Anatomy of an Illness -Norman Cousins
6. What I Learned from Three Thousand Doctors
Following the publication in the New England Journal of Medicine of the first chapter of this book, I was the recipient of some three thousand letters from doctors in about a dozen countries. What was most remarkable and gratifying about these letters was the evidence of an increasingly open attitude by many doctors to new and even unconventional approaches in the treatment of serious disease. There was encouraging support in these letters for the measures that had figured in my own recovery–a well- developed will to live, laughter, and large intravenous doses of sodium ascorbate. Far from resenting the intrusion of a layman into problems of diagnosis and therapy, the doctors who wrote in response to the article warmly endorsed the idea of a patient’s partnership with his physician in the search for a cure.
The letters reflected the view that one of the main functions of the doctor is to engage to the fullest the patient’s own ability to mobilize the forces of mind and body in turning back disease. There was general agreement in the letters that modern medication is becoming increasingly dangerous and that, to the fullest extent, the careful physician should attempt to educate the patient away from reliance on exotic drugs. The new trend favors an understanding of the powerful recuperative and regenerative forces possessed by the human body under conditions of proper nourishment and reasonable freedom from stress.
Not all the communications came from doctors. One episode involving a layman underlines many of the key points raised by the physicians. A New York lawyer telephoned to say that his four-year-old daughter was in a coma and in critical condition in Lenox Hill Hospital. She was stricken with viral encephalitis, against which antibiotics have no record of success. It was difficult for him to accept the fact that nothing more could be done than was being done. The lawyer wanted to know whether, in the light of my own recovery from a severe collagen disease after taking large doses of ascorbic acid, the same treatment might be useful for his daughter.
I told the lawyer that it would be highly irresponsible for me, a layman like himself, to attempt to give medical advice. Moreover, there was no way of deter mining what part of my recovery was due to the intravenous infusion of ascorbate and what part to a full mobilization of the salutary emotions, not excluding laughter or a robust will to live. I suggested that the lawyer consult his daughter’s physician about the possible use of ascorbic acid.
The lawyer said he feared the child’s doctor would be scornful of anything as unsophisticated and over-popularized as vitamin C. I then told him of the large number of medical tracts I had received from doctors, in response to my article, supporting the use of ascorbate in a wide range of disorders beyond the reach of antibiotics or other medication.
In particular, I spoke of the work of Irwin Stone, a biochemist in San Jose, who is among the country’s leading authorities on the efficacy of ascorbic acid in the treatment of serious disease. I offered to send the lawyer reprints of articles from medical journals about the work of Stone and others on the functions of ascorbate in body chemistry. What seemed especially impressive to me about these papers was the data on the ability of ascorbate to activate and enhance the body’s own healing mechanism. I suggested that the lawyer might wish to review this material with the child’s doctor in the event he had not already seen it.
The next day I left for a new round of the Dartmouth conferences in Latvia, U.S.S.R–fourteen years after the Dartmouth meeting described in the opening chapter. While abroad, I made inquiries at various medical centers and learned that intravenous infusions of ascorbic acid had been effectively used in number of cases of viral encephalitis
On my return to New York, I telephoned the lawyer to ask about his daughter. He said he had spoken with Irwin Stone, who told him about recent experiences in which serious cases of viral encephalitis had been reversed through large doses of ascorbate. Armed with this information and with reprints from medical journals I had sent him, the lawyer had spoken to the child’s specialist, only to be rebuffed. When he had offered the materials from the professional journals, the doctor had said he didn’t need to be instructed by a layman in medical matters.
The lawyer then decided on a plan of action. Several days later he asked the specialist whether the next time his child came out of the coma he might offer her some ice cream. The specialist encouraged the lawyer to do so. The lawyer bought a pound of sodium ascorbate, which is more soluble and less bitter than the ascorbic acid form. He mixed at least to grams of the powder into the ice cream, which he put in a thermos jug. He took the jug with him to the hospital, where he stationed himself full time. When his little girl came out of the coma, he asked whether she would like some ice cream. The reply was an enthusiastic yes. He was elated when she gobbled up most of the pint. The next day the lawyer again gave his daughter a large portion of ice cream, enriched this time with an even stronger dose of sodium ascorbate than before. He continued the process day after day, and each day, the child would be able to spend longer periods of time out of the oxygen tent. The improvement continued steadily in the following days, during which the lawyer gave his daughter an average of 25 grams of sodium ascorbate daily. After two weeks the child was taken out of the oxygen tent altogether.
