“JEANNE,” I SAID. “Something is wrong with me.”
It was a beautiful late-summer morning in 1988. I was standing in front of her, in our suite at the Sagamore Resort on Lake George in upper New York state. Camera, who was a year and a half old, was with us. We had just come back from breakfast.
I had wanted to call home and monitor the messages on my telephone answering machine. I raised my hand up to the telephone on the wall and started dialing my number. Or rather, I tried to dial it. My fingers made an attempt to respond to my will, but they struggled in vain to do what I asked. I was trying to put my index finger on the buttons, but the finger wasn’t working very well. Perplexed, I looked at my hand and tried again.
“What is it, Arthur?” Jeanne asked.
“My fingers. I can’t get them to work well.”
“Maybe they are numb because you slept on them?”
“Yes,” I said. “That must be it. But no, they aren’t numb. I can feel them, definitely. I just don’t seem to be able to use them.”
“I’ll dial for you,” Jeanne said. And she did, without giving a hint of alarm.
At this point, in fact, neither of us was alarmed. Mainly because we had both been through some fairly harrowing times with doctors and illnesses, an unresponsive finger did not seem like much to be concerned about.
A month or so before, I had gone to the Sagamore for an Aetna board meeting. We on the board had been seeking some fresh approaches to certain problems, and decided that a change of scenery, away from the company headquarters in Hartford, might inspire us to think creatively. That meeting, everyone agreed, had been a success. Clearly, the quality of the resort and its superb location in the scenic Lake George region in upstate New York had something to do with our results. A month later, when Jeanne and I impulsively concluded that we needed to get away from our Westchester County home in the village of Mount Kisco, north of New York City, for two or three days, we thought at once of the Sagamore. We would relax there, then return home in time for the start of the most important American tennis tournament of the year, the United States Open. We needed to be rested, because the two-week tournament is typically a happy madhouse.
Then we decided to invite Donald Dell and his wife, Carole, to come along with us upstate. Donald and Carole, who were visiting from Potomac, Maryland, where they live and where Donald’s management firm, ProServ, had its main offices, would also be going to the U.S. Open.
We were having a good time together, until this strange numbness in my hand. I quickly dismissed the idea that what was happening to my fingers could have been caused by sleeping on my hand. Had I suffered a small stroke? That was a distinct possibility. Should I leave the hotel early and head home to my internist? We decided to stay. Frankly, I expected to go to sleep that night and awake to find my fingers back to normal.
However, by the time we checked out of the Sagamore, my right hand was hanging from the wrist, almost completely limp. Now I was somewhat alarmed. Nevertheless, when I telephoned my doctor, I did not suggest an emergency. Something seemed to be wrong with my hand; would he look at it? He asked me to come in the next day, Friday, August 26.
In the morning, a television crew came to our house to interview Jeanne and me for the “CBS This Morning” show with Harry Smith. In those days, one feature of the show each Friday was a visit to someone’s home. Our house in Mount Kisco, built before the Civil War, was somewhat special. Thinking about my hand, Jeanne and I had considered for a moment canceling the interview, but finally we decided against it. My appointment with the internist would come soon enough.
The television interview was pleasant in most respects but also something of an ordeal. No matter how hard I tried, I could not move a digit up, down, or sideways. My right hand, now completely limp, literally hung dead from my wrist. As I answered questions and talked about the house, I tried to act as nonchalant as I could; I certainly told no one from CBS that something was wrong. The truth is that I had to prop up my right hand with my left. I still have no idea how I got through the interview without anyone on the crew taking notice. I answered the questions with as much charm as I could muster, but my mind was elsewhere.
Around noon, I drove some eight minutes from our house to the offices of Dr. William Russell at the Mount Kisco Medical Group. I knew the way very well. The group offices were almost across the street from the Northern Westchester Hospital Center, where I served on the board of directors. I had confidence in Dr. Russell, an able internist whom we had consulted professionally in the past. He inspired confidence. Dr. Russell is the picture of the genial suburban family practitioner, someone almost out of Norman Rockwell’s America of a bygone age, but with the latest medical and scientific technology and information close at hand. Mature in years and manner, he is gentle, attentive, reassuring. Whenever I consulted him, he would ask not only about me but about Jeanne and Camera; often he asked about them first, before inquiring about my health. I liked that. He didn’t fumble for their names, but instead showed a genuine concern for their well-being. And he loved to play and watch tennis.
