused to address the imbalance in their relationship, which never should have existed in the first place. Kahneman tried, at first, to be philosophical about it. “The spoils of academic success, such as they are—eventually one person gets all of it, or gets a lot of it,” he told Shore, the psychiatrist studying creative pairs. “That’s an unkindness built in. Tversky cannot control this, though I wonder whether he does as much to control it as he should.”

But Kahneman wasn’t wondering, obviously. This was an accusation masquerading as a suspicion. In hindsight, the decisive moment in their friendship—what marked the beginning of the end—came when the two were invited to deliver a couple of lectures at the University of Michigan. At that point, they were working at separate institutions and collaborating far less frequently; the theory they presented that day was one almost entirely of Kahneman’s devising. But the two men still jointly presented it, as was their custom.

After their presentation, Tversky’s old mentor approached them both and asked, with genuine awe, where all those ideas came from. It was the perfect opportunity for Tversky to credit Kahneman—to right the scales, to correct the balance, to pull his friend out from his shadow and briefly into the sun.

Yet Tversky didn’t. “Danny and I don’t talk about these things” was all he said, according to Lewis.

And with that, the reader realizes: Kahneman’s second-class status—in both his own imagination and the public’s—was probably essential to the way Tversky conceived of their partnership. At the very least, it was something Tversky seemed to feel zero need to correct.

Kahneman continued to collaborate with Tversky. But he also took pains to distance himself from this man, with whom he’d once shared a typewriter in a small office in Jerusalem. The ill feelings wouldn’t ease up until Tversky told Kahneman he was dying of cancer in 1996.

So now I’m back to thinking about Nora Ephron’s friends, mourning all those dinners they never had. It’s the dying that does it, always. I started here; I end here (we all end here). It is amazing how the death of someone you love exposes this lie you tell yourself, that there’ll always be time. You can go months or even years without speaking to a dear old friend and feel fine about it, blundering along, living your life. But discover that this same friend is dead, and it’s devastating, even though your day-to-day life hasn’t changed one iota. You’re rudely reminded that this is a capricious, disordered cosmos we live in, one that suddenly has a friend-size hole in it, the air now puckered where this person used to be.

Last spring, an old friend of my friend David died by suicide. David had had no clue his friend was suffering. When David had last seen this man, in September 2020, he’d seemed more or less fine. January 6 had wound him up more than David’s other friends—he’d fulminate volcanically about the insurrection over the phone, practically burying David under mounds of words—but David certainly never interpreted this irritating development as a sign of despair.

But David did notice one curious thing. Before the 2020 election, he had bet this friend $10,000 that Donald Trump would win. David isn’t rich, but he figured the move was the ultimate hedge—if he won, at least he got 10 grand, and if he lost, hey, great, no more Trump. On November 7, when it became official—no more Trump!—David kept waiting for a phone call. It never came. He tried provoking his friend, sending him a check for only $15.99, pointing out that they’d never agreed on a payment schedule.

His friend wrote back a sharp rebuke, saying the bet was serious.

David sent him a check for $10,000.

His friend wordlessly cashed it.

David was stunned. No gloating phone call? Not even a gleeful email, a crowing text? This was a guy who loved winning a good bet.

Nothing. A few months later, he was found dead in a hotel.

The suicide became a kind of reckoning for David, as it would for anyone. Because he’s a well-adjusted, positive sort of fellow, he put his grief to what seemed like constructive use: He wrote an old friend from high school, once his closest friend, the only one who knew exactly how weird their adolescence was. David was blunt with this friend, telling him in his email that a good friend of his had just died by suicide, and there was nothing he could do about it, but he could reach out to those who were still alive, those he’d lost track of, people like him. Would he like to catch up sometime? And reminisce?

David never heard back. Distraught, he contacted someone the two men had in common. It turns out his friend’s life hadn’t worked out the way he’d wanted it to. He didn’t have a partner or kids; his job wasn’t one he was proud of; he lived in a backwater town. Even though David had made it clear he just wanted to talk about the old days, this man, for whatever reason, couldn’t bring himself to pick up the phone.

At which point David was contending with two friendship deaths—one literal, the other metaphorical. “You know what I realized?” he said to me. “At this age, if your romantic life is settled”—and David’s is—“it’s your friends who break your heart. Because they’re who’s left.”

What do you do with friendships that were, and aren’t any longer?

By a certain age, you find the optimal perspective on them, ideally, just as you do with so many of life’s other disappointments. If the heartbreak of midlife is realizing what you’ve lost—that sad inventory of dusty shelves—then the revelation is discovering that you can, with effort, get on with it and start enjoying what you have.

The psychoanalyst Erik Erikson made a point of emphasizing this idea in his stages of psychosocial development. The last one, “integrity versus despair,” is all about “the acceptance of one’s one and only life cycle and of the people who have become significant to it as something that had to be.”

An awfully tidy formulation, admittedly, and easier said than done. But worth striving for nonetheless.

Elisa recently wrote to me that what she misses about Rebecca is “the third thing that came from the two of us. the alchemy of our minds and hearts and (dare i say?) souls in conversation. what she brought out in me and what i brought out in her, and how those things don’t exist without our relationship.”

[From the July/August 2014 issue: The power of creative pairs]

And maybe this is what many creative partnerships look like—volatile, thrilling, supercharged. Some can’t withstand the intensity, and self-destruct. It’s what happened to Kahneman and Tversky. It’s famously what happens to many bands before they dissolve. It’s what happened to Elisa and Rebecca.

Elisa hopes to now make art of that third thing. To write about it. Rebecca remains close in her mind, if far away in real life.

Of course, as Elisa points out (with a hat-tip to Audre Lorde), all deep friendships generate something outside of themselves, some special and totally other third thing. Whether that thing can be sustained over time becomes the question.

The more hours you’ve put into this chaotic business of living, the more you crave a quieter, more nurturing third thing, I think. This needn’t mean dull. The friends I have now, who’ve come all this distance, who are part of my aging plan, include all kinds of joyous goofballs and originals. There’s loads of open country between enervation and intoxication. It’s just a matter of identifying where to pitch the tent. Finding that just-right patch of ground, you might even say, is half the trick to growing old.

This article appears in the March 2022 print edition with the headline “It’s Your Friends Who Break Your Heart.” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.

The One Decision Breyer Can’t Make

2021-11-18T06:00:00-05:00

In 2013, Barack Obama hosted Ruth Bader Ginsburg for lunch in his private dining room, hoping to gingerly raise the possibility of her retirement while he still occupied the White House and Democrats still controlled the Senate.

She got the message. She also ignored it. Ginsburg didn’t suffer much of a reputational hit for her defiance, at least not at the time. The woman who’d been barred from one of the reading rooms at Harvard Law when she was a student, the woman who’d been denied a clerkship with Felix Frankfurter partly because she was a mother—of course she wasn’t going to daintily hang up her jabot just because the boys were telling her to. For years, she’d stood outside the doors of their institutions with an ice pick, chip-chip-chipping her way in. She’d bested three types of cancer. She did daily sets of planks. And now they were telling her it was time to go? Really?

In hindsight, we know that this decision had catastrophic consequences for the causes to which she devoted her career. RBG—Washington’s least likely crossover star, a super-signifier of all things fabulously feminist and liberal—may, with time, inadvertently live up to the Notorious appended to her name, in spite of her extraordinary accomplishments.

Which brings us to Justice Stephen Breyer.

At 83, he has not announced his retirement. Even though he finds himself in the functional equivalent of that Obama-Ginsburg moment in 2013, with a Democrat in the White House and Democrats in control of the Senate. Even though Joe Biden’s approval rating is at 41 percent. Even though Democrats just lost the governor’s mansion in one blue state (Virginia) and barely held on to it in another (New Jersey). Even though congressional Democrats are currently careening toward a 2022 midterm wipeout, with Republicans testing better on generic ballots than they have in 40 years.

[Linda Greenhouse: When dissent is all there is]

Two years ago, Jeffrey Sonnenfeld, a dean at the Yale School of Management and the author of The Hero’s Farewell, memorably told me that when CEOs manage to retire in a timely fashion, it’s frequently because they have a negative role model in mind, an uneasy memory of some muckety-muck who grossly overstayed his or her welcome.

So why on earth hasn’t Ruth Bader Ginsburg served as a cautionary tale?

Only Breyer can say, of course. For all we know, she has served such a role, and he simply hasn’t yet announced his plans to retire by the end of June, when the Court typically goes into recess. (My money is on this option, actually—that he’ll say something in January.) But part of me, I’ll confess, understands why retirement has recently become such a vexed subject for Supreme Court justices. It places the onus on them.

The Supreme Court offers a rarity in American employment life: a sinecure. The average American now lives to be roughly 78, and plenty of fabled justices have lived and served far beyond that (including Thurgood Marshall, Louis Brandeis, and Oliver Wendell Holmes Jr.). Why, if you’re still healthy, would you voluntarily step away from a job you’re still enjoying? To do so violates not just your own intuition, but your own self-concept—one that’s quite justifiably predicated on the notion of your own competence. “My senior colleague, Justice John Paul Stevens, he stepped down when he was 90,” Ginsburg told CNN in 2018, “so I think I have about at least five more years.”

When we repeatedly admonish older public officials to retire, we’re erasing their individuality and turning them into actuarial statistics, which no matter how you look at it is rather ugly—no one likes to be told that their mortality is becoming a problem. In the most practical sense, we’re asking them to void their calendar, to replace something with nothing at all.

