Living Under the Shadow
This is the first of a series of articles by distinguished doctors who have learned to live with incurable disease. HENRY E. SIGERIST. M.D., one of the great medical historians of our time, was director of the Institute of the History of Medicine at Leipzig from 1925 to 1932. whence he was called to Johns Hopkins. There he remained until his retirement because of hypertension. At present Dr. Sigerist lives in Switzerland, where he is completing his eight-volume History of Medicine, of which the first volume was published in 1951 by the Oxford University Press. The article which follows is from the book When Doctors Are Patients. In subsequent issues use shall hear from Dr. Fredric Wertham, the late Dr. Abraham Myerson, and others.

by HENRY E. SIGERIST, M.D.
PHYSICIANS, as a rule, are poor patients; they know too much, and therefore never fully accept the guidance of a doctor as other sick people do. They are unable to approach their own case objectively; they are necessarily biased, and it is more difficult for them to adjust to a disease condition. If they do succeed they may have a lesson to teach. I have three incurable chronic diseases but I am still able to work with great pleasure from nine o’clock in the morning to midnight, and I enjoy life perhaps more acutely now than ever before.
It was a new experience to me when, during the last war, 1 gradually had to take illness into account and had to figure with it when organizing my daily life and planning for the future. I had enjoyed the best of health for the greater part of my life and had found the body always responsive to the many demands of an active mind. Only once had I been seriously ill, when I was stricken with pneumonia which developed into an empyema.
I was operated on; a thoracotomy was performed, an operation that was well known to the Hippocratic doctors. Locating the pus accurately is no problem to us with percussion, X rays, and exploratory puncture, but the Greeks also found the pus without the aid of our diagnostic methods. They knew the pus would ultimately break through and that the body would thus discharge the materia peccans, the faulty matter. But they also knew that this process might take a very long time — so long that the patient might succumb or at any rate be greatly weakened. Hence it was advisable to aid nature by draining the pus through an artificial opening. Where should the physician open the chest? The Hippocratic doctor reasoned that empyema was an inflammatory disease in the course of which heat was developed. The pus must be found at the point of maximum heat, and how could this be ascertained? In a very simple way: a mixture of fine clay and water was applied very rapidly to the back. Where it dried first, there was the maximum heat and there the incision was performed.
Today my pneumonia — it was an ordinary pneumococcus infection-instead of developing into empyema and keeping me in the hospital for many weeks, would be cured in a few days, and this reminds us of the fact that the historical moment at which our individual life unfolds has a strong bearing on our health and illnesses. How many of our contemporaries with diabetes, pernicious anemia, and a variety of other diseases are kept alive today who would have been lost inexorably only yesterday; and how many people today are dying young on battlefields who might have lived to a ripe old age had they been born around the middle of the last century. It would be a vain undertaking to try to decide whether it is hazard or fate or whatever we may call it that determines what happens to us beyond our individual chromosomes and behavior. To Paracelsus the stars symbolized this impact of time on our life and he spoke of ens asirale as a sphere from which disease befalls man. The fact remains that the point in time and also in space at which we live is extremely important.
Copyright 1951, by The Atlantic Monthly Company, Boston 16, Mass. All rights reserved.
And then for many years I never had any serious illness. Like everybody I had an occasional cold or upset stomach, and I am ashamed to say that I greatly enjoyed these minor ailments. It is a sad comment on our way of life that we must have a sore throat, a bronchitis, laryngitis, or gastroenteritis, in order to have a few days of real rest. An interesting essay could be written on the hygienic significance of minor ailments. By forcing us to rest they may prevent more serious illness. Of course, it would be better to break the long winter by taking a trip to the West Indies. But how could we get away in the midst of the academic year, and what professor has the money for such a trip anyway?