As I entered the office, I sensed such an unusual degree of excitement in the air that I wondered whether or not I was projecting my own nervousness onto the scene. As it turned out, Dr. Russell and his colleagues and staff in the medical group were on the verge of moving out of their old quarters into a new, sparkling facility across the street. But nothing interfered with the courtesy and orderliness of my reception, and I was soon ushered into Dr. Russell’s office.
The sight of my hand, as limp as a flag on a still day, made him sit up. Listening to my complaints, he looked closely at the offending hand. He hefted it, pulled on my fingers, flopped it about.
“Have you been feeling dizzy at all?” he asked.
“No. Not at all.”
“Shortness of breath? Any trouble breathing?”
“No. I feel fine.”
“A fever of any kind?”
“No.”
“Did anything strike your hand? Did you use it in some forceful way?”
“No. Nothing like that happened at all. It simply went dead.”
“Well,” Dr. Russell said, “I think there is only one way to go, and we have to do it right now. Something is interfering with the signals from your brain to the hand. The interference is almost certainly in the area of the brain, because I can’t think of any other likely reason for your hand to stop working.”
“What’s next, then?”
“I am going to arrange for you to have a CAT scan of your brain right away. I don’t want to alarm you unduly, but that’s the main way to proceed right now. And I do mean right now.”
The last time I heard a doctor speak to me with such a sense of urgency was July 31, 1979, when Dr. Lee Wallace, playing tennis on a court near my own, suspected that I was having a heart attack and insisted that I go straightaway from the tennis court to New York Hospital.
Dr. Russell made a telephone call or two. When I went across the street to the CT facility, the attendants were waiting for me. By this time I was more nervous than when I arrived at Dr. Russell’s. I had seen CAT-scanning machines before; they look like a set of timpani drums turned upside down. Keeping as still as I could, I waited while the machine’s X-ray mechanism did its business of photographing the brain at various angles. The entire procedure took about twenty minutes.
When I joined Dr. Russell and a radiologist in an adjoining room, there, up on the light box, were the CT images of my brain, very much like smaller, more familiar X-ray pictures of my chest or my knee.
“Hmm,” Dr. Russell said. At least, that’s what I remember him saying, as a look of genuine concern settled over his face. Stunned might be too strong a term, but he was obviously taken aback. I looked quickly at him, then looked again at the pictures. He was as professional as any doctor could be, but I could tell that he did not at all like what he was seeing. Doctors are trained to be dispassionate, since they see sick people all the time. However, trained or not, it is not always easy to react stoically to bad news.
I peered at the images, looking for clues to what had rattled him. I did not think I knew what to look for. I had never seen CAT-scan images of my brain before. Then I saw that the two hemispheres of my brain, which should have been nearly identical, were not. The right side of the brain was clear. The left side showed an irregularly round shape—a splotch. If the rounded brain looked like the moon, then the splotch looked like one of those arid lakes or seas on the moon. This splotch, I thought, looks exactly like the Sea of Rains. What was it doing on my brain?
As we sat and stared, I could feel Dr. Russell becoming more nervous, more uncomfortable.
“What is that?” I asked, pointing at the splotch.
“Look,” he said. He spoke slowly, choosing his words carefully. “I don’t want to steer you wrong. I’m not a neurologist or a neurosurgeon.” The radiologist with us wasn’t sure, either; we clearly needed some more opinions.
“Could you find someone at New York Hospital?” My heart surgeries had both been at St. Luke’s-Roosevelt Hospital on the Upper West Side in Manhattan; but my cardiologist, Dr. Stephen Scheidt, was attached to New York Hospital, on the Upper East Side.
“Of course.”
The drive back home, although it took only eight minutes, was pretty awful. Up until the moment of seeing the CAT scan, I had not felt extreme anxiety. What had triggered my anxiety now was not the CAT scan itself but the jolting effect of the image on Dr. Russell. Obviously he thought that I had something serious to fear.
