It started one morning in the spring of 1976. I was twenty-four, and with college and my ROTC active duty out of the way, I had landed my first job, doing economics research in Washington, D.C. I awoke that morning just as the numbers clicked to 6:00 on the digital clock. The room was dark. The windows had no blinds, and only half a sheer curtain hung from the far one.
I lay still for a long time, staring as the black form outside my window slowly turned gray in the gathering light, like a TV image obscured by snow. I tried to be matter-of-fact, as if totally absorbed in the form outside which took on a tinge of green and then the outline of leaves. I finally tried to wiggle my toes. I could tell from the movement of the sheet that I wasn’t paralyzed, just numb. My hands could move too, but the right one wouldn’t close at all, and the left only slightly.
I tried uncrossing my legs and moving my arms to my sides, and slowly sensation returned with a kind of electrical buzz. But my hands still wouldn’t close or make a fist. I remember feeling calm—the way you do when dealing with something serious and permanent—and staring at the black, jointed fingers of the maple branch outside my window.
It was 7:15 when I covered my eyes with one arm, trying to escape, and fell into a dream of myself inside myself, kneeling inside the cavern of my own chest in what seemed like an ancient ritual. I watched the surface of my heart turn red and then come alive with a commercial of my life—like an animated poster for a musical comedy, showing familiar events in miniature around a central figure. The tiny characters moved faster and faster in brilliant color, repeating the words precisely as I had heard them in the scenes of my life but too loud, much too loud.
I awoke after nine and with difficulty dressed and drove into downtown Washington, D.C., to see a doctor. My hands still would not close.
Some maladies are rich and precious and only to be acquired by the right of inheritance or purchased with gold.
—Hawthorne
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It is now over six years later, in December 1982. A severe winter has already settled over Salt Lake City, where my family and my people are observing the celebration of birth and light and where Barney Clark is in the University of Utah Medical Center, tethered to life by a technological wonder. I cannot turn my mind from the suffering of this distant brother, who shares with me only the coincidental—we are both Utah boys who lost a parent in childhood, we were graduated from the same university, his name was my army nickname, and we both have been the objects of medical research.
But he and I are different, as father and son are different. My illness is uncommon, but its course has been ordinary; his is more common, but its course extraordinary. His mechanical heart is symbolic of his generation: through youth during economic collapse and young adulthood in global war, they witnessed America’s rise to preeminence. In the span of their lives, childhood diseases have been conquered and the burdens of age eased. Poised as they were on the upward swing of history, they saw our national dream of progress become reality.
The mechanical heart pounding in Barney Clark’s chest is one more proof of his generation’s truths: America need not give in to disease, age, or infirmity. Good health, strength, and vigor are our manifest destiny, the product of our own ingenuity in a salubrious land, endowed with limitless resources and blessed of God. If we can put a man on the moon, we can cure our earthly ailments. From iron lungs to heart-lung machines, scientific research marches forward. My children will see the Jarvik 7 as my father’s generation saw the Model T, and as we severed the chains of distance, we will loosen the bands of death.
These ideals were heralded once more in the December 14 Wall Street Journal. Barney Clark, the editorial said, “has opened new prospects to us in controlling our own lives.” After reiterating our faith in technology and citing the excitement after the moon walk, the editorial said, “That same window on freedom is the thrill of the artificial heart.” These ideas—that faith in education and personal responsibility, coupled with progress, would assure us good health—constitute the peculiar bequest of Barney Clark’s generation: the American health ethic.
Your old men shall dream dreams, and your young men shall see visions.
—Joel
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I grew up fearing the shots that prevented diseases my grandparents dreaded. When I first saw a hypodermic needle puncture my skin, I broke away and ran from the examining room with half the needle still in my shoulder. By the time I needed a booster, someone had invented a gun to shoot the serum beneath the skin without a needle. And for my last inoculation, I was marched through the school cafeteria and handed a small white cup containing two sugar cubes laced with a painless oral vaccine. That was scientific progress.
My generation was reared in the age of remedies. Doctors filled our TV screens, resolving a weekly medical “situation” with the aid of mood music and a laugh track. These TV cures paralleled our own experience: tonsillectomies ended our tonsillitis; antibiotics cleared our ear infections and our acne; braces straightened our teeth. Although parents and TV announcers extolled the wonders of modern medicine, these cures were ordinary to us, and doctors could call them up with a stroke of the pen on a prescription pad.
