Anatomy of an Illness as Perceived by the Patient
Reflections on Healing and Regeneration
For my brother Robert and
my sisters Sophie and Jeanne.
CONTENTS
1. Anatomy of an Illness as Perceived by the Patient
2. The Mysterious Placebo
3. Creativity and Longevity
4. Pain Is Not the Ultimate Enemy
5. Holistic Health and Healing
6. What I Learned from Three Thousand Doctors
BIBLIOGRAPHY
ACKNOWLEDGMENTS
A BIOGRAPHY OF NORMAN COUSINS BY SARAH COUSINS SHAPIRO
ONE
ANATOMY OF AN ILLNESS AS PERCEIVED BY THE PATIENT
This book is about a serious illness that occurred in 1964. I was reluctant to write about it for many years because I was fearful of creating false hopes in others who were similarly afflicted. Moreover, I knew that a single case has small standing in the annals of medical research, having little more than “anecdotal” or “testimonial” value. However, references to the illness surfaced from time to time in the general and medical press. People wrote to ask whether it was true that I “laughed” my way out of a crippling disease that doctors believed to be irreversible. In view of those questions, I thought it useful to provide a fuller account than appeared in those early reports.
In August 1964, I flew home from a trip abroad with a slight fever. The malaise, which took the form of a general feeling of achiness, rapidly deepened. Within a week it became difficult to move my neck, arms, hands, fingers, and legs. My sedimentation rate was over 80. Of all the diagnostic tests, the “sed” rate is one of the most useful to the physician. The way it works is beautifully simple. The speed with which red blood cells settle in a test tube—measured in millimeters per hour—is generally proportionate to the severity of an inflammation or infection. A normal illness, such as grippe, might produce a sedimentation reading of, say, 30 or even 40. When the rate goes well beyond 60 or 70, however, the physician knows that he is dealing with more than a casual health problem. I was hospitalized when the sed rate hit 88. Within a week it was up to 115, generally considered to be a sign of a critical condition.
There were other tests, some of which seemed to me to be more an assertion of the clinical capability of the hospital than of concern for the well-being of the patient. I was astounded when four technicians from four different departments took four separate and substantial blood samples on the same day. That the hospital didn’t take the trouble to coordinate the tests, using one blood specimen, seemed to me inexplicable and irresponsible. Taking four large slugs of blood the same day even from a healthy person is hardly to be recommended. When the technicians came the second day to fill their containers with blood for processing in separate laboratories, I turned them away and had a sign posted on my door saying that I would give just one specimen every three days and that I expected the different departments to draw from one vial for their individual needs.
I had a fast-growing conviction that a hospital is no place for a person who is seriously ill. The surprising lack of respect for basic sanitation; the rapidity with which staphylococci and other pathogenic organisms can run through an entire hospital; the extensive and sometimes promiscuous use of X-ray equipment; the seemingly indiscriminate administration of tranquilizers and powerful painkillers, sometimes more for the convenience of hospital staff in managing patients than for therapeutic needs; and the regularity with which hospital routine takes precedence over the rest requirements of the patient (slumber, when it comes for an ill person, is an uncommon blessing and is not to be wantonly interrupted)—all these and other practices seemed to me to be critical shortcomings of the modern hospital.
Perhaps the hospital’s most serious failure was in the area of nutrition. It was not just that the meals were poorly balanced; what seemed inexcusable to me was the profusion of processed foods, some of which contained preservatives or harmful dyes. White bread, with its chemical softeners and bleached flour, was offered with every meal. Vegetables were often overcooked and thus deprived of much of their nutritional value. No wonder the 1969 White House Conference on Food, Nutrition, and Health made the melancholy observation that a great failure of medical schools is that they pay so little attention to the science of nutrition.
My doctor did not quarrel with my reservations about hospital procedures. I was fortunate to have as a physician a man who was able to put himself in the position of the patient. Dr. William Hitzig supported me in the measures I took to fend off the random sanguinary assaults of the hospital laboratory attendants.
We had been close friends for more than twenty years, and he knew of my own deep interest in medical matters. We had often discussed articles in the medical press, including the New England Journal of Medicine (NEJM), and Lancet. He was candid with me about my case. He reviewed the reports of the various specialists he had called in as consultants. He said there was no agreement on a precise diagnosis. There was, however, a consensus that I was suffering from a serious collagen illness—a disease of the connective tissue. All arthritic and rheumatic diseases are in this category. Collagen is the fibrous substance that binds the cells together. In a sense, then, I was coming unstuck. I had considerable difficulty in moving my limbs and even in turning over in bed. Nodules appeared on my body, gravel-like substances under the skin, indicating the systemic nature of the disease. At the low point of my illness, my jaws were almost locked.
