It happened ten years ago, in the middle of the night, while I was traveling in a Pullman berth, that I woke up with a sudden, sharp pain in my chest – retrosternal, radiating down along the left arm into the fingertips of my hand: angina. It was typical enough; sharp and brief. Recognition was instantaneous and beyond doubt, and it has remained so in spit of conscious doubts and dissuasions. It was like fate speaking, lucid and solemn. I knew that first moment with the certainty that goes far beyond intellectual knowledge, that this was the beginning of a new eoch in my life, that this was a new factor in my life which would never leave me, which would enslave me; and that, sooner or later, I should have to acknowledge its presence and its power. But these certainties were not thoughts, nor the result of thoughts; they were like flashes of lightning, in the creation of which I had not played a conscious role. They were as independent of any deliberate actions of mine as was the pain. There was no fear and no terror. And soon I was sleeping again.
The next day was a busy one for me: conferences, meetings, seeing old friends, a late dinner, good company with much mental stimulation. And there was no pain. At the end of that long and pleasant day, the pain of the night before had, in my consciousness, hardly more reality than a dream. But just like a poignant dream, that pain (with its significance) continued to be alive in a deeper and more intimate layer than the intellectual pursuits of the day. In the same deep layer was born what was, then, the inevitable decision to dissimulate the pain, to keep it secret.
A few days later: another brief episode of pain. In the next three or four weeks the frequency of pain increased until, about three months after the first attack, days free from pain were rare. It now seemed no longer possible or desirable to negotiate with my problem on a specially created level which was neither that of intellectual action nor that of dreams and fancy. I prepared what I called my indictment, collecting all evidence against myself as to history, diagnosis and prognosis.
My parents had died relatively young, my father probably of a coronary occlusion, my mother of a cerebral accident, the final event in the course of glomerulonephritis or malignant hypertension. First conclusion: probable inheritance, from both parents, of a vulnerable vascular system.
In my teens I had had two lengthy episodes of acute rheumatic polyarthritis, and later on, several periods of illness, that mayor may not have been closely related to rheumatism. More than a decade before the first attack of pain, I had become conscious of the fact that physical effort would cause slight dyspnea more readily than it used to. At that time, expert medical observation did not reveal any abnormality, except that my blood pressure was around 140 over 90 instead of my former 110 over 70. Whatever slight complaints I then had, were readily repressed or forgotten in a busy life that was not unsuccessful. But retrospectively I had to admit that during the last decade I had, step by step, developed more and more sedentary habits, that I had, more and more, given up strenuous exercise. Second conclusion: insidious development of vascular disease (with some symptoms of peripheral vascular disease, that had developed during the last few years).
The total indictment: hereditary stigmata of vascular disease; history of rheumatic fever; evidence of slowly progressing vascular disease during the last few years. And what could be said for the defense? Quite a lot. Following the bouts of rheumatic fever in my adolescence, I was repeatedly examined by internists of international reputation and by cardiologists of comparable standing; there was no evidence of any cardiac abnormality. I had, in my late teens and my early twenties, indulged in strenuous sports and exercise; I had been accepted for unlimited service in the army during the first World War and I had done my duty with combat units without difficulty; I had, in my early thirties, passed a rigorous physical examination for life insurance, which included roentgenological and electrocardiographic observations. I, the defendant, was duly impressed by the evidence for the defense.