Disease was temporary and correctable. When relatives or neighbors came down with something unusual they searched out doctors with unpronounceable specialties. Those with unknown disorders went away to places like Walter Reed and the Mayo Clinic. At worst, they had to wait for a cure.
I recall waiting as a ten-year-old for more than an hour, stripped, as instructed, to my shorts and sitting in a cold cubicle. A shaft of light came in from the window high above the examining table. When I couldn’t sit any longer, I walked around, afraid to touch the instruments or call a nurse. I climbed on the table but couldn’t see out. Finally I returned to my chair, shivering. The shaft of light had moved and now illuminated the room’s one adornment, a sign that said PATIENTS. It had a homonym I learned in school.
Mine was the impatient generation. With after-school snacks, we were fed a constant diet of miraculous cures—itches relieved, headaches gone, colds vanquished. In sixty seconds or less we could watch the potions work, and then we could purchase them ourselves, over the counter. With all the patent medicines available in stores and at home, it was a shame—even a punishment—to go to the doctor. During one visit, after I got into poison oak, I was lectured. “It’s your own fault,” my parents said. “Try to stay well,” said the doctor, as if I had not. The rash spread to places I couldn’t reach to scratch, and the doctor’s prescriptions took days to work. The only thing faster was prevention, and I had learned my lesson.
Preventive medicine is a sort of statistical snake oil, a concoction of equal parts of science and faith. It sets us in optimistic pursuit of the partly full water glass, ignoring the worthlessness of statistical predictions applied to the individual. It pats the well on the back for being well and puts responsibility for sickness on the sick. If we would stop smoking, we would avoid the threat of lung cancer. We face heart disease because we won’t exercise or cut back on cholesterol. We could virtually banish disease if only we would end our lazy, gluttonous ways.
Like my peers, I took preventive medicine seriously. Jogging was shown to improve cardiovascular health; I took it up. The reduced disease rate and the general good health of predominantly Mormon communities in Utah was demonstrated statistically; I kept all my religion’s dietary laws, fasting regularly, eating moderately.
The Mormon health code, called the Word of Wisdom, is specific not only in its prohibitions—no coffee, tea, cigarettes, or alcohol—but also in its promises: “And all saints who remember to keep and do these sayings . . . shall receive health in their navel and marrow to their bones . . . and shall run and not be weary, and shall walk and not faint” (Doctrine & Covenants 89:18, 20). The first question Mormons ask of the sick is: “Did you get a blessing?” In spite of scriptural and pastoral pronouncements that not everyone who receives a blessing is necessarily “sealed up” to good health, the underlying question remains: do you have enough faith to be healed?
A simple cause-effect relation between matters of faith and health is not peculiar to Mormons. The charismatic and fundamentalist Christian religions are pervaded by the belief in recovery by faith. Catholics still make pilgrimages to Lourdes. Even the unchurched are possessed of a secular faith in some means to guard health and cure diseases—wonder drugs, health foods, Oriental treatments.
This eclecticism set in as faith in medical science and technology waned. Preventive medicine turned out to be about as reliable as its fellow oracular sciences, meteorology and economics. If the best science could do was to improve chances, then appeals to anecdotal evidence, to the testimonial, and to any authority could at least do no harm. My freshman class examined meditation; my grandmother grew herbs; a friend praised a new brown-rice diet; and I tried them all.
The nation’s churches, schools, and families urged the health ethic on its children, putting at our disposal what we thought were the means to succeed at good health. My generation reached physical maturity without an inkling that there are human ills without remedy, that time could bring nothing but physical decline.
Never tell people you are ill; never own it to yourself.
—Bulwer-Lytton
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For six months, through the summer and fall of 1976, they said I had lupus erythematosus, the disease that killed Flannery O’Connor. When I tried to peel a cold orange, my hands turned blotchy purple, then cold white. Anything—air conditioning, anxiety, cold sodas—set off the same spasm in the capillaries of my hands and feet. Any part of my body elevated above my heart during sleep would go numb, so I slept flat on my back, legs straight, arms to my sides. When rest was impossible I began to write fictional accounts of my mother’s death, hoping to be immortal in print.