Dr. Hitzig called in experts from Dr. Howard Rusk’s rehabilitation clinic in New York. They confirmed the general opinion, adding the more particularized diagnosis of ankylosing spondylitis, which would mean that the connective tissue in the spine was disintegrating.
I asked Dr. Hitzig about my chances for full recovery. He leveled with me, admitting that one of the specialists had told him I had one chance in five hundred. The specialist had also stated that he had not personally witnessed a recovery from this comprehensive condition.
All this gave me a great deal to think about. Up to that time, I had been more or less disposed to let the doctors worry about my condition. But now I felt a compulsion to get into the act. It seemed clear to me that if I was to be that one in five hundred I had better be something more than a passive observer.
I asked Dr. Hitzig about the possible origin of my condition. He said that it could have come from any one of a number of causes. It could have come, for example, from heavy-metal poisoning, or it could have been the aftereffect of a streptococcal infection.
I thought as hard as I could about the sequence of events immediately preceding the illness. I had gone to the Soviet Union in July 1964 as chairman of an American delegation to consider the problems of cultural exchange. The conference had been held in Leningrad, after which we went to Moscow for supplementary meetings. Our hotel was in a residential area. My room was on the second floor. Each night a procession of diesel trucks plied back and forth to a nearby housing project in the process of round-the-clock construction. It was summer, and our windows were wide open. I slept uneasily each night and felt somewhat nauseated on arising. On our last day in Moscow, at the airport, I caught the exhaust spew of a large jet at point-blank range as it swung around on the tarmac.
As I thought back on that Moscow experience, I wondered whether the exposure to the hydrocarbons from the diesel exhaust at the hotel and at the airport had anything to do with the underlying cause of the illness. If so, that might account for the speculations of the doctors concerning heavy-metal poisoning. The trouble with this theory, however, was that my wife, who had been with me on the trip, had no ill effects from the same exposure. How likely was it that only one of us would have reacted adversely?
It seemed to me, as I thought about it, that there were two possible explanations for the different reactions. One had to do with individual allergy. The second was that I could have been in a condition of adrenal exhaustion and less apt to tolerate a toxic experience than someone whose immunologic system was fully functional.
Was adrenal exhaustion a factor in my own illness?
Again, I thought carefully. The meetings in Leningrad and Moscow had not been casual. Paperwork had kept me up late nights. I had ceremonial responsibilities. Our last evening in Moscow had been, at least for me, an exercise in almost total frustration. A reception had been arranged by the chairman of the Soviet delegation at his dacha, located thirty-five to forty miles outside the city. I had been asked if I could arrive an hour early so that I might tell the Soviet delegates something about the individual Americans who were coming to dinner. The Russians were eager to make the Americans feel at home, and they had thought such information would help them with the social amenities.
I was told that a car and driver from the government automobile pool in Moscow would pick me up at the hotel at 3:30 P.M. This would allow ample time for me to drive to the dacha by 5:00, when all our Russian conference colleagues would be gathered for the social briefing. The rest of the American delegation would arrive at the dacha at 6:00 P.M.
At 6:00, however, I found myself in open country on the wrong side of Moscow. There had been a misunderstanding in the transmission of directions to the driver, the result being that we were some eighty miles off course. We finally got our bearings and headed back to Moscow. Our chauffeur had been schooled in cautious driving; he was not disposed to make up lost time. I kept wishing for a driver with a compulsion to prove that auto racing, like baseball, originally came from the U.S.S.R.
We didn’t arrive at the dacha until 9:00 P.M. My host’s wife looked desolate. The soup had been heated and reheated. The veal was dried out. I felt pretty wrung out myself. It was a long flight back to the States the next day. The plane was overcrowded. By the time we arrived in New York, cleared through the packed customs counters, and got rolling back to Connecticut, I could feel an uneasiness deep in my bones. A week later I was hospitalized.
As I thought back on my experience abroad, I knew that I was probably on the right track in my search for a cause of the illness. I found myself increasingly convinced, as I said a moment ago, that the reason I was hit hard by the diesel and jet pollutants, whereas my wife was not, was that I had had a case of adrenal exhaustion, lowering my resistance.