It was not until the sixth month following the first cardiac pain that I went to an internist, who, inevitably, was a good friend. No abnormal findings. But still I had the attacks of pain. Did I not know that I was a high-strung person, that I worked and worried too much, that I did not relax properly; that with such a personality, vascular spasms were frequent? And during the first consultation, the taboo was established, the verbal taboo “angina.” Did I get pain on exercise? No. (But I hardly ever did any real exercise.) And there, we had the semantic straw: it was not “angina of effort.” Well, then, did I have it? No. But I had the pain. I was quite willing to play the game-more and more consciously. One must avoid the word because of its disagreeable and prognostic implication. What did precipitate pain? Sometimes it came without recognizable cause, sometimes mental and emotional stress brought it on but not effort — which proved that my heart was all right, even though I had vagospastic tendencies. I must learn to relax to take things easy. Vasospasms, relieve myocardial anoxia of short duration, hypochondriacal tendency to fix whatever symptoms I might have on my heart because of my family history and because of my own history and because of the anxiety caused by cardiac pain. The pact was silently agreed upon: angina is taboo; I have pain, but it is not caused by any damage to myocardium or coronary arteries. Psychic factors may act as a trigger mechanism to precipitate pain. Since in my case the pain had no causative background of anatomical disease, it had to be due to my (faulty) way of reacting — so it was intimated. Many physicians insinuate that the responsibility is up to the patient, and, what is probably more important, induce feelings of guilt in the patient if he does not successfully discharge this responsibility; that is, if he does not get well. To the natural disease, the physician has added iatrogenic disease. But these are thoughts which I formulated only years later, and, even if they had been in my consciousness during those initial consultations, they would not have been uttered, because they might have vexed my friend who happened to be my physician. The semantic play went on-and so did my initial certainty.
There was more than this one reason why I played the game so willingly. There was, of course, the slight possibility that he might be right and I might be wrong, although I admitted this only on the strictly intellectual plane. I did not want to have heart disease (and here I became the accomplice of my physician) and, if I had It, It had to be concealed it could not be permitted to interfere with my work (which I thoroughly enjoyed) or with my pleasures, and it could not be allowed to cause worry to my wife.
Whether or not I had heart disease, I had the pain. Sometimes quIte severe, at other times relatively mild; but always the pain had a modality different from that of any other pain I had ever experienced. Even in its milder forms, it was an intimate pain, a pain that struck into the center of life itself. In its severer forms, it carried with it the warning of its destructive potentialities.
Within the first six months or so I had learned quite a bit about the pain attacks. While many of them came out of the blue sky, without any recognizable cause, I had learned that attacks were likely to come under certain circumstances. They occurred at times of emotional stress, during defensive or aggressive arguments, with anticipation of an unknown situation or of known annoying circumstances; also quite definitely when the barometric pressure was dropping rapidly.
Fortunately, I had learned to use with optimal benefit the merciful action of nitroglycerin. Not only would nitroglycerin promptly relieve pain, but, taken judiciously, it would prevent it. During the last three or four years, the average intensity of the attacks has become milder. I cannot decide whether this should be ascribed to improving collateral circulation or to the more efficient use of nitroglycerin. I should mention, parenthetically, that sodium nitrite has a fair preventive action for about twenty to thirty minutes, and that amyl nitrite causes the quickest relief, even when nitroglycerin is not fully effective. In my subjective experience all other so-called coronary dilators, such as mannitol hexanitrate, aminophyllin, and papaverin (even on long and systematic administration), are without effect on the frequency and severity of the pain. I had learned that pain need never be severe, unless it struck at night and woke me up, because nitroglycerin could always be on hand and could be taken unobserved by other persons present. I discovered many tricks and learned that pam need never — and it never did — interrupt any activity, teaching, taking care of patients, public speaking, even mild forms of sports. And so it became possible to keep the secret of my pain, entirely successfully. I did not fail to see the irrationality of my behavior, and I knew that it needed explaining.
By careful self-analysis, using both clear thinking and the vaguer voices of subconscious symbols, I found this explanation: admitting disease, especially chronic and eventually invaliding disease, is admitting defeat. It means curtailment of individual freedom, giving up the free choice of decision. This loomed as unbearable.
