by Arthur Ashe
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 othe
r 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.
