Anatomy of an Illness as Perceived by the Patient Read online

  What was significant about the laughter, I said, was not just the fact that it provides internal exercise for a person flat on his or her back—a form of jogging for the innards—but that it creates a mood in which the other positive emotions can be put to work, too. In short, it helps make it possible for good things to happen.

  Carole wanted to know how she could find things worth laughing about. I said she would have to work at it, just as she would have to work at anything else worthwhile. I suggested that members of the family ought to take turns going to the library, for example, in order to find books with genuine laugh-producing qualities. I wasn’t thinking just of joke books by collectors such as Bennett Cerf—although I doubt that I have ever known anyone who was more systematic about pursuing good stories than Bennett, who once contributed a regular column on publishing to SR—a column that always managed to include a story or two worth retelling. I told Carole that I had in mind writers like Stephen Leacock and Ogden Nash and James Thurber and Ludwig Bemelmans. I also suggested books like Max Eastman’s Enjoyment of Laughter, and the Whites’ Subtreasury of American Humor. In any case, I was certain she and other members of the family would enjoy tracking down these and other books, and I hoped she would look into the humor of other cultures.

  Carole brightened at these suggestions. Then I told her she could do something for me. She could pick out one of these stories each day and share it with me. Specifically, I suggested that she telephone me at 9:30 A.M. every day and tell me what she and the family regarded as the best of the day’s crop.

  Then I spoke to Carole’s mother, who fell in with the idea. She said she would develop a plan under which each of the members of the family would take turns going to the library or the bookstore, for material the entire family could examine. Everyone would then join in the voting for the story to be read to me over the telephone by Carole.

  Two days later, the plan was in full operation. Carole telephoned. Her voice was vibrant. She was laughing even before she could finish her first sentence.

  “I don’t know whether I’m going to be able to get this out,” she said. “Even before calling you I tried to rehearse so I wouldn’t laugh before I reached the punch line, and I broke up each time. I’ll probably wet the bed before I get through. We did some research on the kinds of stories that might interest you. You play golf, don’t you? At least I read somewhere that you occasionally play with Arnold Palmer and that you perpetuated some spoofs on golf in Saturday Review.”

  I confessed to an inept acquaintance with the sport.

  “Well, there was this priest who was playing golf,” she said, “and he had difficulty in hitting the ball over a small pond. After he put five balls in the water, he hesitated before teeing up again, then said to his caddy: ‘I know what I’m doing wrong. I just forgot to pray before each shot, that was all.’ He prayed, then swung at the ball—and it traveled about twenty yards in a loop right into the water. ‘Father,’ asked the caddy, ‘might I make a suggestion?’ ‘Certainly, son,’ the priest said. ‘Well, father,’ the caddy said, ‘the next time you pray, keep your head down.’”

  It was one of the oldest stories in the history of golf, but it was new to Carole and I joined in her unrestrained laughter. Then she told me that most of the fun came during the family discussion the previous afternoon, when they considered a dozen or more stories before deciding on the one she would tell. “It was wonderful,” Carole said. “My mother came back from the library with about a dozen books and she had the time of her life acting out some of the funny stories. She always wanted to go on the stage anyway. Well, after she completed her act, we all voted for our favorite. My brother took his turn in the library this morning. He’s more literary than the rest of us. He’ll probably come back with passages from O. Henry or Mark Twain or a short story, so get ready for a long session the next time I call.”

  What pleased me most about the incident was that the family was finding a new and far more pleasant connection to Carole. The fact that they had been able to be collectively engaged in a joyous enterprise involving Carole was as important to them as it was to her. When Carole’s doctor telephoned two days later, it was this new aspect of the family situation that pleased him most. He said that his visit to the home almost startled him, for the faces were no longer morose and furrowed but open and expectant. Members of the family competed with one another in telling him what they were doing and even made him vote on the next story that Carole should tell me.

  Two weeks later, the doctor telephoned again to say he felt the big gain that had been scored was in the quality of life for the entire family. It was too early to say anything about Carole’s physical condition, but it seemed clear to him that she had much more energy and was definitely more hopeful.

  The central point the doctor had made about the quality of life is worth stressing. Not every illness can be overcome. But many people allow illness to disfigure their lives more than it should. They cave in needlessly. They ignore and weaken whatever powers they may have for standing erect. There is always a margin within which life can be lived with meaning and even with a certain measure of joy, despite illness. Not all serious and even fatal illnesses are accompanied by high fever and unremitting pain. It is possible, therefore, for at least as much emphasis to be placed on the quality of life as on treatment.

  This principle was underlined for me by a New York City doctor who telephoned to say he had terminal cancer. He said he had been prompted by the NEJM article to try to get the most out of life while he was still mobile and capable of making direct contact with all the things that gave him pleasure.