I keep thinking about the fact that Ginsburg was a widow when she was being pressured to retire. Marty, the love of her life, had died in 2010, and here she was, being asked to wake up each morning and not go to work. How many older people consider their work life essential to their well-being? (There’s no shortage of data about this, at least for those who have been involuntarily put out to pasture. Their mental health unambiguously takes a dive.)

Walking away is especially challenging for those whose identity is entirely reliant on the institution they serve. Vermont’s Patrick Leahy, 81, may have just announced his plans to retire from the Senate, but Iowa’s Chuck Grassley, 88, is planning on running for his eighth term in 2022, and California’s Dianne Feinstein has filed paperwork to run again in 2024, when she’ll be 91. (Our Senate is now the oldest it’s been in our history. Twenty-three members are in their 70s.)

“If you’re a violinist, you can play in retirement,” Sonnenfeld told me in that same conversation. “But if you’re a conductor, where your identity depends on the group, you can’t really replicate that in retirement.”

[Adam Cohen: Justice Breyer’s legacy-defining decision]

So what to do?

Roughly a decade ago, when some of the most senior faculty at Johns Hopkins University were showing a reluctance to retire, the dean of the Krieger School of Arts and Sciences, Katherine Newman, had an inspired idea: Why not start a dedicated academy for emeritus faculty, where they could still organize conferences, do research, and enjoy the fellowship of their peers? “Everybody I talked to said it wasn’t the money they were worried about,” she told me. They’d paid for their homes; their kids were launched; they had old-fashioned pensions. “They weren’t interested in teaching or burning up the landscape with more publications,” she continued. “It was their identity they couldn’t let go of, the purpose, the engagement. So the Academy at Hopkins was born to retain those ties.”

This wasn’t some hollow, mollifying gesture, the creation of this academy. Newman put it right next to the president’s house. She gave all the professors a small budget to do research and attend conferences. The academy itself had a budget to organize conferences and bring in visiting scholars. By the time it was up and running, roughly a dozen professors had left their department and joined. “Just because you move on,” said Newman, now the system chancellor of academic programs at the University of Massachusetts, “doesn’t mean you move into the shadows.”

Is this a perfect parallel? No. But it isn’t far off. Judges, like academics, consider their profession a calling. They do the work because they love it and find it meaningful, not for the money. It’s true that judges have power, something that academics do not, except within their own fiefdom. But federal judges also have an option just like the Academy at Johns Hopkins, one that helps them retain their esteem and power: They can hear cases “by designation” on circuit-court panels around the country. (Sandra Day O’Connor has done exactly this, in fact.) It essentially means that they’re guest stars or pinch hitters for a day. Does this arrangement have the same glamour or power as the highest court in the land? No. But is it a way to remain engaged? Yes. And maybe to take one extra lap around the rink, gathering roses.

In an August interview with The New York Times’ Adam Liptak, Breyer suggested that he understood how dire the consequences would be if he retired at the wrong moment, recalling “approvingly” something that the late Justice Antonin Scalia had told him, which is that he didn’t want a successor who’d reverse everything he’d worked so hard to achieve.

That’s the good news. The bad news is that Breyer made a revealing confession during that same interview: “I don’t like making decisions about myself.” It was, at first blush, a strange thing for a justice to say. All they do is make decisions. They are deciders by profession. But about myself was the operative phrase in this case. The responsibility of making a choice about his own professional future was such agony to Breyer that he implied he’d prefer if the decision were made for him—by term limits, specifically. “It would make my life easier,” he admitted.

Of all the reforms that Biden’s bipartisan commission on the Supreme Court is entertaining, it so happens that term limits are the most popular. But for now, the decision to step down remains Breyer’s to make, and every day he doesn’t make it poses a risk to his legacy. The Democratic majority in the Senate isn’t really a majority at all, but a tie. Its power could all unravel in a trice.

[Read: Transforming America with a one-vote majority]

If Biden isn’t able to get Breyer’s successor confirmed by the Senate, it’d be a disaster, not just for Democrats, but for American democracy in general, imperiling the very legitimacy of the Court. We might like to believe that the law is the law, untainted by ideology. But instinctively we know that it isn’t: A justice’s interpretation of the Constitution often depends on their politics. Voters cast their ballot for president with that in mind. But this June, Senate Minority Leader Mitch McConnell refused to say whether a Republican Senate would confirm a Biden nominee to the Court in 2023, should the GOP have the good fortune to recapture that chamber, and he said it was “highly unlikely” that a Republican Senate would confirm a Biden nominee to the Court in 2024.

As it is, the Supreme Court hasn’t had a majority of Democratic-appointed justices since before Amy Coney Barrett was born, noted Richard Primus, a professor at the University of Michigan Law School, in a recent email.

“If, over time, judicial decisions are made partly by the nominees of each party, then both parties feel they have a stake in the institution,” he added. “I sit still when the refs make close calls your way because you sit still when they make close calls my way.” But if decisions are made only by one party’s appointees, he wrote, “the other party’s sense that the game is fair is going to take a hit—and even more so if that party has won the popular vote in seven of the last eight presidential elections and still has no prospect of appointing a Court majority.”

What Primus didn’t say—but of course it was implied—is that Democrats actually lost two of those seven presidential elections, even though they won the popular vote. A 7–2 conservative Court, with two justices owing their seat to a Senate Republican leader hell-bent on obstruction, would be one more step toward minoritarian rule in a country that’s already slouching in that direction. According to a recent analysis in the Times, Republicans could win back the House of Representatives in 2022 based on redistricting changes alone; according to Vox, we now live in a country where the Democratic half of the Senate represents 41,549,808 more people than the Republican half.

This problem has no short-term solution. Harm reduction is about the most we can ask. Breyer can play a modest role in keeping our institutions from disintegrating completely into dust. Asking him to retire may be harsh, even unfair. But if he can summon the will to make this choice, it’ll be one of the most important decisions he’s ever made.

What Bobby McIlvaine Left Behind

2021-08-09T06:00:00-04:00

Editor’s Note: This story earned the 2022 Pulitzer Prize for Feature Writing.

This article was published online on August 9, 2021.

This article was featured in One Story to Read Today, a newsletter in which our editors recommend a single must-read from The Atlantic, Monday through Friday. Sign up for it here.

When Bobby McIlvaine died on September 11, 2001, his desk at home was a study in plate tectonics, coated in shifting piles of leather-bound diaries and yellow legal pads. He’d kept the diaries since he was a teenager, and they were filled with the usual diary things—longings, observations, frustrations—while the legal pads were marbled with more variety: aphoristic musings, quotes that spoke to him, stabs at fiction.

The yellow pads appeared to have the earnest beginnings of two different novels. But the diaries told a different kind of story. To the outside world, Bobby, 26, was a charmer, a striver, a furnace of ambition. But inside, the guy was a sage and a sap—philosophical about disappointments, melancholy when the weather changed, moony over girlfriends.

Less than a week after his death, Bobby’s father had to contend with that pitiless still life of a desk. And so he began distributing the yellow legal pads, the perfect-bound diaries: to Bobby’s friends; to Bobby’s girlfriend, Jen, to whom he was about to propose. Maybe, he told them, there was material in there that they could use in their eulogies.

One object in that pile glowed with more meaning than all the others: Bobby’s very last diary. Jen took one look and quickly realized that her name was all over it. Could she keep it?

Bobby’s father didn’t think. He simply said yes. It was a reflex that he almost instantly came to regret. “This was a decision we were supposed to make together,” his wife, Helen, told him. Here was an opportunity to savor Bobby’s company one last time, to hear his voice, likely saying something new. In that sense, the diary wasn’t like a recovered photograph. It raised the prospect, however brief, of literary resurrection. How, Helen fumed, could her husband not want to know Bobby’s final thoughts—ones he may have scribbled as recently as the evening of September 10? And how could he not share her impulse to take every last molecule of what was Bobby’s and reconstruct him?

“One missing piece,” she told me recently, “was like not having an arm.”

Over and over, she asked Jen to see that final diary. Helen had plenty of chances to bring it up, because Jen lived with the McIlvaines for a time after September 11, unable to tolerate the emptiness of her own apartment. Helen was careful to explain that she didn’t need the object itself. All she asked was that Jen selectively photocopy it.

Jen would say she’d consider it. Then nothing would happen. Helen began to plead. I just want the words, she’d say. If Bobby’s describing a tree, just give me the description of the tree. Jen demurred.

The requests escalated, as did the rebuffs. They were having an argument now. Helen, Jen pointed out, already had Bobby’s other belongings, other diaries, the legal pads.

When she finally left the McIlvaines’ house for good, Jen slammed the door behind her, got into her car, and burst into tears. Shortly after, she wrote Helen a letter with her final answer: No, just no. If Helen wanted to discuss this matter any further, she’d have to do so in the presence of Jen’s therapist.

Helen and her husband never saw Jen again. “She became a nonperson to me,” Helen told me. Today, she can’t so much as recall Jen’s last name.

But for years, Helen thought about that diary. Her mind snagged on it like a nail; she needled her husband for giving it away; it became the subject of endless discussion in her “limping group,” as she calls it, a circle of six mothers in suburban Philadelphia who’d also lost children, though not on September 11. They became indignant on her behalf. A number proposed, only half jokingly, that they break into Jen’s apartment and liberate the diary. “You don’t get any more memories,” one of the women told me. “So anything written, any video, any card—you cling to that. That’s all you’re going to get for life.”

The McIlvaines would have to make do with what they already had. Eventually, they did. Three words of Bobby’s became the family motto: Life loves on. No one could quite figure out which diary or legal pad it came from, but no matter. Helen wears a silver bracelet engraved with this phrase, and her husband got it tattooed in curlicue script on his upper arm.