Was it a stroke? A small one now, but the precursor of a massive one? A massive stroke that might leave me unable to care for myself? Was it a tumor of the brain? Cancer of the brain—inoperable? Would I face months of extreme pain and then certain death? Or would an aneurysm snuff out my life in a split second, as it had snuffed out Grace Kelly’s life as she drove her car with her daughter Stephanie in the beautiful hills of Monaco?
I knew a little about the brain from what I had learned in high school and in a course on physiological psychology I had taken at UCLA. Even the medical terms were somewhat familiar to me. Of course, while my knowledge of medicine was not negligible, most of it was limited to the subject of the heart. The brain was new territory.
In our kitchen, Jeanne listened to me explain what had happened. I talk about her now as my “co-patient,” and she has been exactly that for a long time.
Around three-thirty that afternoon, carrying the CAT-scan images and trying to remain calm, I entered the office of Dr. John Caronna, a neurologist at New York Hospital. A woman, one of his colleagues, gave me a sort of rudimentary preliminary examination.
“Stand up, please,” she instructed me. “Hold your arms out. Follow this object with your eyes.” She needed to make sure what was functioning and what was not. My hand was definitely not functioning, but the rest of me seemed fine.
I watched as Dr. Caronna looked closely at the pictures of my brain. Thinking about it now, I realize that the splotch on the left side of my brain was by no means an entire mystery to him. He already had his preliminary diagnosis, or at least his informed suspicions. However, like Dr. Russell, he was cautious.
“Something is in there. We can see that. But what? I don’t think we can know for certain without a biopsy.”
“You mean a brain operation?”
“Yes,” he replied. “We need to look at the tissue, examine it. I think we have to talk to a neurosurgeon. He can explain your options.”
Now it was his turn to make telephone calls. Soon we were joined by a neurosurgeon, Dr. Russell Patterson, and Dr. Stephen Scheidt, my cardiologist. They looked at the images. They, too, were cautious.
“Mr. Ashe,” Dr. Patterson assured me, “we don’t have to do anything right away. Obviously something is going on, probably an infection of some sort. We can simply wait and see what happens next.”
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 treated 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 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.
However, in 1988, no one was sure of the optimum dose. I started out taking ten capsules a day—five times every day, I swallowed two white capsules with a blue band around the middle. At that time, many doctors were prescribing a sixth dose of two additional capsules each day. After some discussion, Dr. Murray and I decided that I would not take the sixth dose. Not long afterward, following intense medical scrutiny of patients, doctors began to lower the prescribed daily dosage. Lower doses were proving to be more effective than the higher amounts, with much less toxicity. By fall 1992, I was down to a daily dose of three capsules. I refuse to dwell on how much damage I may have done to myself taking the higher dosage. My sacrifice and that of other patients of my generation of AIDS sufferers hardly begins to compare with the sacrifice of patients in the first years of the scourge. In those days, the scientific community had almost nothing to offer in terms of therapies, and the disease killed mysteriously and almost at will.
Eventually, in addition to AZT, I would also be taking regularly the antibiotic Cleocin, in a prescription that calls for three 150 milligram capsules four times a day. The Cleocin is prescribed to treat toxoplasmosis, but an additional benefit is that I did not have a single cold in four years.
To prevent brain seizures, I take two tablets of leucovorin each day, and one of Daraprim (pyramethamine).
For candidiasis (thrush), one of the most bothersome of the infections triggered by AIDS, I take nystatin pills and liquid suspension, a pleasant, lemon-tasting medicine. Thrush, which is a common infection in infants, can be one of the initial signs that AIDS is present or well on its way. It is caused by a fungus, Candida albicans, which often coats my mouth and tongue with a thick, whitish substance, making me quite uncomfortable. Thrush is also capable of invading the digestive system, in which case it becomes more dangerous. Nystatin holds the fungus at bay.
To stave off the likelihood of Pneumocystis carinii pneumonia, I started taking aerosolized pentamidine once a month.