Every other week I went into downtown Washington, D.C., to see a general practitioner—actually three GP’s in a Health Maintenance Organization. The HMO was designed to preserve good health with check-ups and cure ordinary ailments with remedies created from what was on hand, and like my parents, it tried to avoid the expense of outside help. But my case was out of the ordinary. After telephoning a specialist, my doctors started me out on aspirin and began to monitor the emerging symptoms. When the aspirin made me dizzy and nauseated, they phoned the specialist again and then put me on the first of a string of anti-inflammatory drugs, all to no effect.
The pain around my joints increased, and lumps the size of BB’s began to appear. I itched all over, and my scratching opened sores. But there wasn’t much to do after each new drug was started except wait for test results. The rheumatoid factor was always elevated. Meanwhile—since HMO’s were supposed to cut costs by giving well-care at a flat monthly fee—I got plenty of well-care: desensitization shots, antihistamines for my hay fever, paring for my corns, and the like. This assorted treatment didn’t bother me. I assumed plenty of medical attention would make me well again.
But everything became difficult. I couldn’t wash my car. A friend, trying to cheer me at church, shook my hand so firmly I was thrown to the ground. I couldn’t hold hands, so I stopped dating. I couldn’t sit or stand or do anything else for more than a few minutes at a time, and I was always exhausted. When I kept asking for a cure, the HMO threw in a couple of visits to the resident psychologist.
From my experience with the symptoms, I was convinced my physical disease was intricately tied to my mind and emotions. The doctors all dismissed my reports that changes in symptoms paralleled my changing moods. They said the variations occurred in my perception, not in reality. But the effects seemed real. I wanted to discover if something psychological, conscious or obscure, were creating the illness.
Dissatisfied with the HMO counseling, I asked to be referred out—to someone of my own faith. I didn’t anticipate the reaction. After an angry exchange of letters with the HMO director, I was at last released to a traditional insurance program. To get coverage for visits to a psychologist, I first had to see a psychiatrist. I faced the visit with shame, never admitting it to my family, even though the psychiatrist I chose was Mormon. While I hoped he’d understand my dilemma, I feared he’d see the flaws in my faith.
His office, in the basement of his suburban Maryland home, was comfortable and his manner warm. I began to cry uncontrollably, and for forty minutes—until his next patient came—he listened calmly to my crying. Then he ushered me out. I couldn’t stop. I got into my car and began driving aimlessly. People stared at me when I came to stop signs. For two hours I drove and cried.
We have all of us sufficient fortitude to bear the misfortune of others.
—La Rochefoucauld
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I didn’t know that lupus was the latest fad diagnosis among physicians. I didn’t know physicians followed fads. I expected them, as healers, to deal with me whole. But to discover the cures we demand, medicine has relinquished much of its humane role in favor of applied scientific practice, and doctors have limited themselves to narrow specialties. Research and technology require the subdivision of medicine, in order to isolate small, testable phenomena and to identify specific remedies. As medical knowledge expands, the human body is reduced to a bundle of parts to match the medical bureaucracy—first floor podiatry, top floor psychiatry. What we desire, when the physician’s hands touch our faces, is the ancient gesture of healing; what we get, and what the doctor perceives, is otolaryngological palpation.
My doctors were right, perception does affect our reality. Medical practitioners, for example, tend to play down or deny the pain they inflict on humans—pinching and poking us, pricking or puncturing us with needles and instruments. “This won’t hurt,” they say. “You’ll just feel a little pressure.”
Except for the terrain of our skins, we have only the vaguest sense of what our bodies are, of what they contain. Yet Barney Clark’s life is now defined by a part that failed him. He sees the life-giving organ in his mind, but what do his doctors see? Dr. Robert K. Jarvik, who designed the artificial heart, gave a clue when, after Clark was returned to surgery to replace a broken valve, he commented on the data the operation would produce.
Most doctors share a distorted, comic view of the human body. Their jokes about intimate bodily processes, told matter-of-factly, are uniformly crude and demeaning. Doctors may find release in their laughter, but what does it reveal about their perceptions of our bodies? When the question was raised by a group of Salt Lake writers, Jarvik told this story in great detail: at a gathering of friends someone commented that nobody ever saw Jarvik’s body; thereupon, Jarvik stood, removed his clothes, and spent the rest of the evening naked. Only drinkers and doctors—whose perception is altered—could have done so, as Jarvik claimed he did, without blushing.
