Days of Grace

by Arthur Ashe

  I felt honored by their gestures of friendship; and indeed the fall of 1992 was a season of being honored; bashfully but gratefully I accepted a number of awards. Early in November, I received the Helen Hayes Award, and, a few days later, another award from the National Urban League, an organization that has labored for decades on behalf of economic opportunity for blacks. Later that month, I received the first Annual AIDS Leadership Award of the Harvard AIDS Institute, at the Carpenter Center at Harvard. Senator Edward Kennedy spoke on the topic of leadership in combating AIDS, and Maurice Tempelsman, chair of the advisory council of the institute, presented the award. Early in December, I received the American Sportscasters Association Sports Legend Award. Days later, an afternoon press conference at the Pierre Hotel on Fifth Avenue revealed that I was to receive unquestionably the most publicized of my awards of the year. The editors of Sports Illustrated magazine named me its Sportsman of the Year, obviously not because of what I had done on the court but away from sports. The award was presented at a gala dinner that evening at the Jockey Club in Manhattan.

  On December 1, at the invitation of Secretary-General Boutros Boutros-Ghali, I had addressed the United Nations on the occasion of World AIDS Day. I considered that speech one of the most significant of my life, perhaps even the most significant. In it, I stressed the formidable power of AIDS but also deplored the weakness of the effort against it. “It has been the habit of humankind,” I noted, “to wait until the eleventh hour to spiritually commit ourselves to those problems which we knew all along to be of the greatest urgency.” In the face of a pandemic, we could hesitate no longer. Although 80 percent of the new cases would arise in developing countries, 94 percent of the funds to treat AIDS patients are spent in industrialized nations. This imbalance must be corrected, I urged. “All of us world citizens—Eastern and Western, developed and developing, regardless of ethnicity, nationality, or geographic origin—must see AIDS as our problem. Developed countries must do more, not only out of a moral sense of purpose but because it is in their own selfish economic interest to do so.”

  In the United States and around the world, a variety of reactionary attitudes impeded the fight against AIDS. “Nevertheless,” I insisted, “we must try and we must succeed or our children and grandchildren will one day rightfully ask us why in the face of such a calamity we did not give our best efforts. What shall we tell them—and their mothers in particular—if we don’t measure up? How shall I answer my six-year-old daughter and what do we say to the estimated ten million AIDS orphans by the year 2000? That their parents’ generation was so racked with political and cultural and religious discord that it was willing to needlessly condemn millions of medical refugees?”

  Commending both the United States and the United Nations for recent decisions, however belatedly, to intervene in hunger crises in Africa and Eastern Europe, I reminded the delegates that “the AIDS pandemic has an even greater urgency.” I ended by expressing optimism that AIDS would finally be defeated: “We want to be able to look back and say to all concerned that we did what we had to do, when we had to do it, and with all the resources required.”

  Two days later, in Brooklyn, I announced the creation of the Arthur Ashe Institute for Urban Health at the Health Science Center of the State University of New York there. Earlier in the year, after my AIDS announcement, I had visited the center with the Reverend Paul Smith, who is affiliated there, then met later with him and some other officials, including Donald J. Scherl, the president of the Health Science Center. I found the major aim of the center, to develop innovative approaches to the problems facing residents of Brooklyn and other urban areas across the nation, to be closely in line with some of my pressing concerns. After some deliberation, I agreed to the creation of the institute in my name, and to serve as the first chairman of its board. However, the most unforgettable aspect of that visit was my tour of a ward at the center devoted to children stricken with AIDS. I was touched to see a banner, signed by all of the children, welcoming me. “I know what you are going through,” I told them, “because I, too, have AIDS. I hope we can one day eradicate this disease through the work of the institute.”