The lawyer’s voice vibrated with excitement over the telephone as he told me of the child’s complete recovery and the prospect of having her home again. I asked if he had informed the specialist what he had done.
“Certainly not,” he replied. “Why should I make trouble for myself?”
Obviously, it is poor–and dangerous–policy for any layman to act behind a doctor’s back. Yet there may be something about the specialist’s attitude that warrants scrutiny. Was there a hardening of the categories that caused him to shut himself off from a serious consideration of alternatives? Was he overreacting to what he regarded as an intrusion? One of the most striking features that emerged from the letters I received from doctors is the evidence of a new respect for the ideas of nonprofessionals. “Nothing is more out of date than the notion that doctors can’t learn from their patients,” wrote Dr. Gerald Looney, of the Medical College of the University of Southern California. “People today are far better educated in medical matters than they were only a quarter century ago. The entire field of nutrition, for example, is one in which many patients can hold their own, to say the least, with their doctors. Maybe the new spirit of consumerism has at last reached medicine. I teach my students to listen very carefully to their patients and to concerned and informed laymen. Good medical practice begins with good listening.”
One of the attractive characteristics of ascorbate is that, properly administered, it does no harm even if it may do little good. Under these circumstances, was there any justification for the total refusal of the child’s specialist to give serious consideration to the lawyer’s request’ Is the obligation of the doctor confined only to the patient! What about the legitimate emotional needs of those very close to the patient? The specialist’s relationship with the child was limited in chronology and circumstance; the father had a lifetime commitment.
Another example of a problem arising from a doctor’s dealings with a relative of a patient concerns the wife of a man dying from cancer in Boston. She telephoned to say her husband had been through the standard treatment-radiation, surgery, and chemotherapy-and she was despairing about the future. She had read that Linus Pauling, the Nobel Prize-winning chemist, had said that vitamin C is a cure for cancer. Her hopes had been raised by this prospect, and she wanted to know if, on the basis of my own experience with a supposedly irreversible illness, I thought ascorbic acid ought to be tried.
As in the case of my conversation with the lawyer, I told the woman that it would be highly improper for me to attempt to give advice. I did, however, call her attention to the fact that Dr. Pauling’s conclusion was based largely on the research of Dr. Ewan Cameron, of the Vale of Leven Hospital in Loch Lomond side, Scotland. Dr. Cameron was careful not to claim that ascorbic acid was a cure for cancer. His word indicated that ascorbic acid would prolong the surviving time of cancer victims but would not reverse cancer His studies involved one hundred patients suffering from advanced malignancies who were given large doses of sodium ascorbate over a period of many weeks. The results were compared with the experiences of a thousand cancer patients of similar condition who were given no ascorbate. The average survival time of the patients in the first group was substantially longer than that of the second group. It is important to note that “substantially” means a matter of weeks or months, and not years. While Dr. Cameron sees no evidence that ascorbic acid can expunge cancer, he believes that his work is significant in that it clearly indicates that ascorbate has cancer-retardant qualities.)
Cancer cells, Dr. Cameron says, release hyaluronidase, an enzyme that attacks intercellular cemera. “Proliferation will continue as long as hyaluronidase is released; proliferation will stop when the release hyaluronidase stops.” Ascorbic acid, according to Dr. Cameron, strengthens tissue-grounding and therefore counteracts hyaluronidase activity.
Such, at least, was the gist of the material that offered to send to the woman in Boston whose husband was dying of cancer. I emphasized that ascorbic acid could not be regarded as a proven cure for cancer or other advanced diseases. She asked whether I would be willing to discuss these matters with her husband’s doctor. 1 told her I thought this would be inappropriate but suggested that her doctor might like to talk to my own physician, Dr. William Hitzig, who had pro- vided full support for my decision to discontinue aspirin, butazolidin, colchicine, and sleeping pills–all of which were toxic in varying degrees–and to seek to reverse my condition through a comprehensive regimen, only one part of which was regular intravenous doses of ascorbate.
The woman telephoned two days later to say she had attempted to discuss the possible efficacy of ascorbate for her husband, only to have the doctor cut her short by chanting “quack, quack” and then describing the whole process as “b. s.”
