by Arthur Ashe
I laughed, a nervous laugh. Right, I thought to myself, we can wait, and watch the entire arm go dead. Then the rest of me. “What’s the other option?”
“On the other hand, we could go in right now. As soon as possible. That way, we would know exactly what we are dealing with. And we can get as much of the infected tissue out as we can.”
“Let’s go in,” I said.
I did not hesitate in making that decision. Nevertheless, the next day I had an MRI at St. Agnes Diagnostic Center in White Plains, Westchester. Then I sought a second opinion, based on the CAT scan and the MRI, at Brunswick Hospital in Amityville, Long Island. The new experts told me nothing different; all agreed that surgery was necessary.
This would be the fourth operation of my life. The first, in 1977, had been comparatively minor, on my heel. The second had been major—my quadruple-bypass in December 1979, after my heart attack the previous July. The third had been my corrective double-bypass in June 1983. Now, new ground: brain surgery.
My thoughts about the U.S. Open tournament vanished from my mind. Although I had work to do there and columns to write for the Washington Post, none of that mattered now; they would be put on hold. On Wednesday, August 31, I checked into New York Hospital for a fresh battery of tests, including a spinal tap and a blood test. On Friday, the results came back. Jeanne, Doug Stein, and Eddie Mandeville were with me when I heard the bad news. In fact, they gave it to me. I was HIV-positive.
None of the physicians at the hospital had wanted the grim task of informing me, so they passed the word to Eddie Mandeville, who had been visiting me every day and, as a physician, had become entirely familiar with my case. Eddie told Doug, who is also a doctor, and the two of them waited for Jeanne to arrive that day at the hospital before letting her know.
“What does this mean about Jeanne?” I asked. She reached out quickly, put her left arm around my shoulders, and squeezed my hand hard. “You and me, babe,” she said. “You and me.” She herself had yet to be tested for HIV.
We immediately traced the infection back to the two units of transfused blood after my second heart-bypass operation, in 1983. The most recent medical data had indicated that the HIV virus could stay dormant for years after infecting one, then surface in the form of an opportunistic infection. A brain operation would ascertain if I had such an infection.
On Thursday, September 8, Dr. Patterson performed the operation, which lasted about forty-five minutes. Brain operations are delicate but typically do not last long. When I regained consciousness after the operation, I felt far better than after my heart surgeries. Post-operative pain can be quite substantial, and I was certainly groggy. But compared to the way I felt after my second heart operation, I was fine. Although my head was heavily bandaged, and I was receiving fluids intravenously, I felt very little discomfort.
The first report I received was encouraging. I did not have a brain tumor but rather an infection of some kind. The operation was a success, in that Dr. Patterson had removed all traces of the infection. Part of this matter was sent at once to the laboratory for a biopsy.
The following day, the results came back. Jeanne was with me in my hospital room when Dr. Patterson informed us that the infection was toxoplasmosis. When he gave us the news, I remember Jeanne taking my hand and squeezing it hard and long, as if she would never let it go, just as she had done when I heard the news of my HIV infection. Toxoplasmosis, which used to occur infrequently, had become notorious as one of the specific diseases that—in conjunction with the presence of HIV—marked the condition known as Acquired Immune Deficiency Syndrome, or AIDS. Not only was I HIV positive; I had full-blown AIDS.
“Aha,” I said; or so Jeanne tells me.
In facing past crises that amounted, like this one, to a fait accompli, my left-brain-dominated mind immediately summoned up two words to help me cope with the new reality: “That’s that.” The two findings of “HIV-positive” and “AIDS” were new facts of my life that I could not evade. There was nothing I could possibly do about either one except to treat them according to the most expert medical science available to me. Neither would go away, and I had to make the best of the situation. If that attitude and those feelings sound almost inhuman, at best stoical, I can respond only that this is my way of dealing with adversity. I wasn’t frightened or nervous. The public hysteria over AIDS was probably then at its zenith, but I would not become hysterical.
At the hospital, in our moments alone, Jeanne and I wondered if God had chosen us to undergo publicly all these medical challenges. But there were perfectly sane and credible explanations for my medical condition. Heart disease is certainly hereditary, and both my parents had suffered from it. As for my AIDS, I was simply unlucky to have had a couple of units of transfused blood that may have been donated in 1983 by some gay or bisexual man, or some intravenous drug user who perhaps had needed the money badly. I will never know for sure, and this is not an issue I dwell on.
