Days of Grace (36 page)

THE NEWS THAT
I had AIDS hit me hard but did not knock me down. I had read of people committing suicide because of despair caused by infection with HIV. Indeed, in the preceding year, 1987, men suffering from AIDS were 10.5 times more likely to commit suicide than non-HIV-infected people who were otherwise similar to them.

In 1988, the AIDS suicide rate fell, but only to 7.4 times the expected rate. In 1990, it was 6 times the expected rate. The drop continued, but the far greater likelihood of suicide among AIDS patients persists, according to a 1992 issue of the
Journal of the American Medical Association
. (Incidentally, most of the HIV-infected men who kill themselves use prescription drugs to do so, instead of the guns that most male suicides use.) The main reason for the decline in this suicide rate, according to the report, was the general improvement in treatment, including the development of drugs that gave AIDS patients more hope. By 1992, however, the suicide rate was starting to rise again, as many of the therapies for AIDS, including those I was dependent on, began to show their limitations.

For me, suicide is out of the question. Despair is a state of mind to which I refuse to surrender. I resist moods of despondency because I know how they feed upon themselves
and upon the despondent. I fight vigorously at the first sign of depression. I know that some depression can be physically induced, generated by the body rather than the mind. Such depression is obviously hard to contain. But depression caused by brooding on circumstances, especially circumstances one cannot avoid or over which one has no control, is another matter. I refuse to surrender myself to such a depression and have never suffered from it in my life.

Here is an area in which there are very close parallels between ordinary life and world-class athletic competition. The most important factor determining success in athletic competition is often the ability to control mood swings that result from unfavorable changes in the score. A close look at any athletic competition, and especially at facial expressions and body language, reveals that many individuals or even entire teams go into momentary lapses of confidence that often prove disastrous within a game or match. The ever-threatening danger, which I know well from experience, is that a momentary lapse will begin to deepen almost of its own accord. Once it is set in motion, it seems to gather enough momentum on its own to run its course. A few falling pebbles build into an avalanche. The initiative goes to one’s opponent, who seems to be impossibly “hot” or “on a roll”; soon, victory is utterly out of one’s reach. I’ve seen it happen to others on the tennis court; it has sometimes happened to me. In life-threatening situations, such as the one in which I now found myself, I knew that I had to do everything possible to keep this avalanche of deadly emotion from starting. One simply must not despair, even for a moment.

I cannot say that even the news that I have AIDS devastated me, or drove me into bitter reflection and depression even for a short time. I do not remember any night, from that first moment until now, when the thought of my AIDS condition and its fatality kept me from sleeping soundly. The physical discomfort may keep me up now and then, but not the psychological or philosophical discomfort.

I have been able to stay calm in part because my heart condition is a sufficient source of danger, were I to be terrified by illness. My first heart attack, in 1979, could have ended my life in a few chest-ravaging seconds. Both of my heart operations were major surgeries, with the risks attendant on all major surgery. And surely no brain operation is routine. Mainly because I have been through these battles with death, I have lost much of my fear of it.

I was not always that way. I had been a sickly child, but for most of the first thirty-six years of my life, until 1979, I nurtured a sense of myself as indestructible, if not actually immortal. This feeling persisted even after my heel surgery in 1977. For nine years since my first heart attack, however, I had been living with a powerful sense of my own mortality. And I have had many other signs, in the deaths of others, that have led me to think of my own end as something that could be imminent. So AIDS did not devastate me. AIDS was little more than something new to deal with, something new to understand and respond to, something to accept as a challenge, as if I might defeat it.

One can ready oneself for death. I see death as more of a dynamic than a static event. The actual physical manifestation of the absence of life is simply the ultimate step of a process that leads inevitably to that stage. In the interim, before the absolute end, one can do much to make life as meaningful as possible.

What would have devastated me was to discover that I had infected my wife, Jeanne, and my daughter, Camera. I do not think it would make any difference, on this score, whether I had contracted AIDS “innocently” from a blood transfusion or in one of the ways that most of society disapproves of, such as homosexual contacts or drug addiction. The overwhelming sense of guilt and shame would be the same in either case, if I had infected another human being.

