Anatomy of an Illness as Perceived by the Patient (13 page)

I said I was, especially at the start when I expected my doctor to fix my body as though it were an automobile engine that needed mechanical repair, like cleaning out the carburetor, or reconnecting the fuel pump. But then I realized that a human being is not a machine—and only a human being has a built-in mechanism for repairing itself, for ministering to its own needs, and for comprehending what is happening to it. The regenerative and restorative force in human beings is at the core of human uniqueness. Sometimes this force is blocked or underdeveloped. One of the most important things a doctor can do for a patient is to assess the capacity of each individual to put that force fully to work. Carole's doctor was giving her important advice when he told her that his treatment would work best when combined with the natural drive of the body to right itself.

I was also fortunate, I said, in having a doctor who believed that my own will to live would actually set the stage for progress; he encouraged me in everything I did for myself.

Carole said she was curious about the laughter. Was it really as important in my recovery as the article had indicated?

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 among 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.