The woman and her husband decided to discontinue the doctor’s services, although he had been a longtime family friend. They also decided to leave the hospital and to return home, where the atmosphere made for a less stressful environment and where a local doctor was glad to administer the sodium ascorbate.
Their course of action produced results similar to the findings reported by Dr. Cameron. The husband gained some ground. His appetite improved; so did his will to live. He succumbed to cancer after six months–four or five months later than the original prognosis. Most important, perhaps, was that he was able to spend his remaining time in congenial surroundings in the company of his wife.
Death is not the ultimate tragedy of life. The ultimate tragedy is depersonalization-dying in an alien and sterile area, separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience the things that make life worth living, separated from hope.
The trend in modern medicine is to move away from the notion that it is always mandatory to hospitalize seriously ill patients. The great technological advances in electronic equipment, typified by the hospital intensive-care unit, are not without their built-in penalties. A patient in an intensive-care unit is provided with everything diagnostically necessary in an emergency everything, that is, except the sense of security and ease that the body needs even more than pinpointed and clicking surveillance. It creates a tendency to panic, itself one of the most dangerous multipliers of disease. Many doctors are increasingly aware of the circular paradox of the intensive-care unit. It provides better electronic aids than ever before for dealing with emergencies that are often intensified because they communicate a sense of imminent disaster to the patient. It dramatizes the absence of warm contact between physician and patient.
Dr. Jerome D. Frank, of the Johns Hopkins University School of Medicine, told students at the university’s graduating exercises in 1975 that any treatment of an illness that does not also minister to the human spirit is grossly deficient. He cited a 1974 British study showing that the survival rate of patients with heart disease being treated in an intensive-care unit was no higher than the survival rate of similar patients being treated at home. His interpretation was that the emotional strain of being surrounded by emergency electronic gadgets in an atmosphere of crisis offsets any theoretical technological gain.
In that same commencement talk, Dr. Frank referred to a study of 176 cases of cancer that remitted without surgery, X-rays, or chemotherapy. The question raised by these episodes was whether a powerful factor in those remissions may have been the deep belief by the patients that they were going to recover and their equally deep conviction that their doctors also believed they were going to recover.
One of the most succinct statements I have read anywhere bearing on the need of the patient to have faith in the physician was written by Dr. Robert R. Rynearson in the Journal of Clinical Psychiatry, June 1978 “Illness,” wrote Dr. Rynearson, “particularly chronic illness, may force the sufferer into a dependent relationship with the person who offers to heal him. If trust does not become an important part of this relationship, it is unlikely that healing will occur. Physicians who ignore the importance of the relationship with the sufferer are often those who possess a Simpleminded philosophy about illness–that is, that illness is the enemy which he assaults with all the skill and technology at his command. And, technology being what it is today, the sufferer may succumb to the treatment.
“Physicians need to be in actual touch with patients. Increasing technology in medicine is pushing the physician away from the patient. If the physician allows machinery to be interposed between him and the patient, he will be in danger of forfeiting powerful healing influences. A thorough physical examination fosters trust–there is a laying on of hands and a listening attitude. The sufferer is being touched and understood. The physician is then allowed to collaborate with the patient in altering the delicate balance between illness and health.
“Physicians must resist the idea that technology will some day abolish disease. As long as humans feel threatened and helpless, they will seek the sanctuary that illness provides. The distinguished scientist and humanitarian, Jacob Bronowski, cautioned us in this regard: ‘We have to cure ourselves of the itch for absolute knowledge and power. We have to close the distance between the push-button order and the human act. We have to touch people.’ “
Dr. Bernard Lown, professor of cardiology at the Harvard University School of Public Health, said in Modern Medicine magazine (September 30, 1978), that he believed it important for the physician to be present at the emergency room when his or her patient arrived. “Nothing is more decisive,” he said, “in determining the outcome following a heart attack than for the patient to see his own physician. You can provide reassurance and psychological support at this crucial time in the patient’s life.
“If you look at the total spectrum, 40 percent of patients who have a heart attack die. And patients are aware of this fact and perceive they may be dying. .. A second important principle is the laying on of hands–a practice that is rapidly atrophying because physicians are too busy with a laying on of tools. Both presence and touch help to establish a reassuring connection with the patient. I believe that physicians must recognize this profound truth before turning to drugs–the lidocaines, the morphines, the quinidines, and the like. So when I arrive, I say, to the patient: “Yes, you have had a heart attack, but you are going to recover. And I’m very dogmatic about it even though the attack may be so massive that I have great trepidations about prognosis.”