Is there no connection between the human heartbeat and the human emotion? If Barney Clark, his mechanical pump chugging a steady eighty-five times a minute, were to take his shopping-cart compressor to visit Mormon president and prophet Spencer W. Kimball, would he feel the same thrill other Mormons do? Would a simple adjustment—turning up the pumping rate—do the trick? Even if a racing heart is the product of explainable chemical processes in the brain and nervous system, is it not possible that the sum of this simple chemistry is greater than science can explain?
To view the human body as a mere specimen is to deny the common experience of mankind. The tangible expression of this peculiarly medical view can be observed in the design of doctors’ offices and in the function of hospitals. The odors and echoes of these places lurk with the other horrors of the national unconscious and erupt in private nightmares and feature films, like the suspended victims and stockpiled cadavers of Coma. The fear of medical science is by itself sufficient motive for our urge to succeed at health, and the health ethic is, in part, its product: we hope for cures, and we dread them.
He’s the best physician that knows the worthlessness of the most medicines.
—Benjamin Franklin
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For six weeks, while the fall of 1976 turned to winter, I was told I had scleroderma—chronic and deforming but not fatal unless it attacks the internal organs. This was the diagnosis of a team of rheumatologists affiliated with a medical school in Washington, D.C.
After hearing about my symptoms from a colleague, the specialists took on my case for research and began the entire diagnostic process over again. To take advantage of my recent active duty, they had me file a claim with the Veterans’ Administration, even though I was insured. They wrote prescription orders for experimental drugs from the VA pharmacy, drew blood at the VA hospital for tests run at the medical school, and compiled a bulging medical file while my claim slowly made its way through the VA.
The cold hospital laboratories and offices set off the color changes in my hands, so that the doctors could examine them and bring in colleagues, who would express surprise or nod, recognizing a phenomenon studied in books. Medical students, residents, and interns examined me en masse, and my symptoms were presented at a symposium. I did not have scleroderma, it was decided, but no one knew what I did have.
The research team again tried aspirin, the “drug of choice.” Each week a flat-tipped needle was inserted in each arm to carry blood into two 50-cc plastic syringes, and each week I was weaker. When I insisted the bloodletting was excessive and the aspirin harmful, the researchers urged me to be more cooperative. Once, finding my report of the color and consistency of my stool implausible, the leader of the research team dismissed the testimony of my eyes with, “Patients are poor observers.”
The researchers increased the aspirin dosage each time my strength declined. I began to lose my sense of time. I misplaced things. I couldn’t fill out the forms anymore. Then in an interview the research team leader asked, “Do you take drugs?”
“Well, I take an antihistamine for hay fever.”
“No, I mean drugs.” He motioned to the veins inside his lower arm.
“Oh, drugs. I don’t even drink coffee.”
He was visibly perturbed. “Describe your sex life in the last month.”
“That’s easy, there wasn’t any.”
The doctor was skeptical. “Well, say in the last year or two.”
“I’ve never had sexual relations.”
Clearly annoyed, he explained that my test results were bizarre. Protein was precipitating into my bloodstream, and the analysis suggested I had hepatitis and a venereal disease found in the Philippines and in homosexual communities. If nothing improved by the end of that week, I was to be hospitalized for extensive tests.
These results were a blow that struck me like an accusation of sin. I left the hospital as I had come, knowing something was seriously wrong. I could tell without blood tests that I couldn’t think clearly, that I felt dizzy and weak. While everything else had seemed to be failing, my blood had remained clean. “If I could just keep the use of my hands and my mind,” I began to say to myself.
Four times a day I would arrange the four aspirin tablets, like razor blades or sleeping pills, on the counter. They didn’t upset my stomach—I took them buffered and with food—but I dreaded them. I asked the research rheumatologists to change the medication, but they said I was being too subjective.
Then one night I began to have violent spasms in my back. Every movement, even traveling over the rough roads to the hospital, set off the convulsions. I was embarrassed at my loud, involuntary groaning. The emergency-room doctor joked that I was going through labor and delivery with nothing to show for it, and then he prescribed 40 milligrams of Valium a day—the highest dose commonly given—and sent me back over the bumps of the Metro construction to the home of a friend, where I fainted while trying to get into bed.
Where your treasure is, there will your heart be also.