Bobby McIlvaine, with his parents, Helen and Bob Sr., at his Princeton graduation in 1997. Bobby’s body was found in the wreckage of the Twin Towers. (Danna Singer; original photo courtesy of the McIlvaine family)

Here I should note that I know and love the McIlvaine family. On my brother’s first day of college, he was assigned to a seven-person suite, and because he arrived last, Bobby became his roommate. My brother often thinks about what a small miracle that was: If he’d arrived just 30 minutes earlier, the suite would have been an isomer of itself, with the kids all shuffled in an entirely different configuration. But thanks to a happy accident of timing, my brother got to spend his nights chattering away with this singular kid, an old soul with a snappity-popping mind.

Eight years later, almost to the day, a different accident of timing would take Bobby’s life. He and my brother were still roommates, but this time in a two-bedroom apartment in Manhattan, trying to navigate young adulthood.

Back when Bobby was still alive, I would occasionally see the McIlvaines. They struck me as maybe the nicest people on the planet. Helen taught reading to kids who needed extra help with it, mainly in a trailer in the parking lot of a Catholic high school. Bob Sr. was a teacher who specialized in working with troubled adolescents; for a decade, he’d also owned a bar. Jeff, Bobby’s younger brother, was just a kid in those days, but he was always unreasonably good-natured when he turned up.

And Bobby: My God. The boy was incandescent. When he smiled it looked for all the world like he’d swallowed the moon.

Then, on the morning of September 11, 2001, Bobby headed off to a conference at Windows on the World, a restaurant in a building to which he seldom had reason to go, for a media-relations job at Merrill Lynch he’d had only since July. My brother waited and waited. Bobby never came home. From that point forward, I watched as everyone in the blast radius of this horrible event tried to make sense of it, tried to cope.

Early on, the McIlvaines spoke to a therapist who warned them that each member of their family would grieve differently. Imagine that you’re all at the top of a mountain, she told them, but you all have broken bones, so you can’t help each other. You each have to find your own way down.

It was a helpful metaphor, one that may have saved the McIlvaines’ marriage. But when I mentioned it to Roxane Cohen Silver, a psychology professor at UC Irvine who’s spent a lifetime studying the effects of sudden, traumatic loss, she immediately spotted a problem with it: “That suggests everyone will make it down,” she told me. “Some people never get down the mountain at all.”

This is one of the many things you learn about mourning when examining it at close range: It’s idiosyncratic, anarchic, polychrome. A lot of the theories you read about grief are great, beautiful even, but they have a way of erasing individual experiences. Every mourner has a very different story to tell.

That therapist was certainly right, however, in the most crucial sense: After September 11, those who had been close to Bobby all spun off in very different directions. Helen stifled her grief, avoiding the same supermarket she’d shopped in for years so that no one would ask how she was. Jeff, Bobby’s lone sibling, had to force his way through the perdition of survivor’s guilt. Bob Sr. treated his son’s death as if it were an unsolved murder, a cover-up to be exposed. Something was fishy about 9/11.

And then there was Jen. She’s married now, has two terrific kids, but she wonders sometimes, when she’s quarreling with her husband or feeling exasperated with her life, what it would have been like if she’d been with Bobby all this time. I tracked her down in April, and of course she’s nothing like the heartless villainess I had come to imagine her to be. That was just the story I’d told myself, the one I’d used to make sense of the senseless, to give shape to my own rage. Like I said: We all need our stories.

One thing I knew when I finally visited her, though: I wanted to see that diary. And I wanted the McIlvaines to see it too. “I’m not a saver,” she said when we first met up for cocktails. My heart froze.

But she still had it, just so you know.

Listen to Jen Senior discuss this story on The Experiment podcast, a show about people navigating our country's contradictions.Listen and subscribe: Apple Podcasts | Spotify | Stitcher | Google Podcasts

Tell me about your son.

Helen welcomed this invitation the first time she heard it, because it focused her thinking, gave her an outlet for her grief. But soon it filled her with dread, and she felt herself straining under the weight of it. How can you possibly convey who your firstborn was or what he meant to you?

Helen usually starts by telling people that Bobby went to Princeton, but that’s hardly because she’s status-fixated. It’s because she and Bob Sr. did not expect to have a child who went to an Ivy League school. They both went to state schools in Pennsylvania, not even particularly well-known ones. Both of their kids were sporty. But when Bobby was 8, his third-grade teacher said to them—and they both remember her exact words—“Start saving your pennies.” This one’s education might cost you.

“The amount of things that had to go right for my brother to go to Princeton were, like, astronomical,” says Jeff, a high-school biology teacher and track coach in Somerdale, New Jersey. “To us, it was like someone from our family becoming the president.”

This is how everyone in the family remembers Bobby: as a sui generis creature, exceptional and otherworldly, descended from the heavens through a basketball hoop.

He was an intense student. He was an even more intense athlete, competitive to the point of insolence. Writing in The Philadelphia Inquirer last year, Mike Sielski, an old high-school classmate of Bobby’s, described him as “all bones and acute angles and stiletto elbows” on the basketball court. It was a goose-pimpling story, one he had occasion to write because another classmate of theirs had unearthed 36 seconds of video from 1992, in which a teenage Bobby McIlvaine throws an immaculate pass that sets up an immaculate shot that flies right over the teenage head of …

Kobe Bryant.

Bobby scored 16 points off Kobe and his team that day, in addition to setting up that floater.

When he arrived at college, Bobby retained a bit of that alpha-dog streak. He was still competitive, even while playing mindless, made-up dorm games. He wasn’t bashful about ribbing friends. He was tall and handsome and had a high level of confidence in his sense of style, which may or may not have been justified. “There were times you wanted him to step back and not be so serious and intense,” says Andre Parris, a former suitemate and one of Bobby’s closest friends. “But it was part of who and what he was, and what he thought he had to do to get ahead.”

What “getting ahead” meant to Bobby was complicated. Financial worries are all over his journals from those years (I don’t feel like a real person sitting here with no money, reads one typical entry). Yet he was conflicted about what it might take to make money, flummoxed by all the kids who were beating a dutiful path to business school. (Is youth really just a hobby? he asked about them, with evident pique.) He wanted to be a writer. Which paid nothing, obviously.

This conflict continued into his brief adulthood. He spent two years in book publishing before realizing that it was no way to make a living, and switched instead to corporate PR. He could still write his novels on the side.

But for all Bobby’s hunger and swagger, what he mainly exuded, even during his college years, was warmth, decency, a corkscrew quirkiness. He doted on girlfriends. He gave careful advice. His senior year, he took a modern-dance class because, well, why not? It would be fun. And different. His final project involved physically spelling out his girlfriend’s name.

That was just a lark, though. Bobby’s real intellectual passion was African American culture and history. After Bobby died, the McIlvaines got not one but two condolence notes from Toni Morrison, with whom he’d taken a class. The second came with the term paper he’d written for her. “It is certainly one of the more accomplished and insightful,” she wrote, “as was he.” His senior thesis received an honorable mention for the main prize in the department of African American studies.

At his funeral, Bobby’s oldest friends spoke of what a role model he was to them. I was five years older than Bobby, which meant I mainly saw him as charming and adorable, intelligent and unstoppable.

But strangely, I wanted to impress him too. When I started my job at New York magazine, writing short features in the theater section each week, Bobby gave me grief about ending each one of them with a quote. At first I was annoyed, defensive—the little shit—but in hindsight, it’s amazing that I cared so much about this 22-year-old’s opinion, and even more amazing that he’d read me attentively enough to discover an incipient tic. To this day, I credit Bobby with teaching me a valuable lesson: If you’re going to cede the power of the last word to someone else, you’d better be damn sure that person deserves it.

Bob McIlvaine Sr. cries easily and regularly when you speak to him. Everyone in the family knows this and has grown accustomed to it—his grief lives close to the surface, heaving up occasionally for air. He cried at our first lunch after the McIlvaines picked me up at the train station a few months ago; he cried again just minutes into our first chat when the two of us were alone; he cried in a recent interview with Spike Lee for a documentary series about 9/11 on HBO.

In talking with Bob Sr., something heartbreaking and rudely basic dawned on me: September 11 may be one of the most-documented calamities in history, but for all the spools of disaster footage we’ve watched, we still know practically nothing about the last moments of the individual dead. It’s strange, when you think about it, that an event so public could still be such a punishing mystery. Yet it is, and it is awful—the living are left to perseverate, to let their imaginations run amok in their midnight corrals.

“The only thing I do is 9/11 stuff,” Bob McIlvaine Sr. says. “My whole basis of everything revolves around the day.” (Danna Singer)

For Bob Sr., what that meant was wondering where Bobby was and what he was doing when the chaos began. For years, that was all he could think about. The idea of Bobby suffering tortured him. Was he incinerated? Was he asphyxiated? Or even worse? “I think Bobby jumped,” he shouted up the stairs one day to his wife. The thought nearly drove Helen mad.

Over time, it became clear that Bobby didn’t jump. Bobby’s was one of fewer than 100 civilian corpses recovered from the wreckage. But it haunted Bob Sr. that he never saw the body. At the morgue on September 13, the pathologist strongly advised him against viewing it. Only years later—four? five? he can no longer remember—did he finally screw up the courage to go to the medical examiner’s office in New York City and get the official report.

[From the July/August, September, and October 2002 issues: Excerpts from William Langewiesche’s American Ground: Unbuilding the World Trade Center]

That’s when everything changed. “My whole thesis—everything I jump into now—is based upon his injuries,” he tells me. “Looking at the body, I came to the conclusion that he was walking in and bombs went off.”