Late in the summer of 1992, I started taking the drug ddI (didanosine), which was found to be more effective in combination with AZT than either had been alone. Because ddI tablets are supposed to be chewed but are hardly tasty, I ask my pharmacist to grind them into a powder and I add it to my cereal in the morning.
By 1992, I was taking about thirty pills, including natural vitamins, every day. My annual bill for prescription drugs alone runs to about $18,000. However, the cost fell dramatically after I started getting my drugs from my primary insurance carrier. It pains me to think of the many AIDS patients who must face such expense without adequate insurance.
* * *
“ARTHUR,” A FRIEND said to me, a note of solicitude in his voice, “I know you must have the best doctors available to treat you for this thing.” He cares about me. A figure nationally known for his literary skill, he nevertheless finds it hard to say the word “AIDS” to my face.
“Well, I don’t know if they are absolutely the best,” I reply. “I know they are very good.”
“I don’t want to interfere. That’s the last thing I want to do. But have you heard about …?”
I have a good idea what is coming next. In the murky, unstable, uncertain, swiftly shifting and evolving world of AIDS, many people have heard of miraculous cures, or of new therapies as yet unsanctioned by the FDA that have shown astonishing results.
Even when only a small circle of my friends knew about my AIDS condition, I had conversations just like this one with several of them. After making my public announcement, I received a torrent of advice and counsel about therapies—I don’t say medicine—among the mass of mail that I received every day.
Behind these conversations and letters was a genuine desire to help me and others. There was also, in many cases, a deep-seated suspicion of, and even hostility to, the main forces that control the world of health treatment: the federal government and the mighty drug companies. To many black people, the government means white people who oversee the administration of this country. I have already written about the dominant racial aspects of the controversy surrounding the drug Kemron, the alpha-interferon therapy developed in Kenya by Africans. Kemron is only one of the tantalizing “cures” or therapies that have been brought to my attention. Other treatments ranged from the religious to the physically invasive.
I do not need anyone to convince me about the power of prayer, about the wonders that religious faith can work in all sorts of ways and against extraordinary odds. I have believed in God all my life. But I am still surprised by the way some people see the Bible and Christianity in an almost shamanistic way. One day, one of my telephones rang and there was a woman’s voice on the line.
“Arthur Ashe?”
“Yes.”
“Arthur Ashe, you don’t know me, but I have an important message for you.”
“Thank you,” I said. “Who is it from?”
“This message is from God.”
“I beg your pardon?”
“God sent you a message.”
“What is the message?”
“The message is that you are going to be cured. And that you must read, every day without fail, Psalm 40.”
“Thank you very much.”
“You’re welcome. Goodbye.”
Psalm 40 is a good psalm. “I waited patiently for the Lord,” it begins, “and He inclined to me, and heard my cry.… He has put a new song in my mouth—praise to our God; many will see it and fear, and will trust in the Lord.” All the psalms are beautiful, I would say. But I do not know why I, or God, should favor one psalm over the others in this particular case. I think too many people confuse religion with magic.
Many of the “cures” that were suggested to me involved the powers of herbs and herbalists. Drinking “red clover flower” tea instead of water, along with other regimens, such as lifting weights in bed (but not out of bed?), would lead me to health. Another person touted the properties of a certain “tea from Brazil,” which, blended from the “inner bark” of the longest-living tree there, “basically builds the immune system.” A woman wrote from Los Angeles to warn about the dangers of AZT and advise about a herbalist in New Zealand whose potions kill bacteria and viruses.
Several letters told of the peculiar power of African herbs and African herb doctors. I was urged to make a quick visit to Abidjan, in the Ivory Coast, “where you can surely be cured” through the use of “African herbal mixtures.” A CNN television viewer in Accra, Ghana, wrote to alert me about the skills of an herbalist “in a remote region” of her country, who was so effective that he had cured “a white man” with AIDS.
Needless to say, few of these cures were free. From Natal, South Africa, came the promise of “a herbal formula” used efficaciously for leukemia, at a cost of only 450 rand. An African living in Brooklyn, who boasted of “certain herbs in Africa that have the power to heal any disease,” made me an offer: “I am not going to take a penny from you until you are cured, but you will sign an agreement with me for 5 million dollars payable on recovery.”
