At this point, Jeanne’s blood had not been tested for HIV, and it would be several days before she received a clean bill of health. When Arthur discussed the situation with his doctors, they explained he had probably received tainted blood during one of his two bypass operations, either in 1979 or 1983. Their best guess was that the two units of blood administered when he was recovering from the 1983 procedure were the culprits, but there was no way of knowing for sure. The only certainty was that he was HIV-positive. Whether he had full-blown AIDS was another matter. In all likelihood, the infection in his brain was a sign that he did, but they couldn’t be certain until after performing a biopsy.5
Performed six days later, just as the U.S. Open was drawing to a close, the tissue removal and biopsy operation identified the infection as toxoplasmosis, a once rare condition that had become a common marker of AIDS. Arthur responded to the news with a simple “Aha,” as Jeanne grabbed his hand, “squeezing it hard and long, as if she would never let go.” Over the next few days, before Arthur’s release from the hospital on September 15, they talked about virtually every aspect of their perilous situation. “I wasn’t frightened or nervous,” Arthur later insisted. “The public hysteria over AIDS was probably then at its zenith, but I would not become hysterical.”
They also decided to focus on the present and the future, not the past. Nothing could be gained, they reasoned, from casting blame or indulging in self-pity. “As for my AIDS,” Arthur concluded, “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.”6
A more pressing and inescapable problem was the likelihood of public disclosure in a nation terrified by the threat of AIDS. “Pulling ourselves together after the shock, Jeanne and I talked about who should be told, and when,” he recalled. “Of course, we were sure that half of the hospital staff already knew these results. . . . But if the story could be kept out of the newspapers and magazines, and off the 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.” In the end, he decided to limit news of his condition to a trusted circle of close friends, roughly a dozen people who along with his doctors would share the difficult journey ahead.7
Ten years earlier Arthur had responded to his first heart attack by turning himself into an expert on cardiology, and he did the same with AIDS. As one of his doctors recalled, “he always had something to read in hand.” His first task was to read everything he could find on toxoplasmosis. The source of his infection, he soon learned, was the parasite Toxoplasma gondii, a relatively common pathogen. For most people with toxoplasmosis, the period of infection is relatively brief and inconsequential, especially when it is treated with antibiotics. But for HIV-positive patients, it is a clear sign of trouble to come; during the progression of AIDS, the brain is vulnerable to a number of infections, including several that lead to dementia, and once the brain is affected by one of these infections there is a strong possibility others will follow.
Though understandably alarmed, Arthur also learned his current condition could have been much worse. Many AIDS sufferers begin their descent not with toxoplasmosis but with PCP, a devastating form of pneumonia. Indeed, most of the AIDS patients who had died from infection had succumbed to PCP. Contracting toxoplasmosis was no picnic, and despite the extraction of the diseased brain tissue, the condition was likely to return at some point. But if it did return, treatment with antibiotics rather than surgery would be the probable protocol.8
There were, of course, other horrors to worry about. Many AIDS patients eventually contracted Kaposi sarcoma, a form of skin cancer characterized by reddish purple blotches. If this disfiguring condition attacked Arthur’s body, there would be no way of concealing his condition from the public other than complete isolation. In the emerging popular culture of AIDS, Kaposi sarcoma was thought to be a sign that an infected individual’s HIV-positive status probably stemmed from sexual contact associated with homosexuality.
As Arthur and his doctors examined and reexamined his skin during the weeks and months following his brain surgery, they found no evidence of this skin cancer. But Arthur knew that as soon as his condition became public, he would have to face a barrage of humiliating interrogation: “Had I been 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?”
Despite the fact that several thousand people had contracted AIDS through blood transfusions, there was widespread skepticism that a significant number of individuals had been infected in such an innocent and blameless way. After all, at the dawn of the crisis in July 1983, Margaret Heckler, the secretary of health and human services, had declared emphatically, “The nation’s blood supply is safe.” Prior to 1986, Surgeon General Koop was under strict orders from President Reagan to say little or nothing about the AIDS crisis. And when he did break his silence with an official report, Koop placed a heavy emphasis on the connection between AIDS and homosexuality. When the gay actor Rock Hudson became the first major celebrity to die of AIDS in October 1985, there was open discussion in the press about the homosexual roots of his illness. From then on, the assumption that AIDS was primarily a homosexual disease was a mainstay of public thought.
With no clear direction from the nation’s leading medical and health authorities, it is little wonder that rumors, oversimplifications, and false claims came to dominate the public understanding of AIDS. Sooner or later, any man who had the disease had to deal with suspicion of his homosexuality, and Ashe was no exception. When he wrote his memoir Days of Grace several months after his condition became public, he felt compelled to address the question of sexual orientation. “I can look anyone in the eye,” he declared, “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 may not believe me, but I cannot do anything about their skepticism, or their malice.”