A controlled demolition, he means. That is how he thinks Bobby died that day, and how the towers eventually fell: from a controlled demolition. It was an inside job, planned by the U.S. government, not to justify the war in Iraq—that was a bonus—but really, ultimately, to destroy the 23rd floor, because that’s where the FBI was investigating the use of gold that the United States had unlawfully requisitioned from the Japanese during World War II, which it then leveraged to bankrupt the Soviet Union. The planes were merely for show.

Does a man wake up on September 12, 2001, and believe such a thing? No. This belief takes shape over the span of years, many years.

That first year, Bob Sr. was numb. His sole objective was to get through each day. But he eventually got involved in a group called 9/11 Families for Peaceful Tomorrows, protesting the wars in Afghanistan and Iraq. “It opened up my life,” he tells me. “I became very active. That’s how I grieved. It was perfect.”

Before Bobby went to Princeton, Bob Sr. had been indifferent to politics, voting sometimes for Democrats and sometimes for Republicans—including, he thinks, Ronald Reagan. “I was not a well-read person,” he says. “I owned a bar in the city. If I even mentioned the word progressive, my customers probably would have shot me.”

But then Bobby started taking classes with Princeton’s glamorous tenured radicals. He started writing for the school’s Progressive Review. His father devoured everything he wrote. Soon, he had Bob Sr. reading Howard Zinn’s A People’s History of the United States and Z Magazine, the radical monthly. Bob Sr. has been interested in politics ever since. “That’s all because of Bobby.”

So this anti-war activity? It was perfect—a natural outlet for him.

But as time wore on, Bob Sr. got impatient. In 2004, he went down to Washington to hear Condoleezza Rice speak to the 9/11 Commission, and her testimony—or lack thereof, he’d say—so enraged him that he left in a huff, cursing in the halls of Congress. “I wanted answers,” he explains. Yet no answers were forthcoming. That’s when he realized: The government was hiding something. “I became militant,” he says. “To this day, I’m very militant.”

Bob Sr. is a bespectacled, soft-spoken man, slender and slightly stooped. But his affect is deceptive. We’re sitting in the upstairs den of the McIlvaines’ three-bedroom home in Oreland, Pennsylvania, the same house where Bobby and Jeff grew up. It’s sweet, modest, cluttered with family pictures. But this room has been transformed into a 9/11 research bunker, stuffed with books and carefully organized files—by event, subject, country. The largest piece of art on the wall is a world map freckled with pins marking every country that’s invited Bob Sr. to tell his story.

“I speak out so much, the word just spreads,” he tells me. “I’ll show you Italy.” Pictures and clippings from a Rome film festival, he means, because he appeared in the documentary Zero: Inchiesta sull’11 Settembre. He got to walk the red carpet. “The Russians came over. They spent two days here, wanted to hear what I had to say.” Meaning Russian state news agencies. They parked themselves on the McIlvaines’ back deck. “France came here, stayed a few days to talk.” Same deal, though he doesn’t remember which media outfit. (“My dad is practically a celebrity in that community,” Jeff told me.)

Crucial to Bob Sr.’s understanding of September 11—that it was the cynical skulduggery of the U.S. government, not a grisly act of terrorism by jihadists using commercial planes filled with helpless civilians—is the work of Architects & Engineers for 9/11 Truth, which popularized the idea that jet fuel couldn’t burn at a high enough temperature to melt beams into molten steel. This is, it should go without saying, contrary to all observable fact.

But this theory is what Bob Sr. is eager to illustrate for me. He has visuals prepared, lots of building diagrams. I tell him we’ll get there; I just want to ask a few more questions about those early days—

He’s disappointed. “Everything I’ve done in my life is based upon those seconds.” This is something he very much wants to discuss.

And so we discuss it. Only a preplanned detonation, he argues, could bring down those towers, and only a lobby embroidered with explosives could explain the injuries to Bobby’s body. He has the full medical examiner’s report.

It is very upsetting to read. Most of Bobby’s head—that beautiful face—was missing, as was most of his right arm. The details are rendered in generic diagrams and the dispassionate language of pathology (“Absent: R upper extremity, most of head”), as well as a chilling pair of responses on a standard checklist.

Hair color: None.

Eye color: None.

But a subtle thing made Bob Sr. think something was amiss. The report describes many lacerations and fractures, but they appear almost entirely on the front of Bobby’s body. The back of his corpse is basically described as pristine, besides multiple fractures to what remained of his head.

The story we’ve told ourselves all these years is that Bobby had already left the building when the planes hit. Bobby didn’t work in the World Trade Center; from what we could piece together, he’d gone to Windows on the World simply to help a new colleague set up for a morning presentation at an all-day conference, not to attend it. So Bobby did his part, was our assumption, then said his goodbyes and was making his way back to nearby Merrill Lynch when he was suddenly killed in the street by flying debris.

Bob Sr. doesn’t buy it. If that were true—if Bobby were moving away from the World Trade Center—wouldn’t he have fallen forward? Wouldn’t there be injuries on his back? “If you’re running away, it’d be more of a crushing type of thing,” he tells me. “Probably every bone in his body would be breaking.”

I tell him I’m not a pathologist, but it seems just as plausible to me that he heard the roaring sound of a plane flying too low and too fast, or maybe the sound of a hijacked aircraft hitting the North Tower itself, and turned around to see what had happened and never knew what hit him.

He rejects this explanation. “My theory is he was walking into the building at the time, because he had the conference up there.”

“I thought his conference started at 8:30?” I ask. The first plane hit at 8:46 a.m. That would have meant Bobby was arriving late.

“I thought it started at 9,” Bob Sr. says.

“Isn’t there a way to find out?” I ask.

“You know, to tell you the truth, I never …”

He’d never checked.

Breakfast and registration for the conference began at 8 o’clock. Opening remarks were scheduled for 8:30. Bobby’s colleague was scheduled to speak at 8:40. The full brochure is available on the 9/11 Memorial & Museum’s website.

When I eventually visit Jen—she of the purloined diary, the woman to whom Bobby was about to be engaged—she shows me the daily planner that was sitting on his desk at Merrill. It’s cluttered with appointments. But the day of September 11 is blank. Whatever he was doing was not significant enough to merit its own entry.

[Read: Everything my husband wasn’t there for]

My brother also tells me that he still has the note Bob Sr. left for him on his kitchen table on Thursday, September 13. It said that an investigator with the New York City Police Department, Joe Gagliardi, had just come by to drop off the wallet they’d pulled from Bobby’s pocket. One line in particular stood out. He was found on the perimeter. Not near the lobby.

“Was he really?” Bob Sr. says when I phone him and ask him about the note. He’d completely forgotten that he’d written it. “If that’s true, that’s great.” He thinks for a moment. “Though the perimeter—he still could have been 10 feet away. He certainly wasn’t 100 feet from the building.”

I then tell him about the conference schedule, which actually did leave open the possibility that he was 100 feet from the building. If he’d left before his colleague started speaking—or the opening remarks—he could have been quite close to his office at Merrill Lynch, a five-minute walk away. Bob Sr. takes it all in. He repeats that he finds Bobby’s injuries too extreme, too savage, to be caused by flying debris. “But you know what?” he finally says. “That’s no longer relevant to me. My whole thing is who did it and why. It’s been 20 years and I still can’t get any answers.”

It takes me some time, but eventually I summon the courage to ask Bob Sr. an obvious question: What makes his claims about the destruction of the World Trade Center more credible than the claims of, for instance, Donald Trump supporters who say the 2020 election was stolen?

“I can believe it was stolen!” he tells me. “But I’m not going to go around preaching that, because I don’t know. Because I’m doing my homework.” Bob Sr. is always reading. His latest is a biography of Allen Dulles. “Probably 99.9 percent of the people that you will find in those radical groups—the Oath Keepers, whatever—they really haven’t done any research.”

But then he adds that he sympathizes with Trump voters, as much as he despises Trump himself. “This country hasn’t done anything for them in such a long time. So you can’t blame them for voting for him.”

Bob Sr. asks if I would like to see Bobby’s wallet. I didn’t realize he had it, but he does, stuffed in a biohazard bag, itself entombed in a plastic box in the room that once belonged to Bobby. He carefully opens them for me.

“Helen and Jeff have never seen this,” he tells me.

They haven’t?

“No.”

The wallet is covered in dust, still, and faintly redolent of that World Trade Center tang, a scent once so powerful that New Yorkers could smell it in their eyes. He starts pulling out a 26-year-old’s modest possessions: a Pennsylvania driver’s license, a Visa card, some kind of work or building ID, a library card. The wallet still contains $13 in cash, but the money is disintegrating, almost completely rotted away.

“The only thing I do is 9/11 stuff,” Bob Sr. says. “My whole basis of everything revolves around the day.”

This is not, it should be said, anything like what Helen does with her days. A two-decade investigation into 9/11 was not part of her retirement plan. In one of our earliest conversations, she specifically told me that she’d walk across the United States to not discover some of the things that Bob Sr. has learned. So as he and I sit here, inspecting a wallet that she’s never seen, I ask: Doesn’t all this searching, this interrogating, have unhealthy consequences for his marriage?

He readily admits that it does: “We’d socialize and she’d catch me saying stuff, and she would go nuts. She’d say, ‘Do not talk about 9/11.’ But then someone would come up to me and say, ‘Can I ask you about it?’ And I’d start talking. Then she’d find out about it. She’d get so upset.” They now tend to socialize separately. “I will talk 9/11 with anyone I see, if they want to talk about it,” he says. “And I think that’s why I don’t have many friends. They’re afraid I’m going to talk about it.”