Bronchitis or some such disease is the cheapest way of having a vacation, and spending a week or even a few days in bed is the best rest we can have. The discomfort is nothing to speak of; we catch up with sleep and accumulate a reserve for the weeks to come, we eat little and take off a few pounds, and we have the time to read all the books that have accumulated on our desk. However, in order to enjoy the privileged position granted the sick man we must be feverish. As soon as our temperature is higher than normal we are excused from all the many duties and obligations imposed upon us by society. Tortured by gastric ulcers, a man is still expected to attend to his regular work and is often considered a nuisance because he requires a special diet, while the slightest fever makes us an object of attention and loving care. A fever makes it apparent to all that we are sick; ulcers do not.
2
THE years have gone by, and now at the age of sixty I find myself with three incurable diseases. One is a rare but not significant disease, a parapsoriasis en plaques. A textbook describes it very correctly as being characterized by “widely dispersed, well-demarcated, superficial, non-infilltrated, pink to tan patches covered with a fine adherent scale.” They do not itch or present any other subjective symptom, do not attack the face or hands, are not contagious; they come and go, disappear at times entirely, particularly during the summer months, come back and are more strongly marked in winter.
Nothing is known about the disease and there is no cure for it. It is possible to get rid of the patches temporarily with chrysarobin or, under certain conditions, with large doses of vitamin D, but they come back after a short while and the best one can do is to forget about the disease and ignore it completely. This is very easy at my age, but for young people who like to display their anatomy on beaches and are engaged in courtship such a disease, harmless as it is, could be most unpleasant, particularly as the prejudice against all skin affections is still very strong. It also reminds us that in spite of great progress achieved we still have many unsolved problems in medicine; and it makes me feel very strongly how unsatisfactory our theory of disease actually is. Is parapsoriasis en plaques more than a name? Is it really a clinical entity, a disease in its own right? Or is it merely a symptom in a larger complex, symptom of a basic pathological condition such as an allergy?
This leads me to the second disease which I have had for many years now and which has caused me more discomfort than the one just mentioned, a chronic rhinitis. It developed slowly and gradually after I had come from Europe to America. I noticed that very many Europeans develop diseases of the upper respiratory tract in America, particularly sinus troubles. The violent climate with its sudden changes of temperature, the polluted air of many of our cities, the overheated rooms in which we live during the winter, may be partly responsible for this. Having worked in a library for many years, I know what fatal effect the damp heat of a Baltimore summer followed by the dryness of an overheated building in the winter has on the leather bindings of books, and I can well imagine that the tender mucous membranes of the nose do not react in a particularly favorable way to these external factors. I was treated with penicillin when the drug was still in its experimental stages, was treated with radium, was operated on. Most treatments gave me temporary but no permanent relief. It could never be established with certainty whether the disease was due to a chronic virus infection or to an allergy.
At any rate, I have it and will in all probability keep it to the end. It is a nuisance, I cannot deny it, and many times I envied our Baltimore Negroes with wide-open noses which seemed to guarantee them perfect ventilation. The degree of comfort or discomfort I experience depends to a large extent on the weather. There is an optimum humidity which makes it possible for me to breathe quite freely. With a higher or lower degree of dampness, however, the membranes swell and cause nasal obstruction. All you can do is accept the condition and have some drugs in readiness with which you can keep the nose open when you need it most — at night, when giving a lecture, at a conference, or at some other critical moment. This too is a very minor ailment compared with my third incurable disease, which is a serious one, a killer.
Almost twenty years ago, when I joined the faculty of an American university, I intended to combine a life insurance policy with the professor’s retirement annuity, and the medical examination very unexpectedly revealed that I had a marked hypertension, with traces of albumin and a few casts in the urine, and with a slightly enlarged left ventricle. Perhaps it should not have been quite unexpected, because I know of several male members of my mother’s family who were suffering from hypertension, and several had died from cardiovascular diseases. I was overweight, moreover, was a heavy smoker, taking practically no exercise— leading anything but a hygienic life.