Letters like these tended to give herbalists, if not herbs, a bad name. But I know better than to underestimate the power of so-called “natural” cures. A doctor in Beijing, in the People’s Republic of China, sent me newspaper clippings about her “herbal powder” that had been used successfully, apparently, in treating certain brain tumors. (Because China denies visas to AIDS sufferers, she would have to come to me.) A Swiss virologist offered a cure that involved a drug based on a plant material from which toxins had been removed, and which had been used to treat herpes and cancer; treatment involved the ionization of blood with oxygen by IV for twenty minutes, deep injections into the buttocks, as well as gel and drops under the tongue for ingestion.
Other cures or therapies covered a wide spectrum of science. One serum was said to have “piranha-like effects” on HIV. Some involved the diversion of existing medicines toward the fight against AIDS. The drug reticulose, for example, which modulates the immune system, has been in use for a generation; an old tennis friend wrote to me about its astonishing effects on a patient infected with toxoplasmosis (as I had been) and who had suffered a stroke and been given forty-eight hours to live. Now, on reticulose, he was flourishing.
Another treatment involved what is called RBC-CD4 complex electroinsertion technology, by which full-length CD4 cells are inserted into red blood cells as a therapeutic against AIDS. Still another therapy involved a complicated laboratory process over a period of twenty-four hours, in which blood is purified by distillation and calcination (the application of very high temperatures).
Yet another treatment, sent by a man I had met and coached ten years before at the Doral resort in Florida, called for the introduction of a mixture of ozone and oxygen into the patient’s blood. This treatment had even been reported on in Blood: Journal of the American Society of Hematology.
Many of the letters I received complained about the stranglehold of the big drug companies on credibility and credit. One man, committed to a process in which the technology involved in the sterilization of bone in bone grafts was applied “to sterilize the blood and organs of the body,” wanted my help in establishing a major facility to develop this therapy. He lamented that when the powerful drug companies (for example, Johnson & Johnson and Bristol-Myers Squibb) announce promising treatments, they receive respectful attention from the public, the medical community, Wall Street, and government agencies. However, when a fledgling outfit does the same thing, “it is perceived as ‘snake oil’ because it is not conceivable that David could achieve what Goliath could not.”
Another company spokesman wrote about not having the “200-million-dollar bribe” that he claimed it took to establish a major new drug. I think he was referring to the huge amount of money typically needed in order to gain scientific respectability for a new product.
“Inordinate stress caused you to have two bypass surgeries,” a doctor wrote me. “The faulty AIDS transfusion was the organic insult to your immunology system. Your body is overloaded with stress.” His approach involved the concept of “colored light therapy” and the use of an “imagescope.” Doubtless this therapy, which I think has been used in psychiatry, can be useful. Still, I myself think that stress can be overrated as a cause of illness. I believe that controlling one’s anger or rage or sense of being over burdened is much better than blowing up or sagging into depression. I agree with what Carol Tavris wrote in her book Anger: The Misunderstood Emotion: “The popular belief that suppressed anger can wreak havoc on the body and bloodstream has been inflated out of realistic proportions. It does not, in any predictable or consistent way, make us depressed, produce ulcers or hypertension, set us off on food binges or give us heart attacks.”
I certainly do not believe that stress can lead to AIDS, but I remain eager to hear about the latest developments in the work being done on AIDS by researchers and scientists. Like everyone else who has AIDS, or who knows someone with it, I wait and wait for the news of a medical breakthrough or, at the very least, a new, life-prolonging drug. Late in the fall of 1992, for example, the best news was about a new treatment from Bristol-Myers Squibb, a drug called d4T, or Stavodine, supposedly more effective than any other therapy for AIDS. I want to know more about this new drug. On the other hand, I do not want to delude myself. I do not intend to grasp at straws. That helps no one.