  Aside from my own AIDS foundation and this center, I expect to lend my name to only one other project: the funding of the Arthur Ashe chair in pediatric AIDS research at St. Jude’s Hospital in Memphis, Tennessee. This project is independent of the work of the Ashe Foundation for the Defeat of AIDS. Again I must try to persuade friends and well-wishers to contribute money to this fight. Anyone who had been with me at that hospital in Brooklyn, and at any of the hospitals I have visited in the past year, where children stricken with AIDS are increasingly commonplace, would recognize the urgency of this need to conduct research into the effects of AIDS on children.

  AS CHRISTMAS DREW near, I had every reason to be happy. The Sports Illustrated award brought a spate of publicity, including appearances on ABC’s “Good Morning America” show and with Tom Brokaw on NBC. On December 21, Camera celebrated her birthday with a party that I not only attended but also videotaped. The party proved something of a strain, however. Walking through the streets lugging the videocamera proved more onerous than I had thought; at least, I was sure that the weight of the videocamera was the source of my discomfort. I was left feeling weak and tired, so that I did little for the next two days. Then on Christmas Eve, around noon, tired of being housebound, I went out for a walk in the neighborhood. I was startled by how freezing cold the air was. I walked for about twenty minutes, but after five minutes I began to regret having come out at all. I was frozen to the bone and gasping for air.

  Christmas found me not very well, but I was buoyed by the joyous reaction of Camera to her presents, and by the telephone calls that came from family and friends. Still, I was not well enough to do what has become for me, in some respects, the most important ritual of the day. When I was a boy, on Christmas, my father always took me late in the day to visit families who were less fortunate than we were. We brought food and toys—and Daddy always insisted that we give away not simply old toys but one or two of the new toys we had just received. I have continued this tradition with Camera. For the past three Christmas Days we have gone to Harlem late in the day and visited the hospitals and given away toys, old and new. But I couldn’t do it this year. I was not well enough.

  So I was glad the next day, when Jeanne, Camera, and I flew south to Miami and the Florida sun. Down there, at the Doral Resort and Country Club, with our friends and family, we would ring out the old year, which has been so packed with events, some of them momentous. And we would ring in 1993, with kisses and hugs and sips of wine and the hope, always the hope, for a bright and healthy and prosperous New Year.

  Chapter Ten

  The Threads in

  My Hands

  THE YEAR 1993 did not start well. In fact, New Year’s Day found me ill at ease, hurting, coughing, and feverish, on an airplane bringing my family back a day early from Miami.

  I had planned to work hard while in Florida. My main task there would be to teach my annual Christmas tennis clinic at the Doral, where I am now international tennis director—having relinquished my leadership of the main tennis program some time ago. I looked forward to working diligently with the guests. But I also hoped to squeeze in as many rounds of golf as I could, on one or another of the four excellent courses at the Doral.

  A cold front was pushing its way south across the eastern United States, but near Miami we were bathed in sunshine and warm weather. Although Camera had been reluctant to leave her Christmas tree and most of her presents behind, she seemed ecstatic to be in the sun. Her happiness made Jeanne and me feel all the more blessed.

  In fact, I was out on the golf course with Jeanne’s father, John Moutoussamy, and a Canadian friend, Stanley Kivenko, when I first noticed that I was having some difficulty breathing. I couldn’t understand why; we were riding comfortably from tee to tee in a golf cart, so there was no reason for me to feel tired. Then I started
to cough. The cough persisted. From the seventh green, as I waited to putt, I took out my cellular telephone and called my main AIDS physician, Dr. Henry Murray, in New York. He advised me to see a doctor as soon as possible.

  Later that day, I went to see my AIDS physician in Miami, Dr. Barry Baker. After examining me, he ordered a chest X ray. It revealed nothing out of the ordinary.