I mustn’t make it seem that medical technology does not represent a great boon in diagnosis and treatment. It is now possible, for example, to spare patients the ordeal of exploratory surgery because of a device that can enable the physician to peer directly into areas of the body that were not visible except by invasive procedures. The same device can be adapted to snip off harmful growths without having to perform deep surgery to get at them. Other machines are equally beneficial.
The problem with the new technology is that some; practitioners tend to forget that these marvels can be intimidating to the patient, particularly when the last thing in the world the patient needs is another strange face or strange experience. Encounters with electronic gadgets call for careful psychological preparation, if the level of apprehension is not to be raised. All this requires time, of course. Time is the one thing that patients need most from their doctors–time to be heard, time to have things explained, time to be reassured, time to be introduced by the doctor personally to specialists or other attendants whose very existence seems to reflect something new and threatening. Yet the one thing that too many doctors find most difficult to command or manage is time. Indeed, some doctors tend to favor the new technology precisely because they don’t have time enough to allow the diagnosis to emerge from comprehensive direct personal examination and from extended give-and-take with the patient.
Sometimes a battery of tests will be given pro forma, even though the need for them is not clear. This can be expensive for the patient. Dr. Grey Dimond, provost of the school of medicine of the University of Missouri at Kansas City, sent me the copy of a bill for medical services received by an elderly woman of his acquaintance. I quote from Dr. Dimond’s letter:
“The examining doctor had no compunction what- ever in requesting $25.00 for an electrocardiogram; $20.00 for a ballisto-cardiogram (which is a useless procedure); $20.00 for an apexcardiogram (of no use in clinical practice); $3500 for a vectocardiogram (totally of no recognized use in clinical medicine); $15.00 for a fluoroscopy (which he should not have been doing because of the risk to himself as well as the patient); $3500 for a basal metabolism test (which is no longer done at teaching hospitals); and, finally, two urinalyses for $15.00 (I do not quarrel with these last two procedures simply because I do not know why they were ordered.)
“I send this bill along to you, realizing that one such doctor’s billing proves nothing. I have watched this steadily happen, however, in American medicine, and you and I both know that the public is now highly vocal and greatly concerned over the disappearing attentiveness of the physician and the increasing mechanization of medical care. … When the physician placed himself on a fee schedule wherein he could justify his livelihood only by ‘doing something,’ he inevitably began shutting down the essence of a physician’s purpose: the human contact.
“At the same time, he automatically placed himself at the disposal of a computer appraisal, and equally, permitted surgical procedures and mechanistic medicine to have premium positions on the fee-for-service scale. There has been no corresponding dollar return for the time spent in taking a detailed history and doing a slow and purposeful physical examination, and above all making the patient understand what has been done, why it was done, and what is the appropriate health care program.”
The basic issue is not the usefulness of the new technology. It is the philosophical frame which the new technology is brought into play and how it is used.
Perhaps the most serious consequence of the new technology is that it is pushing the doctor’s little black bag out of style and, possibly, out of existence. Indeed, one of the reasons why so many doctors decline to make house calls is not just that out-of-office functions are too time-consuming, but that they no longer feel comfortable practicing out of a little black bag. They have allowed their skills to be harnessed to computers and exotic electronic diagnostic equipment.
Hundreds of letters from doctors about the NEJM article reflected the view that no medication they could give their patients was as potent as the state of mind that a patient brings to his or her own illness. In this sense, they said, the most valuable service a physician can provide to a patient is helping him to maximize his own recuperative and healing potentialities.
In my NEJM article I had allowed for the possibility that I might have been all wrong about the efficacy of ascorbic acid, and that I could have been the beneficiary of a self-administered placebo.
Dr. Bernard Ecanow and Dr. Bernard Gold, of the University of Illinois at the Medical Center, wrote to say that it was serious error for me to believe that the improvement in my condition after the systematic use of ascorbates was merely a placebo effect. They had done extensive research on the subject, and enclosed papers showing that ascorbate has a dispersal effect on clusters of red blood cells (RBCs). The reason my sedimentation rate had dropped after each intravenous dose of ascorbate, they said, was because it “produced dispersal of-aggregated RBCs through its water structure breaking (hydophobic bond-breaking) effect, breaking up the structural water macromolecular matrix so that the RBCs are no longer held together by it.”