Navigating around the fears and falsehoods inspired by the AIDS crisis occupied Arthur’s attention from the moment of his diagnosis. For several reasons he felt he had no choice but to keep his condition hidden from the public, government authorities, and his employers. He worried that if his condition became known, his passport would be taken away, and there would no more trips to Wimbledon or the French Open. Would he be welcome at NJTL events, where parents might fear their children would become infected if they came in contact with him? Would he be able to continue his activities on the college lecture circuit? Would he be able to remain on the Aetna board? Work with kids at Doral? Retain his endorsement contracts? Interact with his friends and neighbors, and even his extended family, without feeling like something of a pariah? All of these questions haunted him as he looked to the future.9
Even without public exposure, Arthur faced daunting challenges. First and foremost, he had to keep his equilibrium and avoid panic. One of his first decisions was to rule out suicide, a common path among AIDS victims. “For me, suicide is out of the question,” he revealed in Days of Grace. “Despair is a state of mind to which I refuse to surrender. . . . The news that I had AIDS hit me hard but did not knock me down.” Those close to him during this time marveled at his ability to escape what he later called an “avalanche of deadly emotion.” “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,” he insisted. “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.”
Even for a man known far and wide for his stolid composure, this assertion of quietude in the face of death is startling. Arthur’s explanation pointed to the decade of high anxiety he had already experienced: “My fir
st 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. . . . Mainly because I have been through these battles with death, I have lost much of my fear of it. . . . 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.”10
Arthur knew AIDS would ultimately end his life, probably within three to five years. But he was determined to stick around as long as he could. By the end of 1988, he was taking an array of drugs designed either to ease his pain or prolong his life. Before starting this protocol, however, he had to deal with two postoperative conditions. Since he was allergic to penicillin, his doctors prescribed a sulfur-derived alternative, Daraprim, a powerful antibiotic that left him with severe and painful kidney stones. Once the kidney stones passed through his system, he thought he was in the clear. Yet he soon discovered the antibiotic had also triggered a skin disorder known as Stevens-Johnson syndrome. The condition, as described by Dr. Henry Murray, the AIDS specialist assigned to Arthur’s case, resembled “a dramatic life-threatening sunburn” that left a “striped ocelot” pattern on the victim’s skin. Though it did not last very long, the Stevens-Johnson syndrome also attacked the inside of Arthur’s mouth. “For five days I could neither talk nor eat,” he recalled, “because my mouth had become painfully sore.”
By early October, with the Stevens-Johnson episode behind him, Arthur began to work with his doctors on a long-term medicinal plan. Under the care and supervision of Dr. Murray—a forty-five-year-old Cornell Medical School graduate with a specialty in infectious diseases—he soon became, in the doctor’s words, “the most well-informed patient that I ever had.” He read every relevant source he could get his hands on, including the special AIDS issue of Scientific American that appeared a month after his surgery. One particularly disturbing article in the magazine claimed “90 percent of AIDS patients die within three years of being diagnosed.” Arthur, who knew the date of his diagnosis but not the date when his blood had been infected with HIV, did not know where he stood in respect to this morbid piece of data.11
Tempted to ask Dr. Murray for an estimate of how long he had to live, Arthur opted instead for a simple question: “Will you tell me when I have about three months left?” “We’ll do our best,” Murray promised, but he couldn’t say any more than that. Part of the uncertainty rested in Arthur’s dual status as a patient afflicted with both AIDS and a serious heart condition. Keeping him alive required a joint effort by Dr. Murray and the cardiologist Dr. Scheidt. As Arthur explained, the two doctors “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.”
This coordination proved difficult, largely because both of his conditions required a complex set of medications. The resultant burden was considerable, even though Arthur was reportedly a model patient who almost always followed his doctors’ orders. A firm believer in medical science, he was also psychologically averse to taking any medication beyond the minimum required. So he wasn’t pleased when his daily pill consumption rose to two dozen and beyond. For his heart condition, he was already taking five medications plus several natural vitamins, and he kept amyl nitrate in his medicine cabinet in case he suffered another serious attack.12
His daily regimen of anti-AIDS medicines was even more daunting. Chief among them was azidothymidine, commonly known as AZT. Introduced in 1987, AZT had become the medical profession’s primary weapon against AIDS by the time Arthur was undergoing treatment. Unfortunately, across the full range of AIDS patients it affected individuals in radically different ways. For some it was a “miracle drug,” but for many others it was toxic and dangerous. Arthur, as it turned out, was one of the fortunate AIDS sufferers who tolerated AZT “fairly easily.” Yet like almost all AZT users, he discovered it could take months and even years to determine the optimal daily dosage. At the outset, he was taking ten AZT capsules per day, but after several reductions his dosage was down to three per day by the fall of 1992.