—Matthew
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My generation has learned to ignore the escalating cost of medicine. In 1950, Americans spent $12.7 billion on health care, 5 percent of the gross national product; by 1980 the bill was $247.2 billion and almost 10 percent of the GNP. So it is easy to skip over the December 16 New York Times report that the National Institutes of Health have “invested” $161 million since 1964 to develop artificial hearts.
The implantation on December 2, 1982 is widely considered a milestone in history, and the Jarvik 7 is an object of national pride—proof that we live in the land of progress. In the history of medical technology, the implant’s predecessor (iron lung, 1928) arrived midway in the decade that saw medical science become effective, with the discovery of insulin (1921), penicillin (1928), and sulfa drugs (c. 1932).
Medical discoveries through the 1950’s benefited a large proportion of the public. Since its appearance in 1949, cortisone has overcome serious setbacks to become a wonder drug on the order of aspirin. I remember frolicking in the irrigation ditch after the Salk vaccine removed my fear of polio. That same year saw the first open-heart surgery. The artificial heart, unlike any previous advance in medical history, came primarily as a result of government intervention, and unlike the dimes we gave to fight polio, the public funds to develop the artificial heart were committed far from their sources.
Like my encounter with medical research, Barney Clark’s treatment is being subsidized. Although we will never know its magnitude, somehow we must be persuaded to examine this and other medical bills. We are fooled by taxes and insurance into believing we don’t pay. We do, and in ways we may not expect.
A normal labor and delivery costs more at the University of Utah Medical Center than at other hospitals in the region without research facilities. Unusual pathology tests are considered routine and justified as part of the hospital’s “research mission.” When the center bills for services never provided and for supplies never received, the patient is responsible for proving an error occurred.
Most patients ignore these charges and pass the bill on to insurance companies, and some insurers would rather pay for errors than challenge the hospitals. When money flows not from one human being with limited resources but from the seemingly endless supply of government and insurance companies, abuse is inevitable.
But physicians are not simply in a bilk-the-consumer scheme. They do keep us waiting and then dispense their cures without much explanation, but for one thing there isn’t time to explain and still carry a patient load large enough to pay off the expenses of getting medical training and setting up a practice. Medical researchers are also on a treadmill, forever in need of more study cases and impressive results to keep the flow of money coming. One researcher in Boston says he pays the bills by running a small business whose product is a new contract or grant every year. The fame achieved by Jarvik—partly because the artificial heart is named for him—will help assure his funding and his position in the research community. By limiting their number and sending medical schools toward the receding horizon of technology, physicians have done only what our national health ethic has demanded.
We may sometimes complain about high doctor bills, but do we ever stop to count the millions wasted on patent medicines? How can we justify what individuals spend on balding alone? What government spends on any illness seems to be related inversely to the aggregate of pain it causes. No society can afford to cure everyone of every malady, but ours tries.
Ten years ago a National Heart and Lung Institute panel on ethics centered its attention not on whether the artificial heart should be implanted at all but on how to distribute the devices justly among the 17,000 to 50,000 potential recipients. Because each taxpayer contributes, each has a legitimate claim on the technology, but even at 1972 prices, installing all those pumps would have cost $1.25 billion. God and nature may not endow mankind with a right to health care, but the U.S. government will try.
The relative cost of many simple remedies has escalated because government intervened to build more hospitals than we need and to fund research not into the cures we need most but into the cures most attractive to science and research, cures with the star qualities of an artificial heart. The higher good is served when rare and costly cures are exposed to the rigors of a world of scarcity. To do so requires that we achieve a degree of contentment with a truth higher than our national health ethic: that we all must fail and die.
Health is not a condition of matter, but of mind.
—Mary Baker Eddy
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On valium my life was reduced to the essence. I was awakened when meals were brought, but I don’t recall what, if anything, I ate. In a moment of determination, I called up every energy and by concentrating made it to and from the bathroom. But I can remember doing it only once. I also remember exerting the entire force of my will while being brought up to the living room and propped up on the sofa, but I was unable to hang on long enough to hear the carolers who had come to sing. I felt glad for these moments, but I was never lucid. As time passed, my periods of consciousness were fewer, and each time I had to work harder to become even partially aware. I felt no pain, but I was terrified each time I began to lapse back into unconsciousness. I could only start to cry before I sank again.