I interpreted this explanation to mean that ascorbate was useful in restoring the chemical balances in the blood, or what Waiter Cannon termed homeostasis.
Additional supporting data on the improvement in my condition after taking ascorbic acid came from the Lederle Research Laboratories. Drs. Arnold Oronsky and Suresh Kewar reported on research in their laboratories showing that ascorbic acid is essential for the proper functioning of prolylhydroxylase, which in turn is essential for the synthesis of collagen. The significance of ascorbate in the treatment of collagen diseases such as arthritis, therefore, seems compelling.
Earlier in this chapter, I referred to the work of Irwin Stone. With the exception of Albert Stent-Gyorgyi, Stone probably has probed more deeply into the phenomenon of ascorbic acid than any other medical researcher in the country.
Stone has attempted to account for the fact that the human species is unable to manufacture or store ascorbic acid, a vital ingredient in the immunological system installed by nature in all members of the animal kingdom except man and several other mammals.
Fascinated by this fact, Stone pursued his study of the subject both anthropologically and biochemically. He developed the theory that a genetic defect took place very early in the course of evolution: human beings lost their ability to make ascorbic acid and have had to depend on food containing the substance that plays so large a part in the immunological system. In areas where citrus fruits and certain vegetables were readily available, the regular diet compensated for the natural deficiency. In northern dimes, however, the absence of citrus fruits resulted not just in scurvy but in increased susceptibility to a wide range of illnesses, minor and major.
Irwin Stone emphasizes that ascorbic acid, strictly speaking, is not a vitamin but a liver metabolite. Its primary reputation as a vitamin, however, has made it heir to the negative feelings of doctors because of the public’s tendency to be attracted to miracle vitamin cures. Stone is hopeful that the medical profession will make a distinction between ascorbic acid and other vitamins not because he undervalues the need for adequate intake of vitamins but because the therapeutic properties of ascorbic acid play such a viral role in the healing process. With respect nor just to poor diet but to an environment becoming increasingly burdened with air and water pollution, congestion, noise, and stress, the antitoxic role of ascorbic acid cannot be overestimated.
I must not make it appear that ascorbic acid can be taken indiscriminately and in limitless doses. Under certain circumstances, it can cause irritation to the digestive system. Such irritation, continued regularly over a long period, may be harmful and even dangerous. Ascorbic acid, especially in potent concentrations, should not be taken between meals. It is most effective when combined with bioflavinoids It has a tendency to absorb vitamin B, therefore requires B complex supplementation. It also tends to chelate minerals out of the body. These characteristics can be highly valuable as a method of treating lead-poisoning or as an antidote to lead in the environment But minerals other than lead are also chelated from the blood as the result of large doses of ascorbic acid.
One can understand the apprehensions of the medical profession about the notion that vitamins are the answer to any illness.
Yet it is also true that some doctors have fostered the equally erroneous idea that the average supermarket shopping basket is insurance against any nutritional deficiency. Considering the preservatives, coloring agents, additives, and sugar overload in many processed foods, it is relevant to refer once again to the pronouncement of the White House Conference on Food, Nutrition, and Health, in 1969; namely, that one of the great failures in the education of medical students is the absence of adequate instruction in nutrition.
In any event, it was encouraging to me, in going through the mail from doctors, to see the growing evidence of a balanced attitude about nutrition in general and ascorbic acid in particular. The negative views held by many doctors only a few years ago are now being replaced by a willingness to examine new findings and to apply them in proper proportion.
It is also encouraging to know that the medical profession is giving increased emphasis to immunology and to the natural drive of the human body to heal itself. Considerable mystery still surrounds this process. As indicated in an earlier chapter, one of the interesting clues now being pursued is the function of ascorbic acid in serving both the immunological and healing processes. In this connection, it is worth calling attention to the current practice of many British hospitals of administering intravenous doses of ascorbic acid instead of antibiotics as a routine postoperative procedure in guarding against infection.