As time went on and the symptoms increased, I felt the need for deeper understanding of myself. Unwillingness to admit defeat and to accept curtailment were true reasons-or at least rationalizations for my attitude; but the real question was why I felt this way. The reasons I had given to myself seemed valid only on a relatively superficial level and only on a strictly conscious and intellectual plane. The next step, then, was to look for deeper causes; and the will to find them yielded immediate results: shame was the motivation I recognized first. Shame of being ill, of not functioning efficiently. This is a factor I had seen at work in other patients. But why shame? Is one responsible for one’s disease? This is intellectually absurd, but emotionally correct. What have you done to the body that was given you in as normal a condition as the next one? Here, I heard a small voice saying, “Responsibility — failure — guilt — shame.” With a puritanical upbringing in which individual responsibility was the center of the ethical code, the mind or at least the subconsciousness is practically channeled to: the causal chain: Responsibility — failure — guilt — shame. This went back to early childhood and, if for no other reason, was an infinitely more powerful influence than what I later recalled as the insinuations of my first physician. I might well have been impervious to these, had not childhood influences prepared the soil for the seed. The failure to accept disease is frequently seen in patents; its manifestations vary. Do early influences in life cause the unwillingness to accept disease, or do they only mold the individually different expressions of it? Or is the nonacceptance of disease the survival of one’s healthy past?
Nitroglycerin was not the only treatment, nor was anginal pain the only symptom. There were bouts of utter exhaustion and fatigue, there was heart-consciousness with pounding pulses, palpable and audible, that made sleep impossible during many late hours. There was increasing dyspnea on exertion, with astoundingly large fluctuations. Consequently I limited my actiVities, increasingly curtailed social contacts and learned better to deputize minor duties. Careful planning of the day’s routine helped to eliminate unnecessary effort. I avoided walking with friends and colleagues, so that I might be the pacemaker and not be questioned about my slow motion or brief stops. ‘When company could not be avoided, I learned the trick of seeing something of interest in any shop window, in any tree, that gave me an excuse to stop for a moment whenever I wanted to-that is, whenever cardiac pain started. One’s life becomes curiously distorted when all planning of daily routine and of exceptional activities is governed by the principle of avoiding physical exertion; when small trips through the city are planned so that climbing stairs is reduced to a minimum — even at the cost of detours and loss of time; in other words, when inherent aim and purpose are not the deciding factors, but rather the saving of steps, and especially steps up.
Although the hours of discomfort increased and the severity of symptoms grew, I derived a curious satisfaction from my successful attempt to keep my secret. But living with such a secret has significant consequences: it isolates you from your companions; it creates what is almost a dual life, a dual personality.
For geographic and other reasons, I had to consult other physicians during my ten years’ experience with heart dIsease. The patient-physicIan relation is complex and difficult at best; but when the patient is a physician, the complexity takes on new aspects. Since I know that my experience is not unique but rather typical, this relation deserves further analysis. I have been under treatment by a good many physicians for a number of different illnesses. I want to stress at the outset that they were all highly competent and able men, that practically all of them showed genuine professional and human interest in me and were ready to sacrifice time and effort. They all did their best in diagnosis and treatment, and their rosiest best in prognosis. But, with one or two exceptions, they did not understand the full extent of the help they could have given, nor the type of help I had expected.
The patient needs more than treatment and reassurance; he wants his physician to take the responsIbility upon himself. The patient does not want to carry all or part of the responsibility for his illness, his body. To marshal all the facts on which the most optimistic prognosis may be built is probably routine, justified, even necessary in some cases. But it is infinitely more important that the physician show understanding, not only for the diseased organ but for its possessor. His understanding and interest should not only be for his patient’s illness but for his patient’s way of life. He should not only order the necessary limitations and don’ts, but — more important — he should show his patient the possibilities for enjoyable and fertile living within new limitations. Since chronic disease is not curable, the patient must learn to live in peace with his illness, to reap that fruit which limitations may allow to grow even more luxuriantly than in a normal, active, busy life. Granted that the patient must have and must develop his own resources for all this, his physician should be his guide and he should, at least by active interest, encourage his patient’s activity.