According to American usage I was not accepted by the life insurance company. Later I learned that Swiss companies do accept hypertensive individuals at a slightly higher premium. Quite generally I found that the attitude of the medical profession toward hypertension is different in Switzerland — and in other European countries—from that usually encountered in America. Much less fuss is being made. Statesmen, businessmen, industrialists in very responsible positions, are strongly advised to carry on with their work and not to resign; high officers of the general staff are kept in the army. They all have to make certain adjustments, to be sure, but every effort is made to impress upon them that they are not cripples, that they remain useful members of society, that hypertension is not a disease but a condition, an adaptation of the organism to certain pathological changes. As a very distinguished Swiss clinician said to me, it took a long lime to persuade the general practitioner that he should measure the blood pressure as a matter of routine, but now he must be urged not to overrate his findings. Of course, in Europe as everywhere else, physicians and patients are well aware that the condition is serious, but there is no reason to become neurotic about it.
In my own case it is difficult to tell whether the condition began as an essential hypertension which gradually caused cardiovascular lesions or whether it was the result of slowly developing arteriosclerosis. I noticed that most American colleagues I consulted were extremely secretive. When they took the pressure and you asked them what they had read they gave you a vague evasive answer which sounded either like a clark threat or like a light joke. I once spent two weeks for a general checkup in a famous hospital, had an endless number of tests made on me, and not only was I never allowed to see my case history but I also was never told what my blood pressure was, what the ophthalmological findings and the results of the various tests had been.
Of course, I found ways and means of getting hold of the case history surreptitiously, and I suppose most physician-patients in such cases do, but I strongly resented the secrecy of my colleagues, which implied either that I had never heard of the fact that man is mortal, or that they considered me a highly neurotic individual who could not be told the truth, and this I am decidedly not. The result of this secrecy was that for a number of years I didn’t consult a doctor until I found a very able young Viennese refugee physician who was absolutely frank and together with whom I made the nceessary tests in his small laboratory.
3
ALL this raises the very important question whether patients should be told the truth about their condition or not, a question which, I am sure, cannot simply be answered with “yes" or “no.”Medieval ethics had no hesitation on the subject. The purpose of man’s life was salvation, and everything had to be done to prevent a man from dying unprepared, without having confessed and received the holy sacrament of Extreme Unction. Today the commonly accepted view is that the physician should not do anything which might harm his patient, shorten his life, or even worry him unnecessarily. If a true statement about his actual condition or a prognosis might in any way be harmful, it should be withheld, particularly as the physician’s words may easily be misinterpreted at a time when radio, newspapers, popular magazines, and advertisements are pouring out half-baked information on medical subjects. This sounds very simple but is not, and here as everywhere else the doctor must know his patient.
No two individuals are the same physically or mentally, and while some demand full honest information about their conditions, others are — unconsciously— grateful for being kept in the dark. I know members of my own family whom I as a physician would deceive to the very end because they could not take the truth, while I know others who would be deeply grateful if I should tell them the whole truth, because it would make it possible for them to organize their life, whatever is left of it, in the best possible way.
Of course, we must always keep in mind that in medicine there is no Truth with a capital T, that medicine is what Celsus very aptly called it, an ars coniecturalis, an art in which you have to make guesses. There is more certainty today in our knowledge of diseases, in our diagnostics, and even in therapy than in the past, but the area of uncertainty is still very large. There is a school of physicians that strongly believes that hypertensive patients should use a saltless diet, while other schools think that salt does not affect the blood pressure in any way. And the advocates of a saltless diet are divided into two camps, those who consider the chlorine harmful and those who accuse the sodium of evil effects. Pharmaceutical firms have prepared condiments to take the place of salt some of which contain sodium but no chlorine, while others avoid sodium but have chlorine. There are plenty of experiments and statistics available in support of all of these views. Which is correct and which wrong? We do not know. The explanation may well be that patients react differently.
When we have decided to enlighten a patient about his condition we must never forget to tell him that there is always hope. Miracles do happen in medicine. My mother had a maid who had served her for nearly thirty years when in her late forties she rapidly lost weight. One of the best gynecologists in town diagnosed a cancer of the uterus and decided to make a total extirpation of the womb; but when he opened the abdomen he found a very advanced tumor and metastases, so that nothing could be done. Biopsy confirmed the diagnosis. The woman was pensioned, went back home to her village, and ut aliquid fiat she went once a week to the near-by city to have treatment with X rays. Soon thereafter she began to gain weight, and recovered so completely that she lived for almost twenty-five years, dying at a ripe old age, unfortunately during World War II while I was in America and long after her gynecologist had passed away, so that nobody thought of having an autopsy performed.