It may be hard to imagine why anyone would want to spend so much time immersed in the story, sensations, and forensics of his son’s death. But for Bob Sr., that’s precisely the point: to keep the grief close. “I don’t want to get away from it,” he tells me. He wants to stay at the top of the mountain. This is how he spends time in Bobby’s company—by solving this crime, by exposing the truth about the abuses of American empire. “Doing what I’m doing, that’s really helped me, because I think of him every day. Every time I talk, I talk about Bobby.”

Bobby’s wallet is still covered in dust, and faintly redolent of the World Trade Center tang that hung over New York in the fall of 2001. (Danna Singer)

He’s aware that there are other ways to spend time with Bobby that wouldn’t be quite so excruciating. He could read his diaries, for example. To this day, he feels terrible that he handed that last one off to Jen. He felt so guilty about it for so long that he was still mentioning it in interviews in 2011. A British newspaper referred to it as “the journal episode.”

“I’m just not that big on the journals,” he tells me. “They don’t mean that much to me.”

So what means the most to you? I ask.

“That he was murdered,” he says.

On the morning of September 11, Helen, the most stoic of the McIlvaines, was the only one who panicked. Jeff knew that his brother didn’t work in the World Trade Center. Bob Sr., who was teaching that day in the adolescent psych unit of a local hospital, treated the macabre, smoldering towers like a news event and, along with everyone else, began watching the coverage on TV.

Helen, however, took one look at the television and needed to sit down. She knew it seemed ridiculous, superstitious, but she’d spoken with Bobby the night before and forgotten to end the conversation the way she always did: “Be careful.” She’d later say those words to his casket as it was lowered into his grave.

By midday, when no one had heard from Bobby, everyone in the family felt like Helen. Yes, the cell towers were down in Lower Manhattan and the phones were working only sporadically, but surely Bobby, who could spend hours on the phone talking with his parents (How do you guys find so much to talk about? his friends always asked), would have found a way to call, and Jen had heard nothing, which really made no sense. Bobby had just asked her father for permission to marry her two days earlier.

In the late afternoon, Andre, his close friend and old suitemate, finally reached a woman at Merrill Lynch who awkwardly told him that Bobby and a colleague had been scheduled to attend a conference at Windows on the World that morning and no one had heard from them since. Andre called the McIlvaines.

“That first night was probably worse than after we found out for sure that he’d died,” Jeff says, “because we had no idea what had happened. I couldn’t get that out of my head—that he was in that, you know?”

They slept in the den, the three of them. Jen stayed in her own living room that night, glued to the TV.

On Wednesday morning, Jeff and Bob Sr. were too agitated to remain in Oreland. They took a train to New York and made a fruitless tour of the city’s triage centers. Nothing. My brother stood on line at a missing-persons center; Andre ran a command center out of his apartment, working the phones and every lead he had; Jeff checked every website he could find. Refresh, refresh, refresh.

Jen sat and waited.

Bob Sr. spent Wednesday night in my brother and Bobby’s apartment, sleeping in his son’s bed.

The next day, Andre got a call from the NYPD, this time with grim news: Everyone needed to go immediately to the armory on Lexington Avenue.

Once again, Andre had to tell the McIlvaines. Helen calmly did as she was told. She treated these instructions as if she were an astronaut, doing whatever step came next if one of the modules of the International Space Station caught on fire.

The armory was a seething mass of the desperate. Hundreds of families were lined up outside, carrying posters with faces of their loved ones. A minister escorted my brother, Jen, Andre, and the McIlvaine family inside. Helen gave him Bobby’s name. A police officer approached her from across the room. “Are you the mother?”

Much of what followed was a blur. They were shown to a private room where grief counselors descended on them. Then something unusual happened: Rudy Giuliani walked in.

The mayor was unaccompanied. Without aides, without cameras, nothing. He looked genuinely relieved to have a family to console at that moment, with so many bereaved New Yorkers still twisting in limbo, posting flyers with pictures of the missing on lampposts, chain-link fences, hospital walls.

Giuliani embraced everyone. Then he took a seat opposite the McIlvaines. He uttered just five words: “Tell me about your son.”

After Bobby died, Helen McIlvaine begged his girlfriend, Jen, to share his final diary with the family, to no avail. (Danna Singer)

If Bob Sr. chose to feed his grief, Helen chose to starve hers. She spoke about it with her limping group, because they understood. But she was determined not to be, as she puts it, “At-Least-I’m-Not-Helen.” Living with the impossible was hard enough. But to be in the position of having to console others about her misfortune, or to manage their discomfort, or, worst of all, to smile politely through their pity—that was more than she could bear. Helen can still rattle off a list of all the well-meaning things people said that stung.

No parent should bury a child.

You will never be the same.

I was with my children last night and realized you’ll never have something like that again.

Did people not realize that they were building a moat, not a bridge, when they said such things? That they were drawing attention to the pretty castles they lived in, their walls still lined with luck?

That first year was brutal. Once, while she was sitting in a diner with some friends, one of them started going on and on about the musical talents of her son. “I wanted to scream,” Helen says. “I had to get out. I couldn’t listen to somebody else talk about their child. For years. I couldn’t.”

The second year wasn’t much better. She tried going to Italy on a tour with a friend. She says she came across as cold, distant, strange. She dreaded the most innocuous question: Have any kids?

Work helped. Her students needed her, and her colleagues were great. “Except I didn’t want their help, because it was too soon,” Helen says. “So afterwards, a few years down the road, I looked like I’d healed. And it wasn’t true. I wanted to talk about it sometimes. But I had to find other means to do it, because I’d kind of shut that door.”

I can’t decide whether this corresponds with the Helen I’ve come to know. Maybe?

Helen: She wears little or no makeup. She is exceedingly good-humored. She is always brimming with questions about your life. She’s the kind of person who goes along with any plan and can spend 20 minutes in a drugstore trying on funny pairs of reading glasses with you.

We actually did this together in Florida a couple of years ago. We both happened to be visiting my mom.

So the reserve she’s describing is a little foreign to me. “I have a weird personality,” she tells me. “I can cry over a blouse that I ruined in the laundry and then be stoic for something …” She trails off, but I believe the word she’s looking for is big.

But with Bobby … ! Bobby brought out her more emotional self, because he was such a sensitive kid. “Once, after about half an hour of listening to his woe-is-me girlfriend stories,” she tells me, “I said to him, ‘You do understand I’ve been married to Dad for almost 30 years and I’ve never given him this much thought, right?’ ” But of course she loved every minute of it.

The last time she saw Bobby was two nights before he died. Not an hour before, he had asked Jen’s father for permission to marry her; now the two families were having dinner at a restaurant in Lambertville, New Jersey, where Jen had an apartment. Helen took one look at her son and saw that his forehead was still shimmering with sweat. She reached under the table to find his hand. He locked his pinkie with hers. They stayed that way until the food came.

Around the tenth anniversary of September 11, Helen realized that she was not all right. She’d lost a child, so maybe this was what her new life was destined to be: not all right. But she wasn’t convinced. Somewhere along the way, her toughness, her steadfast refusal to be a victim—it had backfired. “I found myself being petty. And bickering. I found myself being too gossipy sometimes.”

I’ve never heard Helen say a cross word about anyone. Even when I mention that I’ll soon be seeing Jen, she reacts with anxiety, not bitterness. She doesn’t want to open old wounds. They were both suffering terribly back then; neither was her finest self.

Okay, but what if she lends me the diary? I ask.

“Oh my God. Would you marry me?”

But this is today’s Helen. The Helen of a decade ago decided she wasn’t who she wanted to be. Her therapy had stalled. She had trouble managing her anger. “My life just feels so amazingly off kilter,” she wrote in a reminiscence marking the tenth anniversary.

She’d kept too much in, and she was fermenting in her own brine.

Not long after, she started seeing a different therapist. This one was spiritual. That new perspective changed everything. “She really believes that we don’t see all.”

Even before Bobby died, Helen was a big fan of self-help books. But after September 11, she bought them by the dozen, hoovering up everything she could about loss. She found Elisabeth Kübler-Ross indispensable—not so much for her writing about the five stages of grief, though that was fine, but for her writing about life after death.

Kübler-Ross once considered a belief in the afterlife a form of denial. But starting in the mid-1970s, she had a change of heart, compiling thousands of testimonies from those who’d had near-death experiences in order to show that our souls outlast us.

“I looked at life-after-death books, but they were too faith-based,” Helen says. “I wanted to believe what I was taught in my Catholic upbringing. But what I liked about Kübler-Ross is that she had a science background.”

It was precisely because she was a scientist, of course, that Kübler-Ross’s fellow physicians were so dismayed by this strange turn in her interests. They thought it kooky and unrigorous, a stain on her legacy. I tell this to Helen. She laughs. “Bet they didn’t sell millions of books.”

Kübler-Ross used a hokey but intuitive metaphor to describe the body and soul: Our bodies are our mortal coils, our “cocoons”; when we die, we shudder them off and our souls—our “butterflies”—are released into the wilds of the universe. Helen cherished this idea. It was a notion that could redeem a violently, capriciously abbreviated life. “One day I actually thought, What if there’s a hierarchy and Bobby’s a part of that, and he just came down as a human for a bit? ”

She and Bob Sr. began watching Supernatural and Buffy the Vampire Slayer, shows they’d never have imagined watching before.

And here in this world, Helen came to understand that there was nothing to be gained by bottling up her grief. At age 60, she took up running, not only because it felt good but because it allowed her to cry. She started expressing herself more. She noticed one day that the tempest of grievances she unloosed in her therapist’s office were all so trivial, so petty, so pointless. What was she getting so worked up about?

Now she’s doing the very thing the self-help books tell you to do: letting stuff go. She tells me about a friend whose towering self-involvement used to infuriate her. But recently, she chatted with her on the phone and decided just to enjoy the good bits.