Assuming this hypothesis was true, I had to get my adrenal glands functioning properly again and to restore what Walter B. Cannon, in his famous book, The Wisdom of the Body, called homeostasis.
I knew that the full functioning of my endocrine system—in particular the adrenal glands—was essential for combating severe arthritis or, for that matter, any other illness. A study I had read in the medical press reported that pregnant women frequently have remissions of arthritic or other rheumatic symptoms. The reason is that the endocrine system is fully activated during pregnancy.
How was I to get my adrenal glands and my endocrine system, in general, working well again?
I remembered having read, ten years or so earlier, Hans Selye’s classic book, The Stress of Life. With great clarity, Selye showed that adrenal exhaustion could be caused by emotional tension, such as frustration or supressed rage. He detailed the negative effects of the negative emotions on body chemistry.
The inevitable question arose in my mind: what about the positive emotions? If negative emotions produce negative chemical changes in the body, wouldn’t the positive emotions produce positive chemical changes? Is it possible that love, hope, faith, laughter, confidence, and the will to live have therapeutic value? Do chemical changes occur only on the downside?
Obviously, putting the positive emotions to work was nothing so simple as turning on a garden hose. But even a reasonable degree of control over my emotions might have a salutary physiologic effect. Just replacing anxiety with a fair degree of confidence might be helpful.
A plan began to form in my mind for systematic pursuit of the salutary emotions, and I knew that I would want to discuss it with my doctor. Two preconditions, however, seemed obvious for the experiment. The first concerned my medication. If that medication were toxic to any degree, it was doubtful whether the plan would work. The second precondition concerned the hospital. I knew I would have to find a place somewhat more conducive to a positive outlook on life.
Let’s consider these preconditions separately.
First, the medication. The emphasis had been on pain-killing drugs—aspirin, phenylbutazone (butazolidine), codeine, colchicine, sleeping pills. The aspirin and phenylbutazone were antiinflammatory and thus were therapeutically justifiable. But I wasn’t sure they weren’t also toxic. It developed that I was hypersensitive to virtually all the medication I was receiving. The hospital had been giving me maximum dosages: twenty-six aspirin tablets and twelve phenylbutazone tablets a day. No wonder I had hives all over my body and felt as though my skin were being chewed up by millions of red ants.
It was unreasonable to expect positive chemical changes to take place so long as my body was being saturated with, and toxified by, pain-killing medications. I had one of my research assistants at the Saturday Review look up the pertinent references in the medical journals and found that drugs like phenylbutazone and even aspirin levy a heavy tax on the adrenal glands. I also learned that phenylbutazone is one of the most powerful drugs being manufactured. It can produce bloody stools, the result of its antagonism to fibrinogen. It can cause intolerable itching and sleeplessness. It can depress bone marrow.
Aspirin, of course, enjoys a more auspicious reputation, at least with the general public. The prevailing impression of aspirin is that it is not only the most harmless drug available but also one of the most effective. When I looked into research in the medical journals, however, I found that aspirin is quite powerful in its own right and warrants considerable care in its use. The fact that it can be bought in unlimited quantities without prescription or doctor’s guidance seemed indefensible. Even in small amounts, it can cause internal bleeding. Articles in the medical press reported that the chemical composition of aspirin, like that of phenylbutazone, impairs the clotting function of platelets, disc-shaped substances in the blood.
It was a mind-boggling train of thought. Could it be, I asked myself, that aspirin, so universally accepted for so many years, was actually harmful in the treatment of collagen illnesses such as arthritis?
The history of medicine is replete with accounts of drugs and modes of treatment that were in use for many years before it was recognized that they did more harm than good. For centuries, for example, doctors believed that drawing blood from patients was essential for rapid recovery from virtually every illness. Then, midway through the nineteenth century, it was discovered that bleeding served only to weaken the patient. King Charles II’s death is believed to have been caused in part by administered bleedings. George Washington’s death was also hastened by the severe loss of blood resulting from this treatment.
Living in the second half of the twentieth century, I realized, confers no automatic protection against unwise or even dangerous drugs and methods. Each age has had to undergo its own special nostrums. Fortunately, the human body is a remarkably durable instrument and has been able to withstand all sorts of prescribed assaults over the centuries, from freezing to animal dung.
Suppose I stopped taking aspirin and phenylbutazone? What about the pain? The bones in my spine and practically every joint in my body felt as though I had been run over by a truck.