The return to consciousness produced the strangest emotions. I remember that my eyes opened, and I was awake suddenly, without effort. My friend was looking over me, and I felt a profound gratitude. As I was able to do ordinary things, I sensed the air around me, holding me, and I felt loved. I saw trees as I had in early childhood, like fellow beings. I felt a kinship with my house and with familiar surroundings.
After watching me decline, my friend had disobeyed the doctor’s orders, taking me off the Valium and the aspirin. I ached and was stiff again, and I counted it a kindness. The chief rheumatologist did not appreciate being countermanded, and he instructed me to reinstate the aspirin regimen. I was reluctant so he left it up to me—I could take the medicine and receive the benefits of his scientific knowledge, or I could leave both behind.
That Sunday the sun poured through the colonial window panes of the Arlington Ward meetinghouse as I took part in the monthly fast and offering to feed the poor. Sitting on the hard pew, I shed my belief, in a moment of spiritual epiphany, that faith nurtures health, and I took in its place a belief that faith nurtures life, of which disease and death are part. I then resolved to take no more aspirin, because I knew from experience that it was harmful to me. In that moment, medicine was suddenly thrown into the glare of analysis and skepticism.
I was hopeful but not very confident, and I knew I still needed medical care. I called the hospital the next day, afraid to confess what I had done. Without saying hello the doctor asked if I had received his message, and his voice conveyed the urgency: “Get off the aspirin.” He explained it was acting as a toxin, producing the disturbing blood results, the mental disorientation, and the muscle spasms.
The news liberated me. I began to contemplate a life not of health temporarily lost but of chronic illness. Continued full-time economics research was out of the question, so I decided to go back to Utah to study something with a part-time future. The rheumatologists first urged me to stay in Washington, then recommended I go to their colleagues at the University of Utah Medical Center, where research was advancing in diseases like mine. I wasn’t interested.
When life is curtailed, we are left with symbols and gestures, and perhaps my return to Utah was symbolic. I was turning my back on cures, on the hope of good health, and on medical science as healing. I had seen enough of medical research to know that it could take over my life, and I was no longer interested in immediate relief, or a complete cure, or even a diagnosis. I wanted to live quietly, at a prudent distance from medicine, even if it meant suffering more or dying sooner.
Desperate diseases require desperate remedies.
—English Proverb
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When he signed the consent form just before surgery, Barney Clark is reported to have joked about backing out and the long faces it would produce. When he lapsed into semi-consciousness after suffering a series of seizures, his doctors prescribed a form of chicken soup and urged family members to touch him. His first words, when he returned to consciousness two weeks later, were whispered to bionics pioneer Willem Kolff: Don’t quit. Don’t give up.
The story of Barney Clark and his doctors illustrates every contradiction created by our national health ethic. There are no bad guys, no Superman, no kryptonite. The story is striking in its humanity. These weeks of extended life, even when measured only in Clark’s moments of alertness, are a great gift, a miracle.
Humans are the only actors in this miracle play, even if they do get upstaged by one of the props. The human heart is the center of life, a literary, religious, and cultural symbol. What can be said of a man-made pump that expels blood by inflating eighty or ninety times a minute? It is ingenious and fascinating, but it is not greater than its plastic chambers, tubes, and compressor. It is a machine, not a miracle, notwithstanding the enthusiasm of the media.
A mechanical heart may be amazing, but it is also repulsive. We are drawn to it just as we stare at amputees and their artificial limbs and at the plastic facial inserts of cancer victims. These things awe and repel us because they hold out the hope of freedom and immortality while they remind us that we will die—and death will be painful.
All medicine has the same strange attraction. Like their Austrian forerunner, Mesmer, physicians can hold us in full sway, controlling our moods, nursing our fears and our hopes with silence. Consider the thousands now sitting in reception rooms, like the tormented waiting for Jesus to pass. Witness the sick gathering in California to wait on physicians doing research on interferon, the families making pilgrimages to Virginia for test-tube babies, the old sacrificing their savings on a trip to Mexico for Laetrile, and now the diseased filing suit in Utah for artificial hearts. Families sell their homes and travel from Maine to California to queue up for heart transplants at Stanford. Their lives become defined by their diseases, as if nothing else mattered. And who will blame them? If their bodies are objects only, they ought to fix or replace the defective components. If health is their right, they ought not be deterred from claiming it.