My own condition remained quite unchanged during the years preceding the war. Those were busy years during which the Johns Hopkins Institute of the History of Medicine was developed, the Bulletin of the History of Medicine and several series of monographs were founded, the American Association of the History of Medicine extended its activities — years of research, of teaching, of administrative work. Knowing that war was bound to come, I took advantage of these last years of relative peace, and went abroad every summer for extensive study tours, working in libraries and archives, or doing field work in social medicine. And at the end of every summer, before resuming academic duties, I went to see an old friend in Zurich, a distinguished heart specialist, to have a chat and to have a few tests made. The blood pressure was invariably the same, about 160/110, and after X ray, electrocardiogram, and urinalysis were found to be unchanged also I sailed back to America determined to carry on as in the past. I never felt sick or handicapped in any way.
Matters changed as a result of the war. When America became involved in the conflict our younger colleagues joined the armed forces and we, the old generation, did their work, For a number of years I had three full-time and a half a dozen part - time jobs. This was very strenuous. It meant having a seven-day working week without any break, with sleeping time reduced to a maximum of five hours. It was decidedly not the “Way of Life” usually recommended to hypertensive individuals. But then — others were dying on the battlefields, why should we not do our share on the homo front with all the risks involved?
I was able to carry on during those years of war because every summer I spent a few weeks at Saratoga Springs with immense benefit. I know that the average American doctor does not think very highly of spa treatments and considers them rather some kind of psychotherapy if not outright quackery, while in Europe mineral springs have been used with good results for the last two thousand years in the treatment of chronic diseases. I am not competent to decide what biochemical processes take place in the human body during such a treatment. Scientific balneology is still in its infancy, but research is being pushed vigorously in a number of European countries, particularly in the Soviet Union.
What I do know is that a few weeks of complete rest and relaxation, away from everything and everybody, with light exercise, walks in the enchanting landscape of northern New York State, combined with a strict reducing diet, mineral baths, massage, nasal inhalations, did wonders for me. Eatch time I reduced my weight by ten pounds, my blood pressure went down by twenty to twentyfive points and stayed down for some time. I went back to work feeling light and rejuvenated.
One point I should like to mention and stress in this connection: namely, the importance of solitude and meditation. We are social beings whose life unfolds in a closely knit society. The city dweller, men in public life, academic teachers, physicians, business people, are practically never alone. From the moment they rise in a hurry in the morning to the moment they retire at night tired and weary, they live in constant intercourse with other people. They never have any time to reflect about life, about the world, about their own doings. I think everybody should make an attempt to spend some time alone every year — if not a few weeks, then at least a few days, reassessing his life, trying to find out what was right and what wrong, making plans for the future, reviewing his scale of values. It need not be in a health resort, not even in the country. Many times have I been on a lone island, cut off from the world in the midst of Paris, London, or New York, and have experienced moments of profound solitude and great inspiration within the bare walls of a small hotel room.
4
IN 1945 when the war came to an end I woke up to the realization of the fact that from now on I would be handicapped physically. It is quite a shock, at first, when you find out that the body no longer is the willing tool of the mind, when you discover that you cannot jump up the stairs any longer as you used to do but must walk up sedately like other people. At the moment I live surrounded by hills and mountains that I would love to climb, but I know that I shall never be able to do it. But then you very soon realize that these are very minor considerations. Once past the age of fifty, almost everyone has some kind of handicap. One is hard of hearing, another has trouble with his eyes, still another suffers from arthritis; but as long as the mind is alert and functions normally, there is no reason why we should not accept our lot joyfully.
Every chronic illness presents special problems. With a cardiovascular disease you know thal you will not live to a very old age and you also know that the end may come suddenly. How many of our friends and acquaintances have been stricken all of a sudden, out of a blue sky as it seemed, in the street, at their desk, in the lecture hall, or have passed away in their sleep. Since the time left is limited, we must plan carefully so as to use it to the utmost. We must decide which part of our work we consider the most important and this we must try to carry out no matter what sacrifices it may require.
