Borrowed Time: An AIDS Memoir

by Paul Monette

  Gradually we all released ourselves from the white-knuckle grip of the previous month. Bernice sat in the chair by the window day after day, knitting a pearl-white sweater for Rog, a sweater she later admitted to me she didn't care if he ever wore or liked; she was knitting to keep him alive. Meanwhile Al joked and flirted with the nurses, as easygoing as he must have been with a hundred different regulars at the H & H. He possessed a wonderful breeziness of spirit that was infectious, plus a gut respect for how hard people worked. And he didn't miss anybody. After a couple of weeks I realized he and Bernice had a chatting acquaintance with Lily, the black woman who swabbed the bathrooms, and Clarence, who did the heavy maintenance work in the corridors.

  I was on nodding acquaintance with both, but Al would ask Lily every day about her grandchildren. Always a cheery hello and a bit of sly banter, no matter who came in to take Roger's temperature or deliver his tray. Roger and I were fairly skilled at endearing ourselves to the tenth-floor staff, but Al was a pro. Somehow he and Bernice helped rid the place of its awful strangeness. In the late afternoon they'd take their striding cardiovascular walks up and down the corridor, twenty lengths a mile, waving and greeting a multitude as they went.

  When Roger had been on AZT a week, we were already buzzing to one another that it was working, as we watched him emerge from under water. The fear and labor went out of his breathing, and he talked merrily and tossed off puns. Even the looming IV equipment ceased to be so terrible, now that it was doing magic-bullet work. And despite the warnings of the doctor in charge of AZT that no one must know, since the drug wasn't licensed yet, I bragged to the nurses and anyone else who'd listen. One afternoon an IV nurse came in when Roger was dozing and demanded of me in a kind of spy whisper: "How did he get this drug?"

  Her brother was an intern at Duke in North Carolina, and for several weeks he'd been telling her about the dramatic results, though he'd cautioned her that she probably wouldn't be seeing the drug at UCLA for at least half a year. Now she wanted to know everything about how we'd managed to spring it—a kindred spirit, clearly—so we took her through all the intricacies while she tapped the vein in Roger's arm. She pressed her beeper to tell them not to disturb her, she was in conference. This was the same woman who told a gathering of her colleagues that if they didn't like AIDS they'd better get out of medicine. She eventually came to work full time in the fourth-floor Immunology clinic. One of those remarkable people we'd meet occasionally along the way, who was passionately committed to facing the calamity, who wouldn't rest until she was part of the solution.

  Jaimee flew in from Chicago for the weekend. We'd been reporting to her excitedly for days how much better Roger looked and felt, but of course she was stunned and upset by his gauntness. Yet the three days she was in town were wonderfully carefree. The two of them laughed their heads off, tracing the circuitous routes of their childhood: the trip to the Grand Canyon, where Jaimee was too young to ride a mule to the valley floor and fumed at the unfairness of it all; the visit to Disneyland in its opening summer, where they got to meet Walt himself on Main Street. "Like meeting Louis XIV at Versailles," as Rog used to say.

  Late at night I'd take Jaimee back to the guesthouse at UCLA, where we'd sit over tea and unwind and strategize. Roger puffed with pride to see how seamlessly Jaimee and I got along. It gave him the greatest satisfaction, as if he'd struck a deeper chord in his family—for Jaimee was known as a guarded sort, highly selective about her loyalties. She remembers Roger getting out of bed to go across to the tenth-floor lounge, and fretting before he left the room, "Wait—is my hair brushed?" She couldn't believe it, the shy twinge of vanity about his bald spot, no matter that he looked half-starved. You prove you are still alive in the smallest gestures. Jaimee says she hadn't a clue how she looked herself that day. Like the rest of us, she threw oil clothes in the morning and ran unkempt to Roger's room.

  He could feel he was getting stronger again. At last it began to excite him as much as it did us, as if the future had opened again. "You're the miracle man," as Charlene the nurse would tell him one night the following summer after surgery. The passing of the crisis, the giving back of time—people with AIDS will tell you about that tidal shift, how it happens over and over. Now Roger would need all the positive feelings he could muster, because right after Jaimee left, the doctors didn't like what the arterial blood numbers were showing. They ordered another bronchoscopy, a test we had come to dread as a no-win situation. Once again Al and Bernice and I had to wait out the procedure in the lounge, and this time no one pretended to read.

  They must have given Rog a jot too much local anesthetic, because he didn't come out of it as smoothly as before. For the next three hours he couldn't talk at all, just a whispered croak, and I had to put my ear very close to his lips to figure out what he was trying to say. At one point he was pleading for something, and I strained to listen and had him repeat, till I finally made it out: "My... balls."