Perhaps my imagination is too lively, but I believe that if Barney Clark were to live, for years let’s say, he would come to revile the chugging shopping-cart compressor, regardless of his public statements. For Clark, connected to a machine, technical progress has become a necessity, rather than the vague hope it is for the rest of us. The December 16 New York Times editorial argued that artificial heart implants should have waited for progress on a portable unit. To prolong life without “reasonable quality,” the Times said, is to succeed “only in prolonging death.”
Clark’s compressor came equipped with a key that allows him or his attendant to turn off the backup unit. This so-called suicide key is paradoxical. Life-support systems are the result of our efforts to bring our physical fate under the control of the human will, but once a machine is attached, the human will is subject, just as it is subject to the physical body. Our response is the popular notion expressed in the Times: that we have a right to a “reasonable quality” of life—a right to health—and that in the absence of health we have a right to choose death—a right to die.
These ideas, given currency by the right-to-death movement, fly in the face of ordinary experience. Life is its own imperative; it goes on without regard to quality; and death, prolonged or sudden, is part of living, too. We may have natural rights, but the right to health and the right to die are not among them.
Faced with capricious nature and our inclination to hope, we are hard pressed to resist the technological stop-gap. Even the benign Mormon view of death, as a passage home to waiting loved ones, is no defense. Was Barney Clark’s decision an acquiescence in pressure from his doctors? A final lunge at celebrity? A response conditioned by his profession or his time? If he were to live long enough to write his memoirs (as the sick are inclined to do), I believe he would say that any life is worth living, even a life of chronic illness and pain, with its unpredictable setbacks. For me it is. Perhaps that faith is the miracle.
What happiness is there which is not purchased with more or less of pain?
—Margaret Oliphant
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In December 1976, I left Washington to go back to school in Utah. At Brigham Young University, I had student health insurance; so when a lump the size of a large marble grew in front of one ear, I was covered. The doctor said it was a lymph node (it wasn’t), and he put off tests while he sent for my records. By the time the lump went away, the HMO, the medical school, and the VA hospital in Washington had replied that there were no medical files on me—no appointment records, no prescription numbers, no evidence of lab work, and no report of the symposium where my case was presented. The VA sent a standard form rejecting my claim and said the records upon which the decision was based had been lost. I was perfectly healthy, as far as anyone knew.
Rather than try to persuade the student clinic to keep me on the new drug my doctors in Washington had prescribed, I cut back on the dosage as my supply dwindled. Each reduction put me in bed for a week, so I timed it for a school holiday. Six months later I was completely weaned and feeling no worse. I was also a dropout.
I had requested that a six-hour test required for the master’s degree be waived or altered. Sustained typing—even sitting that long—would set off spasms in my back, and stress would bring on spasms in my circulation. After I had completed the project and all the coursework for the degree, my request was denied. The department chairman stated that the exam was designed to induce stress—that the ability to withstand stress was a goal of education. As for my physical discomfort, he suggested I wait until I was sufficiently recovered to sit through the exam, as if I could will the disease into remission.
Out of school, I began looking for work. Interviews always went well until I mentioned my illness. A private firm and a federal agency withdrew job offers after personnel officers discovered their rules would not permit flexible working hours. When I decided to start my own business, I found the banks wary. To get a loan, I had to have a job. An official from the Small Business Administration told me that I couldn’t get a disability loan for typesetting equipment unless I proved I was too disabled to use it.
I was also ineligible for group health insurance, and working as a part-time editor and freelance graphic designer, I couldn’t afford the premiums for an individual policy. The lumps on my face came painlessly, one at a time, and left me, dizzy and fevered, a few weeks later. One doctor said it was cancer, but I was skeptical. Since I was forced to buy medical treatment myself, I shopped around and then analyzed each doctor’s ideas. I was in no hurry. With time I was able to reduce my dependence on doctors by observing carefully the responses of my symptoms to changes they suggested in my life.
I learned to maintain a careful rhythm and variety in my activities, to allow for more rest and less physical exertion. I ate less. I learned to sleep intermittently for ten hours a day, and my slow range-of-motion stretching could hardly be called exercise. I learned to wear gloves and a hat from September to May, even though people stared. At other people’s houses, I learned to ask for milk to clear my head and for hot water to warm my hands, usually at awkward moments. I learned to use nasal ointments, substitute saliva, and artificial tears.