In my own case I gave up an academic position that I loved and set up my workshop in the country in a small village in Switzerland in order to write an eight-volume book that I had been preparing for many years and that war work had prevented me from beginning sooner. I felt that without this book my life’s work would remain very fragmentary and that I must give up all other activities for the sake of this one project. I was able to do it because an American university was prepared to support me and my work for a number of years. I am well aware that this is an unusually liberal and generous attitude of a university, and whatever I may achieve will to a large extent be due to this unselfish support. Most professors with my illness would have had to remain in their position and wear themselves out with teaching and endless routine without being able to complete their essential work.
I think this feeling of not having completed your work, of still having a message to deliver, of wishing to sum up thirty-five years of research and manifold experience, is not only a strong incentive but at the same time an important therapeutic factor. You organize your entire life around the project, do anything that will further it, and avoid what may be detrimental to it. An inveterate smoker, I found it very easy to give up smoking when I began writing my present book. We know of many people who kept alive until they had finished their task, and then collapsed. Marcel Proust wrote his masterpiece, AÁ la Recherche du Temps Perdu under tremendous handicaps, worked feverishly, in bed most of the time, and when he had re-created his past life and the society in which he had lived, he died.
Of course, we know of other people who died before they had completed their work, who were torn away in the midst of it. Yet we observe quite often that the desire to live to a certain date keeps patients alive. Dr. Welch after many months of illness spent in the hospital saw the end approaching, but also the fiftieth anniversary of the day when he had joined the faculty of the Johns Hopkins University. And he wanted to live long enough to see that day. He spoke about it often, and indeed it was a memorable date — half a century in a university which during that period had become one of the great cultural centers of the nation and to the greatness of which he had contributed more than anyone else. To him it was symbolic of the fact that he had completed his mission on earth. The day came and he thoroughly enjoyed the flowers and telegrams he received. Then his illness took a quick turn for the worse and he died a few weeks later.
5
AND now I have been living in the country, working on my book for over three years. I do not feel sick in any way because I am in an environment in which a man with my illness can lead a normal and full life and be as productive as before. I lead a very quiet life, move around very little physically, but feel that mentally I am embracing the globe because my book, a history of medicine from early beginnings to the present, takes me all over the world and through five thousand years of human civilization. I live surrounded by books in many languages from many lands, and each one opens up a world. At nine o’clock sharp I am at my desk and spend the whole morning writing. During the afternoon I attend to a very extensive correspondence which keeps me in touch with all corners of the world, write an occasional book review, and take care of the infinity of odds and ends connected with literary work, preparing bibliographies, collecting illustrations, reading proofs, and similar matters. After dinner until midnight sharp I read texts, and make notes and in general prepare the following morning’s writing. This schedule is by no means rigid; it may have to be modified according to the urgency of some work. I also greatly enjoy the visits of former students, of colleagues and friends who are good enough to look me up in my retreat.
Thus I feel that I am still a useful member of society, not a parasite, and that I am contributing my share to the advancement of knowledge. My adjustment was relatively easy because so far I have not had to worry about my family’s livelihood or mine, and also because I am engaged in the kind of work that thrives best in the wilderness, provided you have a good library of your own and university libraries send you books. For a biochemist, who requires laboratories for his work, or an engineer, it is more difficult to change his mode of living. But I think that everyone with hypertension can adjust in some way or other. If he cannot slow down in his accustomed occupation there is bound to be another that he may take up. It is important for us to realize that we can lead a satisfactory life on a much smaller income than we used to have. With a sharpened sense of values we soon find out that much that we thought we had to buy was quite unnecessary. The more philosophical our general outlook and attitude toward life has been, the easier our adjustment will be. Once we are getting on in age we draw from the intellectual and moral capital that we have built up during a lifetime and we reap what we have sown.