Wow, I say. What makes you so forgiving?

“It wasn’t serving me well.”

You know what radical acceptance is? Living with a husband who has dedicated his life to spreading the word that the United States deliberately orchestrated the collapse of the World Trade Center and then conspired to cover it up. Forget all the chipper advice columns about how to get along with your Trump-loving uncle at Thanksgiving. How do you get on in your decades-long marriage after your son has died and your spouse wakes up each morning livid as an open wound and determined to expose the truth?

Helen would be lying if she said this didn’t cause friction.

“There were many moments where I was like, Oh, please,” she says. She was perfectly open to some of the things Bob Sr. said. “But a lot of it was emotional, and a lot of it, I couldn’t trace to find out myself, and I’m not a go-on-a-website kind of person. I didn’t want to burst his bubble by constantly saying, ‘Well, did you check, is it a valid website?’ ”

Perhaps the more challenging issue, the nuts-and-bolts-of-living-in-a-marriage issue, was daily conversation. Bob Sr.’s single-minded focus meant that any conversation could segue without warning into September 11. She’d come downstairs and tell him she was thinking about buying a new sweater; he’d reply by asking if she knew that the government had lied about the actual date of Osama bin Laden’s death.

“So has it gotten in the way?” she asks. “Yeah, many times. We’d be going somewhere, and I’d say to Bob, ‘You cannot talk about 9/11.’ And he’d say, ‘Well, they ask me about it.’ I fell for that for the first 99 times until my therapist said, ‘That’s not good enough.’ When we’re out at a social event, we’re out. I don’t want to be always victim, victim, victim.”

How do you handle it now, I ask, if you feel another soliloquy coming on?

“Now I say, ‘Bob, you have the I-won’t-talk-about-anything-else-but-9/11 look on your face.’ We’ve come to a point where we can actually joke about it.”

Helen wants me to understand: There are some aspects of Bob Sr.’s obsessions that she doesn’t merely tolerate; she actively supports them. Two years ago, she listened to a presentation by Architects & Engineers for 9/11 Truth and found it persuasive. It’s the other parts of his narrative, which keep evolving, that leave her at loose ends. “If I were him, I’d just stick with the buildings,” she says. I ask if she’s up-to-date on his latest theory, involving Japanese gold. She shakes her head. “I don’t even hear it,” she says. “I’m defending the person, not the view.”

Long ago, Helen realized that “9/11 truth,” as Bob Sr. likes to call it, had sunk its hooks into her husband, and she’s never thought it her place to pry them loose. “I’m very protective of him,” she says. “If he decided to be a male stripper in an old people’s home, it’s okay with me. He has to be who he has to be, because damn it, this happened, you know? And if that’s going to give him comfort—”

She interrupts herself, gives an embarrassed smile. “Get that visualization out of your head.”

Helen would never dream of abandoning this dear man. He was Bobby’s Little League coach. The one who organized races around the house when the kids were little, using a piece of tape for the finish line. Bob Sr. was her only suitor who ever suggested they play sports together—the others thought that was strictly for the fellas.

And now he’s the only other person in the world who understands what it feels like to have raised Bobby McIlvaine and lost him.

She walks me over to the wall with a giant framed poster she had custom-made for her husband five years ago. It’s a periodic table of Bob Sr., basically—dozens of images of him, all tidily laid out in a grid. Bob Sr. talking to Rosie O’Donnell. Bob Sr. giving an interview on French television. Bob Sr. speaking at a forum about the 9/11 Commission report, captured on C-SPAN. “I gave him that on his 70th birthday,” she says. She went online, punched his name into Google, and voilà. A hero’s gallery. “I love looking at it.” He’s become the superstar, strangely, that his son never had the chance to be.

Bob Sr.’s crusade may look to the outside world like madness. Helen sees it as an act of love. “He’s almost going to war for his son,” she tells me. “He’s being a father in the best way he knows how. How can I not allow that?”

Most theories of grief, particularly the ones involving stages, are more literary than literal. People don’t mourn sequentially, and they certainly don’t mourn logically. But there’s an aspect of one of those models I keep circling back to whenever I think of the McIlvaines. It’s the “yearning and searching” stage of grief, first described by the British psychiatrists Colin Murray Parkes and John Bowlby in the 1960s. “When searching,” Parkes writes, “the bereaved person feels and acts as if the lost person were recoverable, although he knows intellectually that this is not so.”

How Bob Sr. searches is obvious. But it occurs to me, after speaking with Helen, that perhaps her years-long preoccupation with Bobby’s final diary is her equivalent of Bob Sr.’s obsessions. “Yes!” she says when I tentatively raise the possibility. “Yes, yes. It’s ‘If I can’t have this, then I’ll have that.’ ”

Yet here’s what’s curious. Helen has two earlier diaries of Bobby’s. She also has stacks of legal pads of his writing, many with diarylike entries in them. But she’s barely dipped into them at all.

One reason is practical: They’re hard to decipher. Bobby’s handwriting is neat but small and slightly peculiar. Another is instinctive: For a long time, Helen feared that reading them would be a violation of a sacred boundary, “like going into his room without knocking.” Yet another is how much pain it causes her. “I tried today again,” she wrote in another reminiscence on the tenth anniversary of Bobby’s death. “I thought, ‘If I don’t tackle these before I’m dead, who will?’ ” She lasted 10 minutes. Bob Sr. has never looked at them at all.

“But somewhere I did find the words Life loves on,” Helen tells me.

I’ve been meaning to ask her about this, because I’m now reading Bobby’s diaries and legal pads, and I can’t find the phrase anywhere. Does she still not know where it came from?

She doesn’t. She thought he’d written it about a close family friend who’d died, but she was wrong. I tell her I’ll keep looking.

I take one of the two diaries back to my hotel that night. And I realize, as I’m reading, that there’s probably another reason Helen never dug too deep into either one of them. They’re from his freshman and sophomore years of college, when he was still a proto-person, still essentially a kid. He was clearly older when he scribbled in some of those legal pads, but they’re chaotic and undated. Only the diaries feel manageable and chronological, and they read like the musings of a boy in his late teens—florid, soulful, a little mushy. He doesn’t sound at all like the Bobby of September 11, 2001, who was almost 27 years old.

Yet I still get a kick out of them, and those chaotic legal pads, especially the parts about writing. Even at 19, Bobby was trying to find his voice, sometimes shifting from the first person to the third to see if he liked it better (and then saying so in the margins—third-person experiment!). They’re filled with exhortations and reminders to himself: I need to stay true to my voice, whatever it is. I write horrible stuff in other people’s voices. And my favorite: Hope is even more important than talent.

There’s also tons of beautiful stuff about his family. This may be what astonishes me most, given that Bobby was in late adolescence, a time when most kids morph into ruthless family vivisectionists. Yet he devotes page after page to how much he loves and admires Helen, Bob Sr., and Jeff. In May 1995, for instance, he wrote about discovering that Bob Sr.’s father had been an alcoholic. Bobby had had no inkling. He made sure that he didn’t give me the bullshit, Bobby wrote of his own father.

He made sure I had something better, and only asked that I do my best. That’s all he asked. That’s all my mom asked. And I want so badly to make them proud, even more proud than they already are. They deserve the pride. They deserve more than I can ever give them, and yet they will never ask for more than me. I love them so much.

You can hardly blame Helen for wanting to hear what he had to say once he’d become a young man.

Jen Middleton, Bobby’s soon-to-be fiancée when he died, has not spoken to the McIlvaines in nearly two decades. (Danna Singer)

Jen Cobb, now Middleton, wears her hair long, rather than in her old pixie cut, but her style and demeanor remain the same. She is still animated, still gracious, still beautiful to look at; when I walk up to her door in Washington, D.C., she greets me with a long hug. There are rescue dogs, there are sunlit rooms, there is a kitchen straight from a Nancy Meyers film. (I half-expect Meryl Streep to come gliding up with a tray of unbaked croissants.)

Jen has made for herself what is, to all outward appearances, a lovely life. But she had to assemble that life brick by brick, and she works hard to keep the joints from coming apart.

When I spoke briefly with Helen about Jen, she made an astute observation: Jen came from a family with lots of money but little love, while the McIlvaines had lots of love but little money. Jen says that yes, that’s partly true, though her mother was a loving soul; she just didn’t see enough of Jen’s life. Susan E. Cobb died on April 20, 2001, less than five months before Bobby did, of a cancer that spread slowly, then fast.

Which is to say: On September 11, Jen was already a husk of herself.

Jen’s father, her remaining parent, was highly successful but only narrowly rational, a bully and a screamer. This had predictable consequences in her romantic life: Jen always demanded complete control. She was done being bossed around.

Then along came Bobby, asking for more vulnerability and a shared say in both of their lives. Somehow, she trusted him. They first met a couple of years earlier, at the PR firm Burson-Marsteller, and around the office, he was known as the good guy who made everyone feel important. The inveterate romantic, he made her feel important, asking question after question about her family, writing her love notes for no reason. For her 27th birthday, on December 6, 2000, he asked my brother to scram and rearranged the furniture in their apartment to turn it into a restaurant, where he cooked her a three-course meal.

Jen would later learn that the dinner was a dry run for a proposal. She put a hold on the Ritz-Carlton in Philadelphia for October 20, 2002.

When her mother died, Jen could barely function. Her mother was the one who’d protected her from her father’s storms of rage; she was the one who’d chatted with her late at night after Jen had spent a boisterous evening out with girlfriends. Yet Bobby remained steadfastly by her side, making the intolerable seem survivable. He would be with her every step of the way. She would still be loved.