  They were jammed up under him because his hospital gown had got twisted beneath him while they were maneuvering him for the test. With the oxygen mask on and the IV in his arm, he couldn't move to release the pressure. His parents and I laughed with relief as I loosened the gown and gently pulled his balls free. Then about a half hour later he croaked painfully, word by slow word, "Why is this happening to me?" He meant the frozen larynx that made him unable to talk, but Bernice burst into tears at the larger resonance of the question. "I don't know, Rog," I said. "I don't know why anything anymore."

  Yes, they told us briskly later that night, he did have PCP again and would have to go through yet another course of Pentamidine. I know we all had a terrible sinking spell at the news, and I recall Roger gloomily announcing to people on the phone over the next few days: "I have three different diseases now." I was a wreck as I called around the country to find out just how bad a third bout of PCP could be, and Craig comforted me with the information that two people he knew had survived five rounds of it. As Peter Wolfe later explained, the PCP protozoa probably never went away entirely, and it wasn't yet understood what made it flare into full infection. The major advance they've made since then has to do with the prophylactic dose to keep the protozoa dormant. Many now receive a weekly dose of Pentamidine spray, inhaled directly into the lungs, which lowers the rate of repetition. But that wasn't available during our time in the war.

  Since Roger would need to be in the hospital for another week, he asserted himself to get a change of venue, at least. One morning we moved him from 1020 to 1006, from a blue room to a peach room. I can still see that vinyl wallpaper in my sleep sometimes—the pulsating diamond pattern with a scroll border at the ceiling, blue or peach or beige. As a result of some benign bequest or other, Impressionist posters hung in each of the rooms. The Degas ballerinas that pirouetted all through the near-death experience had grown unbearably oppressive to Roger. In 1006 we settled for a placid Utrillo street scene.

  By now, in spite of the constant stream of medications and the piggyback IV equipment, Roger was free for hours and getting antsy, so we'd go for strolls in the corridor. The other end of the floor, 10 West, was a world-class center for bone marrow transplants, whose patients all had complicated immunity problems and spent long periods in the hospital. We soon had nodding acquaintance with all of them and the masks they wore and their falling hair. In the evening we'd go down to the lounge, and I remember playing a game of checkers one night, a game neither of us had played in so long that we had to think hard to remember the rule of kings. Halfway through the game, though we were playing desultorily and nobody was winning, Roger pushed away from the table and said, "I don't want to play this anymore. It's too upsetting." I knew exactly what he meant. We were so drained and shaken still that even the automatic strategies of checkers were too demanding. We sat back talking till an old woman with a cane came in, accompanied by a doctor, and he quietly broke the news to her that her husband had Lou Gehrig's disease. We couldn't scramble out of there fast enough not
to hear her shock and pain. The last thing she said as we fled was: "Doctor, we mustn't tell him."

  As soon as Dennis Cope began to talk about a release date, Al and Bernice were insistent that we had to have some temporary help at home, "at least until Roger gets on his feet." We started asking around—nine to five, prepare two meals for Rog, light housekeeping—but there was no way we could hide the nature of the illness, even if we'd wanted to, which we didn't anymore. From here on, there would be no euphemisms on Kings Road. But we quickly discovered that a certain Geiger-counter effect had started, relative to AIDS, among the service professions. No, none of the temp agencies could fill the bill; perhaps we should try a full-time nurse.

  Meanwhile Roger and I were worrying about money. He was keeping his office open and his secretary on salary, working as best he could by phone, his great tenacious goal to get back to his practice. Yet he wasn't even covering expenses anymore, and I was barely stealing an hour here and there with Alfred. We tried to assure the parents that we could do it on our own, though both of us remembered all too well the tension and craziness of the month before the darkness. Al and Bernice kept saying, "Paul, you've got to go back to work. You're the breadwinner now."

  Bernice planned to stay on for a week or so after Roger came home, but she wanted Al to get back to Chicago. He was eating all wrong, his triglycerides were up, and he needed to see his doctor. There's a peculiar poignancy to the parallel trials of parent and child caught in the calamity. Al and Bernice never complained about their own health problems, though I knew how deeply ingrained was the worry in Bernice, who had monitored Al's angina for twenty years. In any case, they would be out again at the end of January, on their way to Palm Springs. We began to talk as if Roger would be back to work by then, and we'd be driving to the desert for a weekend, just as we always had.

  An order was placed with the drug company for a two-week supply of AZT. For months we could never stock it any further ahead, as if they were making it in a kitchen lab with a two-burner output. We were told the drug would come in intravenous bottles, since a factory had not been retooled to produce a capsule. Apparently the drug had been on the shelf for years, awaiting the right disease, but it was a very expensive proposition to gear up to full market potential. The primacy of the market concern gives as good a picture as any of the chaos caused by the government in turning over drug research to private industry. But at least for the present we'd have our own piece of the rock. Roger would be drinking the drug directly out of IV bottles, three of them poured in juice six times a day.