I knew that pain could be affected by attitudes. Most people become panicky about almost any pain. On all sides they have been so bombarded by advertisements about pain that they take this or that analgesic at the slightest sign of an ache. We are largely illiterate about pain and so are seldom able to deal with it rationally. Pain is part of the body’s magic. It is the way the body transmits a sign to the brain that something is wrong. Leprous patients pray for the sensation of pain. What makes leprosy such a terrible disease is that the victim usually feels no pain when his extremities are being injured. He loses his fingers or toes because he receives no warning signal.
I could stand pain so long as I knew that progress was being made in meeting the basic need. That need, I felt, was to restore the body’s capacity to halt the continuing breakdown of connective tissue.
There was also the problem of the severe inflammation. If we dispensed with the aspirin, how would we combat the inflammation? I recalled having read in the medical journals about the usefulness of ascorbic acid in combating a wide number of illnesses—all the way from bronchitis to some types of heart disease. Could it also combat inflammation? Did vitamin C act directly, or did it serve as a starter for the body’s endocrine system—in particular, the adrenal glands? Was it possible, I asked myself, that ascorbic acid had a vital role to play in “feeding” the adrenal glands?
I had read in the medical press that vitamin C helps to oxygenate the blood. If inadequate or impaired oxygenation was a factor in collagen breakdown, couldn’t this circumstance have been another argument for ascorbic acid? Also, according to some medical reports, people suffering from collagen diseases are deficient in vitamin C. Did this lack mean that the body uses up large amounts of vitamin C in the process of combating collagen breakdown?
I wanted to discuss some of these ruminations with Dr. Hitzig. He listened carefully as I told him of my speculations concerning the cause of the illness, as well as my layman’s ideas for a course of action that might give me a chance to reduce the odds against my recovery.
Dr. Hitzig said it was clear to him that there was nothing undersized about my will to live. He said that what was most important was that I continue to believe in everything I had said. He shared my excitement about the possibilities of recovery and liked the idea of a partnership.
Even before we had completed arrangements for moving out of the hospital we began the part of the program calling for the full exercise of the affirmative emotions as a factor in enhancing body chemistry. It was easy enough to hope and love and have faith, but what about laughter? Nothing is less funny than being flat on your back with all the bones in your spine and joints hurting. A systematic program was indicated. A good place to begin, I thought, was with amusing movies. Allen Funt, producer of the spoofing television program “Candid Camera,” sent films of some of his CC classics, along with a motion-picture projector. The nurse was instructed in its use. We were even able to get our hands on some old Marx Brothers films. We pulled down the blinds and turned on the machine.
It worked. I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep. When the pain-killing effect of the laughter wore off, we would switch on the motion-picture projector again, and, not infrequently, it would lead to another pain-free sleep interval. Sometimes, the nurse read to me out of a trove of humor books. Especially useful were E. B. and Katharine White’s Subtreasury of American Humor and Max Eastman’s The Enjoyment of Laughter.
How scientific was it to believe that laughter—as well as the positive emotions in general—was affecting my body chemistry for the better? If laughter did in fact have a salutary effect on the body’s chemistry, it seemed at least theoretically likely that it would enhance the system’s ability to fight the inflammation. So we took sedimentation rate readings just before as well as several hours after the laughter episodes. Each time, there was a drop of at least five points. The drop by itself was not substantial, but it held and was cumulative. I was greatly elated by the discovery that there is a physiologic basis for the ancient theory that laughter is good medicine.
There was, however, one negative side-effect of the laughter from the standpoint of the hospital. I was disturbing other patients. But that objection didn’t last very long, for the arrangements were now complete for me to move my act to a hotel room.
One of the incidental advantages of the hotel room, I was delighted to find, was that it cost only about one-third as much as the hospital. The other benefits were incalculable. I would not be awakened for a bed bath or for meals or for medication or for a change of bed sheets or for tests or for examinations by hospital interns. The sense of serenity was delicious and would, I felt certain, contribute to a general improvement.
What about ascorbic acid and its place in the general program for recovery? In discussing my speculations about vitamin C with Dr. Hitzig, I found him completely open-minded on the subject, although he told me of serious questions that had been raised by scientific studies. He also cautioned me that heavy doses of ascorbic acid carried some risk of renal damage. The main problem right then, however, was not my kidneys; it seemed to me that, on balance, the risk was worth taking. I asked Dr. Hitzig about previous recorded experience with massive doses of vitamin C. He ascertained that at the hospital there had been cases in which patients had received up to 3 grams by intramuscular injection.