Scientific evidence, doctors warned me, indicated that having a family would make the disease worse. Small children who are building immunity—as well as large groups of people at church or other meetings—would endanger my immune-deficient system. I wanted to avoid taking needless risks, but I needed more than the life that the strictest caution would allow. I didn’t want the disease to take over yet.
I chose to cut back my church attendance; I couldn’t sit comfortably through a meeting anyway. Since my unpredictable health made me unreliable for regular church work, my reduced attendance raised questions. Had a loss of faith made me “inactive”?
I wore a lump on one side of my face for my wedding pictures and then fathered three children in four years, spacing them closely so they would expose me to contagion for fewer years. When each child came I became sicker under the added workload, but then my capacity gradually increased. After the second child arrived, I felt strong enough to tackle the six-hour exam and pass.
Of the three syndromes so far identified with my illness, two get worse when it’s cold, one when it’s hot; one gets worse when it’s damp, another when it’s dry. No climate can accommodate them all. When a job offer came from New Hampshire, one doctor warned against moving to New England, but the medical evidence was not clear-cut. After five years of learning to handle longer workdays, I felt ready to accept a teaching job.
A life with disease must be measured out, and I am stingy. Most people can’t see anything wrong with me, and they find my behavior strange. Some act suspicious, as if I had joined the sickies and complainers in a plot to take advantage. Others become agitated with overconcern, disrupting ordinary social affairs with vague offers of help. Although medical history has recorded only three hundred cases like mine, everybody I meet seems to have heard of somebody who found a cure—drinking a solution of aloe jelly or Basic H, undergoing electric-current treatments while submerged, or something equally bizarre involving water. Some people put on a severe aspect, refusing to acknowledge my ill health. Others urge me to go on disability or become an activist, but I am not part of a minority. By middle age, we all have something—at thirty, as one acquaintance put it, the warranty runs out. Like health, disease can be a way of life, and it will be for most of us.
A sound mind in a sound body is a thing to be prayed for.
—Juvenal
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It has been six months since my last bout with my illness. The Utah summer was especially hot and dry, and even with all my ointments, drops, and humidifiers, I again came down with a sort of acute mumps. Within four hours the glands were swollen and hot and my face misshapen. The pain was like the sting citrus brings to the corners of the mouth, and like the pang that squeals audibly as air is forced into the cheek from blowing a balloon too hard. No, it was much worse—and sustained. Analgesics couldn’t relieve the pressure, and the antibiotics that had worked the last time failed. The doctor tried stronger antibiotics with a broader spectrum and larger doses. Still in pain, I called in the bishop and cried and swore and asked him for a blessing.
The pain went on for a week. The doctor tried the strongest antibiotic he could find and started cortisone therapy—massive doses to start, then tapering off for six days. The form of the drug was new. Instead of a needle and syringe, someone had invented an oral cortisone—tiny oblong pills arranged neatly by daily dose in a bubble pack. The pain was gone in two days, the pressure in a week, but the leathery gland didn’t go down for a month.
I don’t mean to make much of my illness, but I am only thirty. At times I feel trapped, too tired to go on facing the constant discomfort and the unexpected reversals. At times I get angry, when I see that my family must do without, that I will always be a burden. Then I remember falling into a strange sleep, lying as I do on my back, like a corpse under the sheets. I was in a large, ornate room with a man I identified as a father and with others who were my peers. We were all aware that I was going to die. I was dressed in red robes that were heavy with decoration. The others wore blue and green. I fell down crying, afraid to die. “Please don’t let it be painful,” I said.
The others began to leave, as if I were already dead, but I managed somehow to stand again, steadying myself against the wall and trying to look defiant. The others were surprised. I then turned and saw my face reflected in a mirror. I was young. A momentary unconsciousness blinded me, and then I saw my face reflected again, like a mask, before it faded. I was gone—absorbed or vanished into featureless white—for how long I don’t know.
I became aware, first of the warmth of my body, then of the stiffness from lying too long—on my right side, my arms crossed on my chest and my legs doubled. I felt my breathing and the dryness of my throat and mouth. I got up, saw my sleeping wife, and heard my son’s murmuring. I felt no joy.
I still remember that interlude of oblivion, when discomfort was absent. But I’m not afraid of discomfort; I’m not afraid to live or to die. What frightens me is pain—I wish it weren’t such a sure thing. But it is.