A number of doctors felt that my emphasis on the positive emotions was in accord with an important new trend in medicine. They said it was scientifically correct for me to state in the NEJM article that, just as the negative emotions produce negative chemical changes in the body, so the positive emotions are connected to positive chemical changes. My attention was called to papers by Dr. O. Carl Simonton on emotional stress as a cause of cancer, and by Dr. J. B. Imboden and Dr. A. Canter showing that moods of depression impair the body’s immunological functions.
A dozen or more telephone calls came from physicians who shared the article with patients whose will to live was not very robust. The physicians asked if I would telephone their patients and attempt to encourage them. This I tried to do to the best of my ability. One case in particular is perhaps worth mentioning A physician told me about his patient, a young lady of twenty-three, who was gradually losing the use of her legs because of a collagen-related illness. She lived with her family in Atlanta. One of the psychological problems was that the entire family was becoming unhinged by worry and despair. Hospital care was out of the question because the insurance benefits had long since run out.
Her presence at home, her doctor told me, produced an atmosphere of apprehension and tension. The fact of her progressive paralysis was translated into the visible anguish of all concerned. It was essential, therefore, that some way be found to keep the entire family from disintegrating. The doctor believed that a positive change in the daughter’s own feelings about herself was essential to any change for the better –not just in her own condition but in the collective health of the entire family. He
had given her my article and she had responded so affirmatively that he felt a direct expression of interest from me would be useful. I telephoned the young lady, whom I shall call Carole. She spoke slowly but cogently as she described her difficulty, after two years, in believing that the paralysis would not become progressively worse until she would become totally disabled. Her doctor was trying to persuade her not to give up hope. He had told her that her medication and her exercises would work much better if she had goals in life and put her will to live fully to work.
I asked whether she thought this made good sense. “It sounds fine in theory,” she said, “but I don’t think my doctor has ever been very ill himself, seriously ill, that is. He doesn’t know how long a day can be, how difficult it is to have goals when nothing happens, how your mind turns on all the things that you aren’t supposed to think about, like how you aren’t getting any better and how week after week passes without any progress. You would understand it be- cause you were there yourself. Weren’t you terribly discouraged?”
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 ma- chine-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 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 book store, 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 our,” 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 mo- rose 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 con- tact 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 pro- duce 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, Dostoevsky, Moliere, 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 benefited 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 Modern 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 down slope. 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 data base, 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 recording 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 in- spire 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 rg64. 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 for 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 said 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 1 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.
That meeting with Paul Dudley White was something of a landmark in my life. It gave me confidence in my rapport with my own body. It reinforced my conviction that the human mind can discipline the body, can set goals for itself, can somehow comprehend its own potentiality and move resolutely forward.
In recounting this episode, I certainly do not intend to suggest that patients with serious heart disease should go against the advice of their doctors. I had Dr. Hitzig’s backing. Besides, there were factors in my case that might not apply to others.
Has my respect for the medical profession diminished as the result of the three episodes~ Just the opposite. The thousands of letters I have received from doctors have demolished any notion that physicians are universally resistant to psychological, moral, or spiritual factors in the healing process. Most doctors recognize that medicine is just as much an art as it is a science and that the most important knowledge in medicine to be learned or taught is the way the human mind and body can summon innermost resources to meet extraordinary challenges.
Some of the letters asked whether I would be able, in the event of another serious illness, to mount the kind of total response that 1 did earlier in my life.
My answer was that I honestly don’t know how many such efforts are possible in a single lifetime. But I know I would certainly try.
I know I have been lucky. My body has already carried me far beyond the point where the medical experts in 1954 thought it would go. According to my calculations, my heart has furnished me with 876, 946, 280 more heartbeats than were thought possible by the insurance doctors.
It was the sheerest of coincidences that, on the tenth anniversary of my 1964 illness, I should happen to meet on the street in New York one of the specialists who had made the melancholy diagnosis of progressive paralysis. He was clearly surprised to see me. I held out my hand. He took it. I didn’t hold back on the handshake. I had a point I wanted to make, and I thought the best way to do so was through a greeting firm enough to make an impression. I increased the pressure until he winced and asked to be released. He said he could tell from my handshake that he didn’t have to ask about my present condition, but he was eager to hear what was behind the recovery.
It all began, I said, when I decided that some experts don’t really know enough to make a pronouncement of doom on a human being. And I said I hoped they would be careful about what they said to others; they might be believed and that could be the beginning of the end.
End