Pulling ourselves together after the shock, Jeanne and I talked about who should be told, and when. Of course, we were sure that half of the hospital staff already knew these results. And being a public figure made me further vulnerable; I knew that at some hospitals employees were secretly being paid by news organizations to provide them with morsels of gossip. But if the story could be kept out of the newspapers and magazines, and off of radio and television, then who should we tell? Almost certainly we would not tell my father; I did not think his heart could take news like that. We considered it an absolute blessing that Camera, only twenty-one months old, hardly needed to be told anything about my condition. Her need to know would come much later.
QUICKLY I BECAME an expert on toxoplasmosis. Ironically, as terrible as the disease sounds, it is not normally a cause for alarm. Many people carry the parasite (Toxoplasma gondii) that causes toxoplasmosis, but very few of them are bothered by the condition itself. One common way to become infected is domestically, through exposure to cat feces in kitty litter; another is by eating raw or undercooked meat. The result is often only mild fever and pains, which just as often disappear without medication, or even without being treated. The parasite can be attacked effectively with a wide range of antibiotics. However, in rare instances toxoplasmosis can cause serious problems, including encephalitis. Doctors often warn pregnant women not to handle kitty litter, because when toxoplasmosis is passed on to babies it can cause severe neurological impairment.
In some ways, as bizarre as it may seem, I was almost fortunate in the particular opportunistic infection that had attacked my body, considering some of the others. The most devastating of the AIDS-defining or AIDS-related illnesses has been a peculiarly deadly form of pneumonia commonly known as PCP, so called because it is caused by the protozoan Pneumocystis carinii More than half of all AIDS sufferers find themselves infected with PCP, which has killed more AIDS patients than any other opportunistic infection.
Among the other AIDS diseases are: meningitis; the cancer known as Kaposi’s sarcoma (KS); the aptly named “wasting disease”; diarrhea; candidiasis, commonly called thrush; lymphoma; dementia; and tuberculosis. To have any one of these diseases, however, does not mean that one is exempt from having any of the others. Quite the contrary.
A parasite had attacked my brain, and the resulting abscess had been removed. But the brain would hereafter be vulnerable because HIV can lead to a wide range of brain infections, including one leading to dementia. At least half of all patients suffering with AIDS experience a degree of dementia, with symptoms ranging from moderate memory loss to deep depression, massive disorientation, radical motor disability, and even a kind of psychologically induced total paralysis. In the last stages of AIDS, no matter what has been the major opportunistic infection, dementia often asserts itself in a frightening way.
My toxoplasmosis could return. In fact, it was probably bound to return sooner or later. Toxoplasmosis affects between 20 and 30 percent of all AIDS patients. The good news was that because it could be t
reated effectively with antibiotics, I probably would not have to undergo surgery for that particular reason again. But the general condition of full-blown AIDS remained, and both toxoplasmosis and the other opportunistic infections remained deadly threats.
“Deadly” was a literal expression. I remember several years ago hearing the Surgeon-General of the United States, C. Everett Koop, say with his trademark bluntness: “If you contract AIDS, you will die.” How long I had to live, I did not know. But from the day I found out that I had AIDS, I have had to live with the knowledge that my days are numbered.
NO ONE IN my hospital room that day had to ask the question I knew would be on many people’s minds, perhaps on most people’s minds. But the rest of the world would ask: How had Arthur Ashe become infected?
To almost all Americans, AIDS meant one of two conditions: intravenous drug use or homosexuality. They had good reason to think so. Of the 210,000 reported cases of Americans, male and female, afflicted with AIDS by February 1992, 60 percent were men who had been sexually active with another man; about 23 percent had been intravenous illicit drug users; at least 6 percent more had been both homosexual and drug abusers; another 6 percent or so had been heterosexual; 2 percent had contracted the disease from blood transfusions; and 1 percent were persons with hemophilia or other blood-coagulant disorders.
The link between individual behavior and infection is crucial to AIDS. Indeed, AIDS was “discovered” in North America in 1980, when doctors in New York and Los Angeles noticed that an unusually high number of young male homosexuals had contracted Pneumocystis carinii pneumonia without the usual precondition, an immune system depressed by prescribed medicine. At about the same time, a normally quite rare disease, Kaposi’s sarcoma, also began to spread; and once more the victims were young male homosexuals. Later that year, Dr. Michael Gottlieb at UCLA, a federally funded clinical investigator, was the first to notify the Centers for Disease Control about the puzzling outbreak of infections.