The reduction of his dosage was typical among AIDS patients, as doctors learned less was often more when it came to AZT. Once this became obvious, Arthur worried that taking the high dosage had already shortened his life. Since experimentation was common in AIDS treatment, his entire regimen of medicines evolved over time. Eventually Dr. Murray prescribed Cleocin, an antibiotic Arthur took four times a day, leucovorin (folinic acid) and Daraprim (pyrimethamine) as brain seizure inhibitors, nystatin pills to combat thrush infections in the throat, and didanosine (ddl) as an additive to AZT. All told, the annual cost of his prescriptions was approximately $18,000, only part of which was covered by insurance.13
Despite periodic blood tests, Arthur had no way of knowing how much effect the barrage of pills was having. But within six weeks of his surgery, he felt strong enough to resume most of his normal activities. Throwing himself back into the swirl of board meetings, lectures, workshops, and other public appearances was essential to shielding his bout with AIDS from public view and consistent with his nature. If death was destined to come early, he reasoned, he wanted to make the most of every minute he had left. In the words of Dr. Murray, who marveled at his patient’s resilience, “he did it all.”14
Arthur’s return to public life began with the long-awaited launch of A Hard Road to Glory. On November 13, one day before the official publication date and one week after a full-page advertisement appeared in The New York Times Book Review, the Times ran a sports section essay written by the proud author. Titled “Taking the Hard Road with Black Athletes: Success in Sports Became a Matter of Cultural Pride,” the promotional piece offered a tantalizing précis of the five-year-old project’s findings. “Records aside, black athletes have had a major impact on black history,” Ashe insisted, claiming that “proportionately, the black athlete has been more successful than any other group in any other endeavor in American life . . . despite legal and social discrimination that would have dampened the ardor of most participants.”15
Earlier in the week, Ashe had said essentially the same thing during a phone interview with Barry Lorge. “The book has been an obsession for almost six years,” Ashe told Lorge, adding: “I learned so much that was not in my history books. I kept asking myself, ‘Why didn’t I know this before?’ . . . There was so much human-interest raw material that had never been compiled before. To me, it put into perspective the contributions black athletes have made to black life in this country, which was much greater than I had imagined. . . . I think this book will change the way black historians look at sports.” Lorge encouraged his readers to take a look at what Ashe had produced, though he warned that the three volumes were “primarily a reference work.” As he put it, “Ashe knows he is not James Michener, and his topic was not aimed at the best seller list.”16
Perhaps not, but Amistad Press projected sales of 40,000 to 45,000 for each of the three volumes during the first two years after publication. To meet this goal, Ashe and his publisher would need the help of enthusiastic reviewers. By Thanksgiving, A Hard Road to Glory had received one full-scale review in the Chicago Tribune, plus a brief shout-out from Dave Anderson of The New York Times, who declared Ashe’s “three-volume history of the black athlete tells more about his dedication to a purpose than his Wimbledon and United States Open tennis championships.” The Tribune review, written by Skip Myslenski, praised both the text and the author while stressing the books’ revelation of just how hard the road to glory had been. “Arthur Ashe, once a tennis champion, now one of sport’s consciences,” Myslenski wrote, “recounts the closed minds, narrow thinking, and the endless prejudices encountered by Blacks as they strove to become part of America’s sporting fabric.”17
The major review Ashe had been waiting for appeared in The New York Times Book Review on December 8. Titled “Champions We Never Knew” and writte
n by the noted journalist and author David Halberstam, the review described A Hard Road to Glory as “a fascinating three-volume study.” Though not a trained professional historian, the author, in Halberstam’s judgment, had “done nothing less than put together a remarkable history of the Black athlete in America from 1619 to the present.”
The review went on to point out that “this work is more than a history. It is a cry of protest in which ancient sins are revealed. Mr. Ashe is not merely a historian, he is a witness as well. And the story he tells is in many ways a melancholy one . . . a history of races never run, fights never fought and dreams deferred. For decades and decades blacks were barred by whites from whatever sport existed, and then they were defamed by those very same whites for lacking the guts, ability and intelligence to compete.” Halberstam saluted Ashe for turning “endless rumors and previously documented stories into fact, a considerable achievement.” The three volumes represented nothing less than “a compelling history of prejudice and meanness, of honor and dishonor,” a discourse “both about sports and not about sports.” In closing, he maintained that “for any reader trying to understand the relationship between sports and society and why there are so many blacks on the field but so few coaching and in the front offices and the news media, I cannot commend ‘A Hard Road to Glory’ too highly. Mr. Ashe’s accomplishment is monumental.”18
Ashe hoped Halberstam’s tribute would be the first of many glowing reviews, but it soon became apparent only a handful of newspapers had any interest in his book. One newspaper that acknowledged the book’s appearance was The Washington Post, but the Post’s reviewer, Dan Nicholson, had few good things to say. “No one seems to have been able to make up his mind what sort of book—encyclopedia, reference book, coffee table book—A Hard Road to Glory should be,” he complained. “As a result, it is a little of each, and not enough of any one.”
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