WITH AIDS, I have good days and bad days. The good days, thank goodness, greatly outnumber the bad. And the bad days are not unendurable. Mainly my stomach lets me down and I suffer from diarrhea. I take my pills, and I am disciplined enough to stick to my schedule. Sometimes I become a little tired, but I have learned anew to pace myself, to take short rests that invigorate me. In this matter of AIDS, as in so many aspects of my life, I am a lucky man.
I believe that there are five essential pillars to support the health and well-being of every individual. The first is unhindered access to physicians who will render primary care, listen to and advise the patient, and follow up with treatments in a professional manner. The second is the availability of medicines, treatments, and other therapies. The third is the support of family and friends. The fourth is the determination of the patient to make himself or herself better, to take charge of his or her well-being in cooperation with others. The fifth essential pillar is health insurance, because few people can bear the cost of a serious illness without falling irretrievably into debt. Take away any of these five pillars, I believe, and the structure of individual health and welfare starts to collapse.
I have been fortunate to have all five pillars solidly in place: excellent physicians, perhaps the best that can be had; the most efficacious medicines, no matter what the cost; the loving support of a skilled, intelligent spouse and the most loyal and resourceful group of friends anyone could have; self-reliance taught from my boyhood by my father but reinforced by decades of rigorous training in a sport based on individualism; and no fewer than three generous health-insurance policies.
AIDS does not make me despair, but unquestionably it often makes me somber. For some time I have wrestled with certain of Susan Sontag’s ideas or insights in her remarkable books Illness as Metaphor and AIDS and Its Metaphors. In the former, inspired by her battle against cancer, Sontag writes about “the punitive or sentimental fantasies concocted about” illness, especially illnesses such as leprosy, tuberculosis, and cancer. “My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one purified of, most resistant to, metaphoric thinking.” AIDS is not a metaphor for me, but a fact; and yet I find it hard to avoid its metaphoric energy, which is almost irresistible. I reject the notion that it is God’s retribution for the sins of homosexuals and drug abusers, as some people argue, but on occasion I find its elements and properties peculiarly appropriate to our age.
I live in undeniable comfort—some would say luxury—in a spacious, lovely apartment high above Manhattan. When I venture out to walk the streets below, I see how others live who have not been dealt as generous a hand. I see poverty, usually with a face as dark as mine or darker, sitting on a box in front of my bank with a cup in her hand; or trudging wearily along the sidewalks; or fallen down into foul gutters. Around the corner, huddled on chilly stoops near the Greek Orthodox church, I see loneliness gnawing at human beings who surely deserve a far better fate. I hear madness crying out in the indifferent streets.
Sometimes, gloomily, I wonder about a connection between AIDS and where we in the United States are headed as a people and a nation as this century moves to a close. Too many people seem determined to forget that although we are of different colors and beliefs, we are all members of the same human race, united by much more than the factors and forces that separate us. Sometimes I wonder what is becoming of our vaunted American society, or even Western civilization, as an unmistakable darkness seems to settle over our lives and our history, blocking out the sun. Our national destiny, which at times seems as bright as in the past, sometimes also appears tragically foreshortened, even doomed, as the fabric of our society is threatened by endless waves of crime, by the weakening of our family structures, by the deterioration of our schools, and by the decline of religion and spiritual values. AIDS then takes on a specially ominous cast, as if in its savagery and mystery it mirrors our fate.
Surely we need to resist surrendering to such a fatalistic analogy. Some people profess to see little purpose to the struggle for life. And yet that is precisely the task to which, in my fight against the ravages of AIDS, I devote myself every day: the struggle for life, aided by science in my fight with this disease. I know that we are all, as human beings, going to our death, and that I may be called, because of AIDS, to go faster than most others. Still, I resolutely do battle with this opponent, as I boldly did battle with my opponents on the tennis court. True, this fight is different. The biggest difference is that I now fight not so much to win as not to lose. This enemy is different, too—dark and mysterious, springing on civilization just when civilization was sure that it had almost rid itself of mysterious beasts for ever. But it must be fought with science, and with calm, clear thinking.
I know that I must govern that part of my imagination that endows AIDS with properties it does not intrinsically possess. I must be as resolute and poised as I can be in the face of its threat. I tell myself that I must never surrender to its power to terrify, even under its constant threat of death.