Then Bobby died. The world became a mean, untrustworthy place. “There was not one thing I could control,” she says. “Not one thing at all.”

Jen keeps a steamer trunk of Bobby’s things in the attic above her garage. In anticipation of my arrival, she’s brought his belongings down in a turquoise canvas bag. She starts sifting through it. “There’s the diary,” she says, pointing. “The thing that caused all that trouble.”

Bobby’s other two diaries were hundreds of pages long. This one, I will shortly discover, had only 17 pages of entries. All that fuss over what was barely a pamphlet.

Then again, they’re a dense 17 pages.

Jen has no memory of getting the diary from Bob Sr. But she does remember reading it immediately, voraciously, and returning to it night after night. She remembers, too, Helen asking for it back, though the tensions didn’t start immediately. At first, everything was fine. Helen even gave her the engagement ring Bobby had bought for her. It was awkward and unceremonious—“He’d have wanted you to have this”—but Jen was grateful, and she wore it everywhere for months.

At some point, though, Helen started getting more vocal about that diary. “In hindsight, I don’t know what my problem was,” Jen says. “I was probably in pain and also grasping for control and wanted something of his that no one else had. It seems kind of ridiculous now. It’s just how I felt at the time—that it was mine and I wanted it to be mine and I didn’t want anyone else to have it. It probably felt like it was all I had left.”

Jen and Bobby in 2001; the ring Bobby planned to propose to Jen with. (Danna Singer; original photo courtesy of Jen Middleton)

What I had to understand about those awful, leaden days, Jen says, is that she wasn’t just depressed. She was wretched—“double grieving,” as she puts it, for her mother and then her future husband. When her mother and Bobby died in rapid succession, she fell into a deep depression, though she did her valiant best to conceal it. She still has anxiety attacks to this day. “When something upsets me,” she says, “it goes downhill fast.”

Which all makes perfect sense, I say. The only thing I can’t understand is why she refused to transcribe the nonpersonal parts of Bobby’s diary for Helen. That’s not the act of a depressed person or a grieving person. That’s the act of someone who’s angry. She must have been upset with Helen for some reason, no?

Here Jen pauses. Then she starts measuring her words. “This isn’t a knock on Helen at all,” she says. “I’m so beyond it. But at the time I remember resenting that she said, ‘You’re going to be okay, because you’re young.’ ” Jen recognized that there was a difference between their two losses. “But it felt like she was saying my grief was less important than hers. I know it was coming from a place of extreme pain, but I remember thinking, How does she know I’m going to be okay? What if I’m not okay? What if I have a different kind of not-okay? ”

One thing you don’t say to a person who’s mourning, Jen tells me, is that they’re going to be okay. She might have added: Nor do you say that to a depressed person. Depression does that—convinces you that you are never going to be okay.

“Now I get it,” she says. Because of course Helen was right. Jen did find love again. But at the time, she was convinced that she wouldn’t. She considered freezing her eggs. Once, in a moment of near-hallucinatory panic, she wondered if she could get impregnated with Bobby’s DNA from strands of hair he’d left in a comb.

“It just would’ve come out better if she’d said: ‘This is really sucky for you. And I’m sorry. Chances are, you’ll meet somebody.’ I guess there was just a nicer way to say it,” she says. “However she said it set me off. Just because of my own personal shit.”

I ask if it’s possible that Helen did say those things, though she may have said a few artless things too. Maybe Jen missed them—or heard insults that weren’t necessarily intended as such—because she’d grown up in a house that required an extra set of threat detectors, given her father’s volatility.

“A hundred percent,” she says. “It was probably me regressing into a little, you know, tantruming child. I was mad at the world. Of course she didn’t intend to hurt me. She’s the nicest person.”

She and Helen are more similar than either of them realizes. Like Helen, Jen believed, at the time, in hiding her grief. Like Helen, she today takes refuge in the idea that Bobby’s soul is rattling about somewhere. “I’m really showing my woo-woo side here,” she says, “but I think that he’ll be back, and I’ll be back, and we’ll finish our unfinished business.”

And like Helen, she has learned to let a lot of things go. That’s one of the most ruthless lessons trauma teaches you: You are not in charge. All you can control is your reaction to whatever grenades the demented universe rolls in your path. Beginning with whether you get out of bed. “And that’s where I started my day, literally,” she says. For years.

Today, Jen is choosing to hand me Bobby’s diary as I’m walking out the door and heading back to New York. She has zero reservations about it. She says she’d like to have the original copy back, but there’s no rush; the McIlvaines are free to read all of it, free to make as many photocopies as they’d like.

“I would have done it years ago,” she tells me. “I think about them all the time.”

Before I leave, I ask if she remembers where the phrase Life loves on comes from. She looks at me blankly. “I don’t even remember him saying that. Is it in a book that he liked or something?” Tried that, I say. Searched Google Books. Nope. “Or was it a hymn?” Hymns aren’t my strong suit, but I don’t think so. I tell her that the McIlvaines are certain Bobby wrote it somewhere, but never mind, this is not her problem. I’ll keep looking.

Memories of traumatic experiences are a curious thing. Some are vivid; some are pale; pretty much all of them have been emended in some way, great or small. There seems to be no rhyme or reason to our curated reels. We remember the trivial and forget the exceptional. Our minds truly have minds of their own.

Jeff, for instance, remembers that Jen stayed at his parents’ house for half a year after Bobby died, while Helen says it was one week, and Jen thinks it was probably two months.

Or here’s another: Jen remembers that Jeff gallantly slept in Bobby’s childhood bedroom while she stayed with them, so that she wouldn’t have to be traumatized by waking up to all of Bobby’s things, while Jeff remembers her sleeping in Bobby’s bedroom, and bravely waking up each day to all of Bobby’s things.

“I knew that if this ruined my life, his whole life was worthless,” Jeff McIlvaine says. “I wanted to work very hard to make sure that I had a good life.” (Danna Singer)

And strangest of all: Though no one can remember where Life loves on came from, everyone—and I do mean everyone (Jen, Jeff, Bob Sr., and Helen)—once knew.

It’s from Jen’s eulogy. Which she based on Bobby’s diary. The one she kept for 20 years.

“This past week I have been searching for some sort of comfort to get me through the shock of losing the love of my life,” she told the mourners at Queen of Peace Church. “I came across one of Bob’s journals and as I opened it, I said to myself, ‘Please let there be something in here that will comfort me.’ ” Then she described finding this passage, which Bobby had written as her mother was dying. She read it aloud.

It is OK for people to die. It hurts, and it is a deep loss, but it is OK. Life loves on. Do not fear for those who are dying. Be kind to them. And care for them.

“Life loves on,” she repeated to the crowd. “After I read this, I vowed that very instant to love on in my life, just as I had made a promise to my mom to never let her be forgotten. It was a way that I could extend a life cut short.”

The only reason I know this is because my brother found a copy of Jen’s eulogy. Jen had tossed hers out. She is not, as she says, a saver.

Somehow she’d completely forgotten those words, as well as their provenance. And the McIlvaines had forgotten where they came from, too, even though Helen wears them in an engraved bracelet and Bob Sr. enshrined them on his skin.

Then I remembered what Helen told me about Jen: She became a nonperson to me. She kept the words. But not Jen. She buried her future daughter-in-law too that year, just as she did her son.

Helen recently told me a story about a long weekend she’d spent with Jen, maybe 10 days before Bobby died. The whole family was vacationing in Cape May. She, Bobby, and Jen were sitting on the beach, staring at the waves, with Bobby in the middle. It was a moment of gentle bliss. Helen turned ever so slightly toward Bobby to run her hand through his hair. But at that exact same moment, that very second, Bobby turned to do the same to Jen.

It was then that Helen realized Bobby wasn’t hers anymore. “I said to myself, You gotta go take a walk and look at the real estate on the beach,” she told me.

In Bobby’s early diaries, the McIlvaine family may show up everywhere. But not in this diary. This diary is primarily about two things. And one of them is Jen.

February 18, 2001: I love her, deeply. We communicate so well. We resolve splits between us so well. And all of this means a lot.

April 11, 2001: I miss Jen. “Big” part of my life, or descriptions of how much she means to me do not suffice.

April 22, 2001 (two days after jen’s mother died): I am so sorry, Jen. So sorry for your hurt. I know it is hard. I’ll be here by your side—here to love you, to listen to you, to hold you when you need to cry.

It’s no wonder Jen didn’t want to part with this diary. Or that she read it every night.

Helen recognized this immediately. I sent her a couple of xeroxed copies after I returned to New York.

“The Jen piece was huge to me,” she says, when we have a chance to talk. “I thought of this in the middle of the night: She loses this guy that she loves—and most importantly, who loves her. Now, where is the proof that he loves her? I mean, okay, the mother gives her the ring. That’s good. But there are these wonderful words: I love her deeply.” She marvels. “I never thought about that. Never. That she needed that, that validation.”

She also recognizes what the diary is missing. “He didn’t say, I love my parents too. He said, I love her deeply.” Bobby was all grown up.

Helen now wonders about her own behavior in those awful months. She tried to show Jen affection. But she’d only had sons. She didn’t speak daughter. And that reserve she was describing to me earlier, the reserve I didn’t believe she had—it was very real. “What happens is, I have intentions sometimes and forget to say the words,” she says. “She had to guess what was in my head.”

At any rate, Helen is now clear on one very important point. “It would have been beyond Jen’s ability, even if she was in a good mood, to say, ‘Okay, here, I’m giving it back.’ I really would have had to give her at least pieces of that, somehow. That wasn’t for me to own. I really mean that.”