  The next morning, I went to Miami Baptist Hospital to seek the advice of Dr. Michael Collins. Fourteen years ago, in New York, Dr. Collins had treated me for the heart disease that had started my sorry medical record. He examined me, and ordered an echocardiogram, which uses sound waves to study the action of the heart. At this point, I still assumed that the cause of my shortness of breath was a lack of blood going to the heart, depriving the heart of oxygen. In New York, I had found out that one of the arteries leading to my heart had virtually shut down, and I had thought of having it opened in Miami. Dr. Collins and I would have to decide on one of three procedures. In an angioplasty, he would insert a balloon into the artery and then inflate the balloon. He could use a laser beam to melt the deposits clogging the artery. Or he might perform yet another invasive procedure, using a sort of Roto-Rooter on the deposits.

  After his examination and the echocardiogram, however, Dr. Collins decided that the problem was not with my heart but in my lungs. What exactly was wrong, he couldn’t say. Clearing the artery should wait until my lungs were healthy again.

  The next day, still coughing and short of breath, I tried to get another X ray of my chest. However, when the physician learned that I had just had one, he refused my request; chest X rays are not done every day, he insisted. His refusal actually lifted my spirits, and I went out cheerfully to play a round of golf with a foursome that included former American tennis great Butch Buchholz, whom I have known since my senior year of high school in St. Louis, Missouri. Again I enjoyed the outing in the warm sunshine, but again I was bothered by an inexplicable shortness of breath. I began to think that perhaps a cold was coming on. Perhaps I had simply breathed too much bitingly frigid air on Christmas Eve in New York. I told myself not to worry. With the daytime temperature in Miami resolutely in the eighties, I looked for my symptoms to lift within a day or two.

  That night, when we had dinner at what some people call Miami’s most famous restaurant, Joe’s Stone Crab, I enjoyed feasting on the delicious specialty of the house. Later, I went to bed feeling pretty fine, except for some slight coughing and just a hint of congestion.

  On New Year’s Eve morning, I went out for my last day of tennis clinics for the Doral. Even with my cough and chest pains, I looked forward to a full two days of golf before we headed back to the wintry cold of New York. After my last clinic, I headed for the links. I played a decent round, but found myself depending on a golf cart to move myself to the ball. I was beginning to recognize that in addition to anginal discomfort, the mere act of drawing air into my lungs was causing me some pain. I certainly could not take any deep breaths.

  After finishing my round of golf, I stopped by the hotel swimming pool to catch a glimpse of Camera enjoying the water and the warm weather. Then, feeling drowsy, I quietly retired to my room alone for a nap.

  That evening, Jeanne, Camera, and I went to dinner in the hotel coffee shop with Jeanne’s parents, two of their friends, her brother Claude, and her sister-in-law. After dinner, we all went over to Claude’s home to bring in the New Year. But midnight did not find me there. At some point, after watching me try to breathe without discomfort, Jeanne suggested that we head back to New York the next day, if she could arrange a flight. I agreed to do so, and around ten-thirty we left Claude’s so that we could call the airlines and pack.

  I was drowsy again when I reached our room, but Camera insisted that we turn on the television and watch the ball drop in Times Square to ring in the New Year. Earlier in the month I had taken her there and painted a festive picture for her of the coming New Year’s Eve celebrations. Now, all excited, she was determined to see that ball drop. Although the hour was late, way past her bedtime, Jeanne and I had no trouble giving in to her, and we enthusiastically joined the countdown into 1993. Then we all went happily to sleep.

  At five in the morning, I awoke with a start. I was on fire, burning up. I took my temperature: 101.9 degrees. Around eight in the morning, Jeanne called Dr. Murray in New York. He advised that we should see a doctor in Miami, but we both wanted to return home that day.

  With the aid of nothing more exotic than Extra-Strength Tylenol, I brought down my temperature and relieved the other symptoms sufficiently to fly back to New York. From the airport, I went straight to New York Hospital, where Dr. Murray was waiting for me. His examination did not settle the matter. Speculating that I probably had a form of atypical pneumonia, he put me on a powerful antibiotic, azithromycin. I started with two huge red capsules, then continued taking the drug through the weekend.