  “I don’t think I would dare suggest to others what I am doing for myself,” he said. “There is such a strong tradition to do battle against cancer with all the technology and chemotherapy at our command that we seldom have the time or the courage to ask other important questions—questions involving values. Are we justified, for example, in going at a terminal cancer victim with chemotherapy and radiation that will produce all sorts of enfeebling complications, just because of the possibility that we might be better able, hypothetically, to add a few months to a patient’s life? Or is it better for that individual to use every minute of that time in ways that are rewarding and life-giving? The choice was easy for me. I am now doing many of the things I always wanted to do. I can’t be too strenuous, of course, but it is surprising how active I can be compared to the immobility I had feared.

  “What I do for myself comes out of my philosophy, not out of my science. Once I depart from science in the treatment of others, I am in another field entirely—one for which ministers and psychologists are perhaps better qualified than I. It is something of a dilemma for me, but I am attempting, even within the context of traditional treatment, to upgrade the spirits of my patients. I’ve had a great deal of luck in getting them to take humor seriously”—he chuckled over his juxtaposition—“and I thought you might be interested in knowing that it works very well. I don’t hesitate to tell them that I’ve got the same problem as they do. When they see me laugh, they almost feel ashamed of themselves if they are incapable of doing the same. My sessions with my patients are anything but grim. I want them to look forward to my coming. I want to look forward to being with them. And I just wanted you to know that what you said about laughter in the NEJM is just fine with me.”

  What was most striking about his account was that his perception of his duty as a medical scientist was in conflict with his philosophical convictions on the art of living. He felt bound by his training to confine himself to the treatment of disease. Yet his own problem and the problem of his patients transcended disease at a certain point and involved basic values in living. His solution to his own problem was to put the quality of life ahead of the kind of scientific treatment that was generally prescribed in cases such as his own.

  Many writers throughout history have had different interpretations of this general dilemma, Tolstoy, Dostoyevsky, Molière, and G.B. Shaw amon
g them. Is life to be prolonged under conditions of extreme suffering? Does the doctor have the obligation to fight disease with every weapon at his disposal, even though the weapons he uses will levy a heavy tax on the way a person feels?

  Other dilemmas have to do with the need to decide which life to save where the doctor can save only one, such as the case of mother and child. The dilemma of the doctor to whom I had spoken was perhaps the most vexing of all. How far does he go beyond his own discipline in applying what he himself believes to be true? Is there a conflict at times between the treatment of disease and the treatment of human beings?

  Many medical schools are now dealing with questions such as these. The decade of the 1970s has seen an important new awareness of the need to prepare medical students not just for the profession of medical science but for dealing with abstract issues continually being created by new knowledge and by a fast-developing technology. The National Endowment for the Humanities, created by an act of Congress, has appropriated many millions of dollars for the development of courses on medical ethics. At least fifty schools of medicine have benefitted from NEH grants in this area. The Hastings Foundation has undertaken perhaps the most comprehensive studies in the field of medical ethics of any private organization. A number of leaders in medical education have formed an organization, the Society for Health and Human Values, which serves as a center not just for the development of ethics and values in the curriculum of medical schools, but as an exchange post for those inside and outside the medical profession. Another important development in this field is the establishment at Columbia University’s College of Physicians and Surgeons of Man & Medicine, a quarterly journal of ethics and values.

  Earlier in this chapter, I wrote about Carole’s apprehension that her doctor might not understand what it was like to be seriously ill and on a downslope. The idea is worth pursuing.

  In his book, Out of My Life and Thought, Albert Schweitzer wrote about his own serious illness in early middle age, and his conviction at the time that if he ever recovered he would never forget his own feelings while ill; he would try as a doctor to give at least as much attention to the psychology of the patient as he did to a diagnosis. There is a “fellowship of those who bear the mark of pain,” Schweitzer wrote in his book. Those outside this fellowship have great difficulty in comprehending what lies behind the pain.

  I know that, during my own illness in 1964, my fellow patients at the hospital would talk about matters they would never discuss with their doctors. The psychology of the seriously ill put barriers between us and those who had the skill and the grace to minister to us.

  There was first of all the feeling of helplessness—a serious disease in itself.

  There was the subconscious fear of never being able to function normally again—and it produced a wall of separation between us and the world of open movement, open sounds, open expectations.

  There was the reluctance to be thought a complainer.

  There was the desire not to add to the already great burden of apprehension felt by one’s family; this added to the isolation.

  There was the conflict between the terror of loneliness and the desire to be left alone.

  There was the lack of self-esteem, the subconscious feeling perhaps that our illness was a manifestation of our inadequacy.

  There was the fear that decisions were being made behind our backs, that not everything was made known that we wanted to know, yet dreaded knowing.

  There was the morbid fear of intrusive technology, fear of being metabolized by a database, never to regain our faces again. There was resentment of strangers who came at us with needles and vials—some of which put supposedly magic substances in our veins, and others which took more of our blood than we thought we could afford to lose. There was the distress of being wheeled through white corridors to laboratories for all sorts of strange encounters with compact machines and blinking lights and whirling discs.

  And there was the utter void created by the longing—ineradicable, unremitting, pervasive—for warmth of human contact. A warm smile and an outstretched hand were valued even above the offerings of modern science, but the latter were far more accessible than the former.