By the middle of the following year, the evidence was conclusive and alarming that a new disease was with us, and that it was becoming a nationwide epidemic. The search then began for its cause. After much hard work, HIV was isolated and identified in 1983. An individual tested positive for HIV when a blood test determined the presence in the blood of antibodies fighting the attack by the human immunodeficiency virus, or HIV. Then AIDS was finally defined as a combination in any person of HIV and one or more of over two dozen opportunistic diseases. The search for a cure continued—and continues.
How one contracts AIDS apparently has a lot to do with how one will be infected. Kaposi’s sarcoma, for example, the reddish-purple, blotchy skin cancer that is for some patients the most humiliating of all the infections—because of the disfiguring lesions that make the disease so visible—means that the AIDS virus had probably been acquired through oral-anal sexual contact, more often among gay or bisexual men. Hemophiliacs, however, rarely fall prey to Kaposi’s sarcoma. (I probably will not be touched by it; small comfort.) And if a man with AIDS has been an intravenous drug user, he could easily die sooner than if he acquired AIDS through homosexual intercourse. The steady, illicit use of drugs typically undermines the immune system; AIDS is only a heightened version of this systemic weakening.
So how, the public would want to know, did Arthur Ashe contract AIDS? Had I been quietly shooting up heroin over the years? Or was I a closet homosexual or bisexual, hiding behind a marriage but pursuing and bedding men on the sly?
Perhaps because I had been a famous athlete, I suspect that few speculators would think that I was an intravenous drug user. I knew that this is not very sound logic, but logic is not the main point here. In any event, I was not and have never been a drug user. Like most young people in the Woodstock generation, I had tried marijuana. But I regard the use of cocaine as insanity, and heroin as an abomination.
I also know that I can look anyone in the eye and say two things about my sex life: in almost sixteen years of marriage, I have never been unfaithful to my wife; and I have never had a homosexual experience. Many people might not believe me, but I cannot do anything about their skepticism, or their idle malice. And it is not for me to worry about their doubts or their malice.
The facts of the case are simple. Recovering from double-bypass heart surgery in 1983, I felt miserable even though I had experienced post-operative pain before. I can remember a conversation I had with a doctor in which I complained about feeling unbelievably low, and he laid out my options for me.
“You can wait it out, Arthur, and you’ll feel better after a while,” he said. “Or we can give you a couple of units of blood. That would be no problem at all.”
“I would like the blood,” I replied. I don’t think I hesitated for a moment. Why feel miserable when a palliative is at hand? Surely there was nothing to be feared from the blood bank of a major American hospital, one of the most respected medical facilities in New York City. In fact, less than a month later, in July 1983, Margaret Heckler, President Reagan’s Secretary of Health and Human Services, confidently made an announcement to the people of the United States: “The nation’s blood supply is safe.” Her words are etched in my memory.
This was ignorance—and perhaps arrogance—speaking. Unfortunately for me and about 13,000 other recipients of blood transfusions before March 1985, the nation’s blood supply was not safe. That is the number of people who (according to the Centers for Disease Control, or CDC) either developed AIDS or probably became HIV-positive from blood transfusions but had not yet developed AIDS by April 1992. According to the CDC, a total of 6,694 persons had contracted AIDS from blood transfusions, and an estimated 6,000 had become HIV-positive without contracting AIDS to that point. The day after my announcement, I read these figures in New York Newsday.
In March 1985, too late for those unlucky 13,000, government officials finally had a test in place for all blood banks to be able to detect the presence of HIV, as well as other diseases, including hepatitis, which was already targeted. Did this mean that the nation’s blood supply was now, finally, totally safe? No. Between March 1985 and March 1992, according to the CDC, twenty Americans became infected by AIDS through a blood transfusion. To be sure, this was a dramatic and gratifying reduction in the rate of infection. But because a donor might be infected with HIV for several months without any clinical evidence of infection, the nation’s blood supply is not 100 percent safe. Unless some method of purifying HIV-contaminated blood is found—and no such method is even remotely in the offing—the blood supply will never be completely safe.
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 br
ooding 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.