A friend of mine has ventured the opinion that much as I love Jeanne, I am truly crazy about Camera. Well, Jeanne loves me, but I think she, too, is truly crazy about Camera. The thought that this beautiful child, not yet two years old,
who has brought more pure joy into our lives than we had ever known before we laid eyes on her, could be infected with this horrible disease, because of me, was almost too much even to think about.

Both Jeanne and Camera were quickly tested. Both, thank God, were found to be free of any trace of HIV. Their testing has continued, and they remain free of infection.

BEFORE I COULD
sort out some of the ideas exploding in my head about AIDS, I had to deal physically with a postoperative problem. Because I am allergic to penicillin, I was given a different antibiotic, one that is sulfur-derived, after I came out of surgery. For some reason, the sulfur crystallized in my system and I developed kidney stones, which were responsible for the most excruciating attack of pain I have ever felt in my life.

Then, just as I was about to celebrate the end of that ordeal, I had a violent reaction to the sulfur derivative. I developed a quite severe case of a condition called Stevens-Johnson Syndrome, which left my entire body looking exactly as if I were ready for the bum unit at New York Hospital. For five days I could neither talk nor eat, because my mouth had become painfully sore.

As soon as I recovered, I turned my attention to the main matter at hand—using all the resources of medical science to hold AIDS at bay. Just as I was girding myself for the battle, I was struck in the face, or so the blow felt. In October 1988, a month after my biopsy and the discovery that I had AIDS, the prestigious magazine
Scientific American
devoted its entire issue to AIDS. One article in particular transfixed me. In it, the author asserted that 90 percent of AIDS patients die within three years of being diagnosed. But my doctors and I had no idea how long I had been suffering with AIDS before my biopsy revealed the presence of toxoplasmosis. How long had the parasite been creating its abscess in my brain?

I couldn’t bring myself to ask my AIDS specialist, Dr. Murray, how much longer I had to live. I asked him
something else. “Will you be able to tell me when I have about three months left?” I estimated that I would need at least three months to put my affairs in ideal order in the event of my death.

“I think you will know as much as I know,” he countered. “After all, both of us will be keeping a close watch on your cell count. Beyond that, we both may be in the dark. We’ll do our best, Arthur.”

I took the
Scientific American
article seriously. As I approached the summer of 1991, or three years after my biopsy, my sense of anxious expectation mounted. Could I make it to Camera’s fifth birthday party, in December 1991? I made it. What about my wedding anniversary, on February 20, 1992? I arranged for dinner reservations and Jeanne and I dined and celebrated. And then came Wimbledon, in June. I was there.

As with other people suffering from a combination of medical problems, I became a professional patient. The most important people in my life outside of my family were Dr. Scheidt, my cardiologist, and Dr. Murray, an infectious-diseases specialist and my AIDS doctor. In fact, I am surrounded by doctors. In the last dozen years, in addition to sundry internists, my cardiologist, and my infectious-disease doctor, I have been treated by a neurologist, a neurosurgeon, a cardiothoracic surgeon, a dermatologist, and a dentist whose other patients are only too keenly aware that he attends to at least one person suffering from AIDS. (My dentist lost almost half of his patients when word got out that he was treating me; fortunately, many later returned.) In addition, as I have mentioned, my close friends Doug Stein and Eddie Mandeville are doctors; and Jeanne’s best friend is an obstetrician-gynecologist whose practice consists almost entirely of indigent women who are HIV-positive.

I was fortunate to have Dr. Murray as my AIDS physician. From the start, he has treated me with utmost respect as a patient. In the enterprise of medicating Arthur Ashe for AIDS, he wanted me to be an active partner. He encouraged
me to read about the disease and all the new medications, and to feel free to say anything I wanted at our sessions together. He never tired of answering my questions, and I had many of them. I know full well that all doctors are not as open-minded. As a board member of the Commonwealth Fund, which specializes in problems involving health, the cities, and the elderly, I have seen studies of patients’ complaints about physicians that list at the absolute top the doctors’ chronic unwillingness to listen to them.

