Days of Grace (37 page)

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-CD
⁴
complex electroinsertion technology, by which full-length CD
⁴
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.