“Hobbies,” such as more or less sterile “collections,” amateurish handicraft, “artistic” production by an inartistic and untrained person-all that has come to be called “occupational therapy” is at best a temporary and eventually unsuccessful trial at fooling the patient into the belief that his life is not useless. As such, it is not therapy, any more than excessive doses of narcotics or alcohol. The aim must be to make life more productive during the period of physical disability than it ever was before. Only by such therapy will the chronic patient come to the point where he really lives in peace with his disease. True, not every patient can do this. But, here we speak of physicians only. It is hard to believe that any physician can be so poor in inner resources that an imaginative and understanding colleague who treats him cannot find some traces of worth-while interests and capacities that can be developed.) These last sentences are in parentheses to indicate that they are not derived from self-observation; I have never been exposed to this human indignity of being urged to kill my time-so precious when one begins to measure it-with silly hobbies. But I do know how frequently it is done. The highest task the physician should aim at with a patient whose illness cannot be cured by the proper application of technical knowledge, is to make his life as agreeable as possible and to see that it is as rewarding as the patient can make it. But many physicians are blind in this regard.
Because I am a physician myself, not more than one or two of my physicians were able (nor did they make even a reasonable attempt) to avoid discussing “my case” with me as if I had been called into consultation. They failed to give definite orders and advIce and tended to say, explicitly or implicitly,
“You know what to do!” But even if I did know, such an attitude fails to give the psychic relief that every patient expects from his physician. The assumption “that I knew” was once carried so far that my surgeon indicated in the nurse’s order book that I would prescribe for myself, immediately after a major operatIon and during a period when I had brief episodes of disorientation. And, be it stressed, I had begged each one of my physicians to treat me just like any other patient and to forget that I had any medical knowledge.
I believe that it is desirable to abandon the tradition by which a physician will not accept payment for his services to another physician. Undoubtedly it is exceedingly rare that a sick physician does not rate top priority with any of his colleagues. The rare exceptions need not be considered. But this tradition works not infrequently to the detriment of the physician-patient; because he may not pay, he tends to hesitate to ask for medical help; he feels embarrassed because he is in the position of beggar, instead of purchaser. Even if this anomalous position does not cause undue delay in diagnosis and treatment (as it frequently does), it is another burden on the patient’s mind; and any patient’s mind is vulnerable.
Nearly two years after my initial pain — years of semantic quibbling wIth my first physician, years of secrecy and dissimulation, years of increasing discomfort and decreasing reserve — I was sent to a first-class cardiologist who made a careful study. Results: no evidence of organic disease and some still more refined technical terms. And even here the attitude: no demonstrable organic disease, ergo the symptoms are irrelevant (but not to me), hence no treatment. I played the game that I was apparently expected to play with him also. And I went back to dissimulation, to nitroglycerin and to my secret. I had tried to get help and advice from prominent physicians. The attempts had been barren of results, and I now had to work out my own solution and make adjustments, as needed, without a physician’s help.
But when you have decided to live in secrecy with your enemy within you and to shield the enemy from recognition at almost any cost, you have deprived yourself of any possibility of coming to terms with the enemy and of making a valid adjustment in your life; for in order to do this, the enemy must be brought out into full daylight. And so another five years passed, and ended Act 1. Results: I had ben successful in keeping my secret, in not admitting defeat, in continuing work that was important to me. And the price? A certain conscious degree of human isolation as a consequence of living secretly with my coronary artery disease. Further, I had deprived myself of the help and understanding that I could have had, as became so clear later on. This deprivation in its turn made physical and psychic discomfort unnecessarily sharp.
Because of some acute symptoms, another physical examination became necessary at the end of five years. I had carried on with no more than perfunctory medical help for all the years after the first attack of pain. Now, there was no doubt about organic disease: my heart was considerably larger than five years before and there were unmistakable signs of chronic rheumatic heart disease. But still, the only evidence of coronary disease was subjective.
The main new symptom that now occurred was slight nocturnal dyspnea of rather short duration. That meant that another traditionally dreaded term must be avoided, must be hidden by new semantic acrobatics. This time it could not be “paroxysmal, nocturnal dyspnea” or-heaven forbid-” pulmonary edema,” but asthmatoid symptoms and allergy because I had occasional rhonchi during these attacks. I did react to some antigens, but they were ones which could not possibly play any role in my life.