Of course, it would he absurd to think that a cardiovascular condition of twenty years duration does not present any subjective symptoms. You cannot run or carry weights without getting out of breath and feeling some oppression in the chest. But you soon learn that if you have to catch a train you must be at the station in time, that you must get a porter to carry your bag, and that it is safe to have mitroglyeerin tablets in your pocket.
So far I have not noticed any signs of impaired memory, or very few, and I think we can do something to train our memory and keep it fresh; for example, learning difficult poems by heart — a few verses every day while shaving —or engaging in the study of foreign languages. For the last fifty years I have devoted one half hour to language studies every morning, learning and practicing Greek, Sanskrit, Arabic, Russian - whichever I happened to be interested in at the moment or needed most for my work. If you learn three new words —and their use - every day, you not only train your memory but also acquire a sizable vocabulary in many longues in the course of time, and you will enjoy foreign literatures as you never would if you had to rely on translations.
Prolonged hypertension decidedly leads to certain personality changes. I used to be rather thickskinned and now have become very sensitive, irritable, impatient, getting excited at times over trifles which I should not have even noticed in the past. This can be counteracted to some extent through will power or certain mental exercises, and on some occasions one may have to take recourse to sedatives. This increased sensitiveness has its great compensations. You not only worry more but have much deeper joys. You experience music, poetry, the fine arts much more acutely than ever before. And if you have the priceless privilege of living in the country, you will find the unfolding of the seasons in their eternal rhythm, the miracle of spring, the exuberance of summer, the soft melancholy of fall, and the creative pause of winter, a constant source of elation and inspiration. You soon recognize that the blossoming of a rose is a much greater miracle than atomic energy, and certainly a greater source of happiness. I find that every handicap has its compensations. I sleep badly but this has the advantage that I see the sun rise, which I never did in the city.
Therapeutically there is very little vou can do in a case of hypertension. There are drugs that reduce the blood pressure drastically, but they do not cure the underlying disease and simply destroy the compensating mechanism. The best we can do is accept the disease as a permanent factor in our life, adjust our mode of living to it, keep our weight down, eat and drink moderately, and rest from time to time.
Rest, complete relaxation, is a very important healing factor. Formerly I spent every Sunday working because during the eight months of the academic year Sundays are the only days that you can devote entirely to research and writing. Now I rest on Sundays, attend to my garden; and about once a month I spend a Sunday in bed resting and fasting. These are red-letter days for which I always save up a book that I am particularly anxious to read. I think the importance of fasting has not been sufficiently recognized. A forty-hour fast, during which you consume nothing but fruit juices decongests the organism and has a very beneficial effect. I also do all my writing in the morning on an empty stomach as I found long ago that I work much better before than after meals.
And so with three incurable diseases I have been very fortunate, and I only wish that things may continue as they are for a few more years so that I may complete my work. And I also wish that I may be granted to end my life at home and not in the hospital. I have a horror of the hospital, that blend of penitentiary and third-class hotel. Of course, we need hospitals and we must be grateful that there are so many excellent ones. Many examinations and treatments are impossible or at least very difficult outside of a hospital. But it is a dreary place, nevertheless, with its sterile-looking rooms, bare walls, high beds, and the necessary but rigid routine that makes it so difficult to rest. The rooms are obviously not made to live in but to be treated in, and even the flowers that friends so kindly send us rarely succeed in brightening the room because they arc no organic part of it and rather give it the appearance of a funeral parlor. How much nicer it is to be sick at home where we have our books, where the cat takes the place of a hot-water bottle, and where we may count on a decent cup of tea.
We all know what the final stages of such a cardiovascular disease are. There are various possibilities, some of which are less desirable than others. We also know that death may come unexpectedly from an unrelated accident or some intercurrent disease that a weakened heart is unable to overcome. But whatever fate may have in store for us, we must be prepared to accept it and to die as we have lived, rejoicing at the thought that it was given to us to live through a fascinating period of history and to take an active and creative part in it, on the progressive side to which the future belongs; rejoicing also in the knowledge that we are leaving children and former students behind who will carry on from where we stop.