  It had no effect on me whatsoever. More feverish than ever, coughing badly, and miserable, I returned to the hospital on Monday. I saw Dr. Thomas King, a pulmonary specialist, who ordered a bronchoscopy; this procedure alone could give the answers we wanted. Dr. King warned me that the procedure, while painless, is extremely unpleasant. A local, topical anesthetic was applied to my nasal passage, and I swallowed a dose to anesthetize my throat. A thick tube, about a third of an inch in diameter, was forced down my nose and into my lungs. At the end of the tube was a tiny television camera. To allow me to breathe, another tube went down my throat into my esophagus.

  Dr. King had said that with the tubes in me, I would feel certain that I could not breathe, but in fact I would be able to. He advised me not to panic. I tried to be reassured by his confidence, but a minute or two passed before I gained my own. Listening just outside the door, Jeanne told me later, she heard the most awful gurgling and heavy breathing as I struggled for breath while the camera mucked around my lungs, rummaging in what looked like a dirty sponge.

  The procedure lasted between thirty and forty minutes. As he watched the television monitor, Dr. King spoke into a microphone and recorded his observations. That is how I found out I was suffering from the dreaded PCP, or Pneumocystis carinii pneumonia, about which I knew something.

  Thus far, aside from the toxoplasmosis that uncovered the fact that I have AIDS, I had avoided every one of the opportunistic diseases that, in combination with the presence of HIV in the body, define the condition known as AIDS. Now I had one of the most feared. Pneumocystis carinii pneumonia is a very rare form of pneumonia, found in the past mainly among traditionally impoverished East European immigrants with already severely compromised immune systems. The disease acquired a fresh notoriety with AIDS. In fact, my shivering and burning fever were trademarks of PCP infection. In the last stages of their illness, AIDS sufferers often endure raging fevers all day and all night.

  Fortunately, Dr. Murray assured me, my case was not particularly serious. I would definitely survive this bout. And New York Hospital-Cornell Medical Center was in the forefront in the world in research on this disease. Eight years ago, I probably would have been dead by this time.

  His words encouraged me, but I was still miserable. Sweaty with fever and chills, coughing and shivering, I lay under my blankets, feeling drained and depressed. As if the bronchoscopy had not been enough, the nurses couldn’t find a vein from which to draw my blood for a test. They stabbed my arm repeatedly, coming up dry each time. To complete the test, which had to be done as close to the time of the bronchoscopy as possible, I endured a rectal examination, a procedure that has never lifted anyone’s spirits.

  After an hour or so, Tylenol again brought down my temperature and gave me some relief. Then, intravenously, I was put on a regimen of the drug pentamidine, an antiprotozoal agent that has proven quite effective in treating PCP. At one time, I had taken it regularly in aerosolized form precisely to ward off infection from PCP. Now I was to stay on pentamidine for at least two weeks. This was not onerous; the side effects
are tolerable. Perhaps the most common of these is an elevation of one’s potassium level above the ideal amount. Another side effect, potentially more serious, is interference with the heart’s electrical system. Yet another is the anesthetizing of the taste buds (in this respect, pentamidine is like chemotherapy). Since I entered the hospital, I had been eating by the numbers.

  ON THE SIXTEENTH floor of a wing of New York Hospital, I sat in a room named after the late Greek shipping magnate Stavros Niarchos. I didn’t ask for the room; it was assigned to me. Undoubtedly it was the most luxurious hospital room I had ever had, and I have had quite a few. Apart from an intravenous feeding stand parked discreetly in a corner, my iron bed, mechanized and grimly practical, was perhaps the sole reminder that I was in a hospital. The elegant wood floors are stained dark; the ceilings are high; the furniture, which includes a sofa upholstered in leather, would hardly disgrace the living room of a fine house.

  Dr. David E. Rogers, one of the most eminent teaching physicians there—he holds an endowed professorship in medicine—stopped by to see me one morning.

  “A beautiful room,” he said.

  “Yes,” I responded. “It’s really special.”