The first severe attack of dyspnea created in me the same certainty as had the first anginal pain. Morphine brought relief before a physician could be summoned. Nocturnal attacks of dyspnea were rare, subjective recovery prompt and complete. My attitude remained much the same, and so did that of my physicians. During the next two years, I often wondered whether my physicians were more successful in fooling me, off and on, or whether I was more successful in fooling them – or at times, myself.
But it is not pertinent to tell all details. It may be interesting to recount just two more events, the mechanism of nocturnal dyspnea according to my subjective experience, and finally the period of real readjustment.
A severe attack of paroxysmal dyspnea had usually something of a brief aura, unless I woke with dyspnea from deep sleep, which occurred only twice. There is hardly more than a minute between conscious aura and the height of the attack. The type of dyspnea is profoundly different, not only in severity, but in quality, from dyspnea that effort used to cause in earlier years. The dyspnea of effort is quite similar in feeling-tone to that which extreme effort in sports used to cause in my youth: you knew what caused it and you knew it would stop if you just took a little rest; and it was part of physical achievement. Of course, now the effect was out of all proportion to the known cause, but just the same, the similarity was obvious. Not so with paroxysmal dyspnea. There is no recognizable cause. There is not really a period of increasing dyspnea; there seems an abrupt change from normal breathing to profound respiratory distress. And, while the attack lasts-be it ever so brief-there seems no reasonable likelihood that it will ever end except in destruction. You know it will do so; if not the first or the second time, eventually it will. This is the subjective certainty during the attack; it is not a cool, balanced judgment based on medical knowledge and statistics. I never lost consciousness during an attack; I was always able, with one exception, to administer the first emergency medication and to give directions for oxygen and “bloodless phlebotomy.” I kept on observing and was disappointed that the extreme degree of asphyxiation was not associated with cyanosis that I could recognize. Disappointed? Yes; because I could not help asking myself, how much worse must and can it be to cause cyanosis?
The last phase of this story, which I hope to be the final chapter, started about nine years after the first scene in the Pullman berth. It was initiated by the increasing and partly new symptoms, and also by a degree of impairment which made continuation of my complete professional activity quite impossible. I had to give in, and I did so when the argument had become unequivocal. Radical decrease and change in type of work were arranged. The inevitable change was not easy.
I was astonished to find that the first hurdle I had to overcome was vanity: I had to give up a position of some importance and influence. My voice would be heard much less. I discovered, what I had not expected, that the prestige of my position had given some starch to the texture of my persona. It was, at first, still more difficult to give up work that I loved, that had given me spiritual and emotional sustenance enough to carry me over difficult phases in my life. But the impetus gathered in more than twenty-five years soon pushed me into work that is highly satisfying. And, finally, my work is such that it compensates for the obvious loss by increased intensity and purposeful concentration. It is work that is-in part by sheer luck -suitable to my physical limitations, elastic enough so that it permits me to adapt it to the unpredictable fluctuations in my physical ability to work.
This is important, but it is not all; nor is it the most significant aspect of the present phase. Now that disease and limitations are openly admitted, and secrecy and dissimulation have ended -or almost so-my life has regained a balance that it had lacked for years. Social and human relations are no longer distorted by secrecy and mental isolation. Human understanding and immediacy in feeling-tone are received (and, I believe, also given) in warmth and abundance. It is not only that I again have time, but I also have again the receptivity for love, for human harmony, for a close comradeship, for all the depth and self-sacrificing help that my wife gives me so freely-now that I have been able to remove the artificial barrier of former years that the secret pact with my disease had built up in me.
There may be less cheer, less buoyancy, less Olympian joy in my present life than in younger years, and there is more physical discomfort; but quiet richness, immediacy of relation and a feeling for the presence of deep entwining roots-all this is compensation. It is not the measure of joy and pleasure that matters, it is the intensity of living.
After reading this piece, has your opinion on prescribing exercise changed? Why or why not?
Does this article change how you will treat future patients who also happen to be doctors? How?