  I became convinced that nothing a hospital could provide in the way of technological marvels was as helpful as an atmosphere of compassion. Also, continuity of personnel. Well-to-do patients are generally in a position to protect themselves against a long procession of different faces; they can hire medical attendants according to any standards they may wish to apply. But for most people the facts of hospital life involve discontinuity, fractioned care, and inadequate protection against surprise. People come and go; you make your adjustments as best you can.

  The central question to be asked about hospitals—or about doctors for that matter—is whether they inspire the patient with the confidence that he or she is in the right place; whether they enable him to have trust in those who seek to heal him; in short, whether he has the expectation that good things will happen.

  Several doctors wrote to ask whether I had been influenced in my decision to use large doses of ascorbic acid by the statements and writings of Linus Pauling. My experience with ascorbic acid occurred in 1964. Dr. Pauling’s first major work on ascorbic acid (Vitamin C and the Common Cold) appeared in 1970. After the publication of that work, I wrote to Linus Pauling about the episode. Since that time, we have corresponded and I have followed his research in this field with great interest.

  Some of the letters from doctors asked whether there had been anything in my medical history to prepare me psychologically and philosophically for the “partnership” with Dr. Hitzig in the diagnosis and treatment of my illness in 1964. There were two such episodes.

  My first experience in coping with a bleak medical diagnosis came at the age of ten, when I was sent to a tuberculosis sanitarium. I was terribly frail and underweight, and it seemed logical to suppose that I was in the grip of a serious malady. Later it was discovered that the doctors had mistakenly interpreted normal calcification as TB markings. X-rays at that time were not yet a totally reliable basis for complex diagnosis. In any case, I spent six months at the sanitarium.

  What was most interesting to me about that early experience was that patients divided themselves into two groups: those who were confident they would beat back the disease and be able to resume normal lives, and those who resigned themselves to a prolonged and even fatal illness. Those of us who held to the optimistic view became good friends, involved ourselves in creative activities, and had little to do with the patients who had resigned themselves to the worst. When newcomers arrived at the hospital, we did our best to recruit them before the bleak brigade went to work.

  I couldn’t help being impressed with the fact that the boys in my group had a far higher percentage of “discharged as cured” outcomes than the kids in the other group. Even at the age of ten, I was being philosophically conditioned; I became aware of the power of the mind in overcoming disease. The lessons I learned about hope at that time played an important part in my complete recovery and in the feelings I have had since about the preciousness of life.

  By the time I was seventeen, I had completely overcome the early frailty. I had fallen in love with vigorous sports; year by year my body continued to grow and harden. This addiction to sports stayed with me. I have also had the advantage of being married to a woman who is endowed with a blessed cheerfulness and who believes deeply in the advantages of good nutrition.

  The second major episode occurred during 1954, in my thirty-ninth year. With increased family responsibilities, I thought it prudent to apply for additional insurance. The company doctors turned me down, saying the cardiograms showed evidence of a serious coronary occlusion. My aunt, who was the insurance agent, was completely frank about the findings of the doctors. Despite the absence of active supporting evidence, they diagnosed an “ischemic” condition, characterized by a thickening of the walls of the heart and an erratic heartbeat. She sai
d they urgently advised me to give up almost everything and to take to my bed for several months. I felt demolished by this report. It was inconceivable that I would have to give up my job, my travels, and an active sports life. But here was my aunt telling me that the insurance doctors said that if I became completely inactive, I might be able to stretch out my life for a year and a half.

  I decided to say nothing to my wife about the verdict of the insurance doctors. When I came home that night, my little daughters came running up to me. They liked to be thrown high in the air and to dive from my shoulders onto the couch. For a split second, I looked down two roads. One was marked “cardiac alley.” If I accepted the advice of the specialists, I would never throw my girls in the air again. The second road would find me working full tilt at SR and doing all the other things that spelled life to me. The second road might carry me for a few months or a few weeks or a few minutes; but it was my road. It was an easy decision. I caught my little girls as they came running up to me and threw them higher in the air than ever before. The next day I played in a singles tennis tournament for perhaps a total of forty-five or fifty games.

  The following Monday I telephoned Dr. Hitzig and informed him of the grim verdict of the insurance doctors. He ordered me to his office immediately, then took me to the chief of cardiology at Mount Sinai Hospital. The hospital cardiograms confirmed the insurance reports. I went back to Bill Hitzig’s office. We had a good talk. I told him I intended to do exactly what I had been doing all along and that I doubted there was any cardiograph in the world that knew everything that had to be known about what made my heart tick. Hitzig patted me on the back and said he was behind me all the way.

  Three years later I met Paul Dudley White, the famed heart specialist. He listened carefully to the account of what had happened, then told me that I had done the only thing that could have saved my life. He believed that sustained and vigorous exercise was necessary for the proper functioning of the human heart, even when there was evidence of the kind of cardiac inefficiency that had been diagnosed in my case. He said that if I had accepted the verdict of the specialists in 1954, I probably would have confirmed it.