For years, Jen had been painted as a villain for holding on to this diary. Yet there never would have been a dispute if she had already been Bobby’s wife, or perhaps even his official fiancée. But Jen was suspended between worlds, without influence or status. “It must have felt horrible,” Helen says.

The final entry in Bobby’s diary is dated September 6, 2001. It fills the whole page. When I first read it, I was disoriented. Then I realized what it was. “I feel completely unprepared. Should I rehearse?” it begins.

It should go something like this: Do you have a few minutes to talk? First, I’d like to say that it has been a pleasure—or maybe a great experience—or do I mention Jen first? Or, I have developed a very strong relationship with Jen, and along the way it has been great to spend time in Michigan … OR … yes—I’ve had the chance to grow close to Jen, and after a lot of very serious thought, and after talking to her too, I felt that it is time to make a commitment to her. OR—after a good deal of serious thought … AND … out of respect for you as head of the family …

What I was reading was a script. Filled with fits and starts, but eventually he got there. Bobby was struggling to find the words to say to Jen’s father, whom he’d see on September 9, to ask for her hand.

At some point, not long after Jen gave me Bobby’s diary, I sent a note to my editor, telling him that I had found, at long last, the elusive Life loves on. I took a photo of the passage and sent it to him.

Amazing, he texted.

But then, three pulsing dots in a bubble. He was still typing.

Except … I think it is (sort of) a misapprehension. Look how he writes his I’s in other words. I think it says “Life **lives** on.” But hard to say for sure …

It wasn’t hard to say. He was right. I went through the whole diary again. On just the page before, Bobby had written, I lived too long without thinking of “the markets” to suddenly care. But it looks like “I loved too long …” His I ’s look like backwards J ’s, which can be mistaken for O’s, while his real O’s stand alone, like baby moons.

I texted Jen the same photograph I sent my editor. At first, she didn’t see it. Then she did. Her initial reaction was the same as mine: anxiety, despair in the form of an expletive. Then:

Still makes me smile
Me: What does?
Jen: That the people close to him saw and felt what they needed to. And that’s ok. You know?

I did. The phrase certainly sounded like something Bobby could have said. It was very Yoda, and Bobby was definitely very Yoda, spouting his little aphorisms about the drives of the human heart. To me, it was the difference between the spirit of the law and the letter of the law, or maybe what we do when we intensify the color of an image on our iPhone. We’re not trying to create a fake; we’re trying to align the image with the one that already lives in our memory.

We are always inventing and reinventing the dead.

You could make a case, weirdly, that Jen’s withholding of the diary for all these years turned out to be a blessing. If she’d given it to Helen, it’s possible Helen would have tucked it away in her safe for 10 years and barely read it, just as she did the other two diaries. Or maybe she’d have read it, but she wouldn’t have misread it.

Instead, Jen misread it, formed a eulogy around it, and handed the McIlvaine family an organizing motto for their grief for 20 years.

I still debated not telling the McIlvaines. I mean, the bracelet, the tattoo. But in a phone conversation with Helen soon after, I sensed an opening. I mentioned that I wasn’t sure I was going to write about Life loves on. She quickly intuited that something was amiss. “Because it was from somebody else?” she asked.

Kind of, I said. And I explained.

Helen was fine with it. She sees the unlikely beauty of this misunderstanding, even how it was a gift. But she holds out the possibility that the phrase still lurks somewhere. She remembers it as Life truly loves on, for one thing. And it’s possible that I could have missed it in the hundreds of pages of Bobby’s first two diaries. There are probably some missing diaries, too—why did he stop keeping them in 1995, only to resume in 2001?

So really, who’s to say?

In Bobby’s final diary entry, a few days before 9/11, he was working
out how he would ask Jen’s father for permission to marry her. (Jens Mortensen for The Atlantic)

Life lives on, Life loves on—to me, it’s irrelevant. There are far more beautiful observations in the recovered diary than that one, and they’re prescient, eerie—much more germane to the McIlvaines’ story once Bobby was gone.

Because the other thing his diary is about, the second thing, is grief.

In this way, the diary isn’t just a time capsule. It’s a crystal ball. Through an extraordinary twist of fate, Bobby spent his final few months thinking about what it meant to live with loss. He saw, through Jen, that it could render you angry, irritable, skinless. He saw that grief could utterly consume. He wondered what the utility of all this sadness was, all this suffering. Why do we have to hurt so badly? he wrote. Is that the way the person we lost would have wanted it to be?

At one point, he guiltily wished that Jen would just make a choice to seize control of the things she could.

Yet somewhere amid all the passages of exasperation and dread—and many of them are quite detailed—Bobby comes to a much larger realization. It’s an epiphany, I’m guessing, that made it possible for him to stick with his plan to ask Jen’s father for permission to marry her, though he seriously questioned during those months whether she was ready. The date was August 20, 2001.

There are people that need me. And that, in itself, is life. There are people I do not know yet that need me. That is life.

To me, that is the most profound quote from the recovered diary. That is Bobby as Yoda. That is Bobby at his very finest, his most humane, his most mature. He understood that our commitments to one another are what we’re here for—and that, in itself, is life. Even when those commitments are hard. Even when they cause us pain.

One hesitates to say this. But if there was any path forward for the McIlvaine family, it was probably going to be through Jeff. Helen was careful never to burden him with expectations about marriage or kids—“You cannot put anything on the other child,” she tells me—and he appreciated that. But it was thanks to Jeff, I think, that Bob Sr. and Helen started to muddle their way out of the dark. There were people they did not know yet who needed them. Among those people were their four grandbabies. The oldest one is named Bobby.

At 22, Jeff had a profound insight. “I remember thinking on that first day: I can’t let this ruin me. ’Cause then what would Bobby think? Imagine if he knew that my parents and his brother were never able to recover. Imagine how bad that would make him feel.”

He was reflexively answering the very question Bobby had asked as he watched Jen struggle with her grief: Why do we have to hurt so badly? Is that the way the person we lost would have wanted it to be? Jeff had a very clear answer: No. He had too much of his own life left to go. “I knew that if this ruined my life, his whole life was worthless,” he says. “I wanted to work very hard to make sure that I had a good life.”

It was so hard at first. “I remember I felt a responsibility to not die, which is a weird thing,” he tells me. At the same time, he felt guilty for being the child who didn’t die, thinking often of the dream sequence in Stand by Me when the father snarls “It should have been you” to his surviving son. He told no one at his first real job that his brother had died on September 11, because too many people were eager to share their own stupid stories about that day, always with happy endings. This delayed his ability to grieve for years.

But eventually, he built a rich, fulfilling life. He married a woman who could not only subdue his pain but enter an entire grieving ecosystem. He had four kids—four! two boys, two girls—and oh, the relief of not having to focus on himself!

I ask if he would have had that many kids if Bobby hadn’t—

“No. I don’t think I would have.” Jeff lost his only sibling. He never wants any child of his to be in that position, should lightning ever restrike. “When you go through something like this,” he says, “you realize that family—it’s the only thing.”

Those kids are now at the center of the McIlvaines’ lives—even Bob Sr., who has chosen a path of daily suffering. As our conversation was winding down, he said something that stunned me: This 20th-anniversary year—a big one for the people in his world, filled with TV interviews and conferences—may be his last of 9/11 activism.

I wasn’t sure I believed it. I remain unsure. This has been his life for 20 years. Still: Maybe it’s time for a change. “I’m sick of being angry,” he told me. “That’s the beauty of my life now. I can really separate. I truly can. To be out to lunch with Penelope …”

Penelope is his youngest granddaughter. He and Helen had lunch with her every Wednesday after preschool before the pandemic. Jeff and his wife and children rely so heavily on Bob and Helen that they recently rented an apartment five minutes from Jeff’s house, though they live less than an hour away.

Helen can’t get over having little girls in her life. They have so many opinions! She still gets depressed sometimes. She’ll have a beautiful moment, then realize that Bobby isn’t here to share it. “But then it’ll go away,” she says. “I mean, being needed—not everybody gets four grandkids.”

Yes. Being needed. That is everything.

Bobby would have been 46 this September. Jeff used to have vivid dreams about him, and man, how he loved them. They were brothers again, just talking, resuming their old rhythms and habits. But he seldom has those dreams anymore. “I haven’t seen him in 20 years, you know?”

He says he almost wishes sometimes that he could trade his current well-being for the suffering he felt 20 years ago, because Bobby was so much easier to conjure back then, the sense-memories of him still within reach. “No matter how painful September 11 was,” he explains, “I had just seen him on September 6.”

It’s the damnedest thing: The dead abandon you; then, with the passage of time, you abandon the dead.

It’s really not surprising that Jeff should have this fantasy from time to time, to trade his happiness for just one chance to see Bobby again in a warmer hue. As Bobby wrote in that last diary, suffering, or the prospect of it, is the price we’re willing to pay for the bonds we make.

Helen has found herself in the grip of a similar reverie. Recently, she was out with her limping group, and as she was looking around the table, staring in gratitude at these women who have held her up these past 20 years, a thought occurred to her. “I wondered, What if God said, ‘Okay, look, we gotta rewind here.’ Would we go through all of this again? ”

Would they be willing to relive their same lives, give birth to those same children, fall in love with them and then lose them a second time? “And I know that every single one of them would have said, emphatically, yes.”

For Helen, nothing in this world has rivaled the experience of raising her two boys. One of them, Robert George McIlvaine, died before his life truly began. But what would she have done without him, or he without her? For 26 years, she got to know this boy, to care for him, to love him. It was a privilege. It was a gift. It was a bittersweet sacrifice. And that, in itself, is life.

This article appears in the September 2021 print edition with the headline “Twenty Years Gone.”