Independent of each other, Dr. Murray and Dr. Scheidt are vital to me. They have had to coordinate their different treatments to be careful that the side effects of certain therapies in one area do not jeopardize my health in another. Although I am aware that the doctor-patient relationship requires some professional distance, I think of these physicians as my friends.

As a patient, I try to do my part as diligently as possible, and especially to take all prescriptions scrupulously, as ordered. For my heart condition, I was taking five medicines every day. I was taking Mevacor, in a bullet-shaped capsule, which reduces cholesterol mainly by influencing the liver not to produce the substance. Another drug was Procardia, a football-shaped pill that is a vasodilator, relaxing and thus dilating the arteries and facilitating blood flow. The third drug was Tenormin, in tablet form, a beta-blocker, which decreases the heart’s need for oxygen. Tenormin, which makes the heart beat slower and softer, is sometimes prescribed to reduce a person’s anxiety level, to calm the patient down. For some athletic competitions, such as the Winter Biathlon, which combines skiing and shooting, it is a banned substance.

As many older men now do, I started taking an aspirin every other day, as a blood thinner and anti-coagulant. I also took nitroglycerin pills and paste, then later wore a time-release nitroglycerin patch on my chest. Nitroglycerin also dilates the arteries. I take daily a large number of natural vitamins. A supply of amyl nitrate, which is a sort of
super-vasodilator, sits in my medicine chest for emergencies; in case of a heart attack, it could save my life.

As for AIDS, the most significant decision facing me and Dr. Murray was whether to take AZT (azidothymidine). Since 1988, AZT has been the outstanding therapy for AIDS. Desperate for an effective medication, doctors had introduced AZT into AIDS therapy only the previous year. To the thousands of persons swept by the first tragic tidal wave of mortality caused by AIDS, AZT was a miracle drug. So urgent was the need for this therapy that the Food and Drug Administration approved its use without requiring the completion of the exacting clinical trials to which all drugs are normally subjected.

AZT never underwent a complete “double-blind” study. I soon heard a story that many patients in the government tests—almost all of them gay men—banded together to disrupt the process in the name of life—their own lives. AZT was being administered to them on a clinical-trial basis, along with placebos. The patients, desperate for a cure, somehow learned to tell the placebos from the AZT pills. They threw out the placebos, divided the AZT pills among themselves, and kept their subterfuge a secret from the scientists and administrators. Nevertheless, the testing was abandoned and the drug rushed into service because it clearly slowed the replication of the virus.

But AZT was controversial in other ways. A gift from heaven to many desperate people, it was poison to others. Developed for use in cancer chemotherapy to destroy cells then in the process of actively dividing, AZT was only later applied to AIDS. Some scientists believe that AZT, which relentlessly kills cells but cannot distinguish between infected and uninfected cells, is as harmful as AIDS itself. After all, HIV is actively present in only 1 of every 10,000 T-cells, which are vital to the immune system; but AZT kills them all. Dr. Peter Duesberg, the once eminent and now controversial professor of molecular and cell biology at the University of California, who bitterly disputes the notion
that HIV causes AIDS, has called AZT “AIDS by prescription.”

Dr. Duesberg argues that the use of recreational drugs, not sex, led to AIDS. It is well known that many gay men used—and many of them continue to use—drugs as a stimulus in sexual activity or to facilitate intercourse. “Natural and synthetic psychoactive drugs,” he has argued (drugs such as cocaine, amphetamines, heroin, Quaaludes, and amyl nitrites and butyl nitrites, or “poppers”), “are the only new pathogens around since the 1970s, and the only new disease syndrome around is AIDS, and both are found in exactly the same populations.”

AZT was approved by the Food and Drug Administration (FDA) for general use in combating the effects of AIDS because AIDS patients were dying fast and the drug helped patients live longer and more endurable lives. Still, it is decidedly not for everyone. Some people tolerate it with relative ease, some only with grave side effects. Some tolerate it for a while, then must give it up. Still others cannot tolerate it at all. To my relief, I tolerate AZT fairly easily.