  I asked Charlie to pick up a timer one afternoon on his way to the hospital, and he arrived with a sleek digital item about the size of a package of cigarettes, with a tiny chamber for pills. I have six friends now on AZT—two white-banded blue capsules every four hours—and sometimes I'll be with one of them and the beeping alarm will go off, alerting them to the next fix. The sound of it always knocks the wind out of me, signaling such a confusion of hope and last chances.

  And so we staggered home on December 11, with three shopping bags of drugs this time, and a warning that we must retain every last IV bottle and cap, to be returned when we came for the next batch. Burroughs Wellcome, the manufacturer, appeared to be quite paranoid about its trade secret. If we couldn't account for a bottle cap, who knew that we hadn't sold it surreptitiously to Upjohn? No question but that his homecoming was a blissful triumph for Rog, though there was still a shiver of disbelief in both of us, as if we didn't dare trust it yet. Meanwhile Bernice was indefatigable, appearing at our door at 7 A.M. so she could admit the nurse who came at eight for the final sequence of Pentamidine injections. Then Bernice would clean and cook all day, allowing me to huddle with Alfred at the computer in the study.

  We had come to a dead end on every lead in the help department, and Bernice's dawn-to-dark labors bore mute witness to the need. Roger was feeling more himself every day, but it was equally clear it would be New Year's before he could get back to the office. Then we had a lucky break. Calling the Los Angeles AIDS Project to see if they could give us a referral on a nurse's aide who wouldn't be freaked by "the situation," we discovered there was a state pilot program just beginning, to study the cost-benefit of in-home care versus hospitalization. It made no sense to keep people in the hospital at a thousand dollars a day when they weren't even doctor-sick but simply debilitated or recuperating. The alternative was to maintain them in their own homes, providing daily help at a fraction of the cost. We offered to pay our own way to get into the study, but were told there were no financial requirements to qualify.

  Next day we went down to the APLA offices on Santa Monica Boulevard, across from Plummer Park. Not an easy place to enter. I remember one of the founders of GMHC in New York telling Craig how he'd hate to need any of the services he'd created, not because it was demeaning to ask for help but because the issues raised were so awful—lost insurance, lost jobs, evictions, the full gamut of miseries. Roger and I had spent years blithely writing checks to such organizations, and surely there is magic in that as well. One does it in part to cover one's ass, knocking on wood: Please, not me.

  Now we sat on a battered sofa, staring across at a safe-sex poster, while I brooded about the germs on the grimy upholstery. Two men were cheerfully answering phones, coaxing people to ask the questions that had frozen in their throats. Then a counselor took us to an inner office for an intake interview. Roger answered all his questions simply and without self-consciousness. I was the one with the hurt pride. It was one of those irrational moments when I wanted to cry "Time out" and trot out Roger's degrees and a list of my credits, to protect us from the ignominy of it all.

  Thankfully, we qualified for the program. They would try to assign someone as early as Monday, the day before Bernice was leaving. We walked out of there relieved, our dignity remarkably intact. Through the trials of the next ten months our dealings with the Project were notably life-affirming, with a hands-on human touch that never wavered. When we got home, Roger called Sheldon to tell him we'd found someone, but when he told him where, Sheldon clucked with disgust and said, "Somebody's got to put a stop to this." Implying that we were stealing from the indigent, offended that we should be stooping to charity.

  I was so sick of people's opinions. Unsolicited advice comes pouring in from those who can't be really there, till you feel like a laboratory of other people's whims. We were having a hard enough time believing our life was still our own. Later that night, on our walk, I gnashed my teeth with anxiety. "What's happening to us?" I asked in desperation. "What are we going to do?"

  "Paul, we have to accept our fate," said Rog, firm and unsentimental. "There's no other choice."

  "But I can't," I whined, and I meant I won't. Yet even as I said it, it struck me how Greek Roger's attitude was. I can't express how small I felt just then, or how alone, as I looked at Rog in the dark and understood he had reached a kind of acceptance. I still wanted Greece to be sunny and exalted, with white stone ruins and statues of gods so perfectly human they breathed. Beauty was as far as I needed to go, and I wasn't equipped for the tragic design of fate.

  But being home was so seductive: Within days we'd started to make plans for Christmas. Craig and I had been leaving it open for weeks now as to whether he'd come for the holiday, and in fact he didn't decide for sure till the twenty-third. Now I began to coax him to make the trip, and Roger encouraged me to buy a tree and have people over on Christmas Eve, as we always did. We would keep the whole thing on a much smaller scale, but I think he figured it as a way for me to proclaim we were still in the game. He himself was eagerly making plans to be back to work right after Christmas, and I told Alfred we could go ahead with the horror script for Warner Brothers. All this AZT optimism was better than a Currier & Ives snowfall.

  I knew, of course, that Bruce had been gravely ill during all the weeks Roger was in the hospital. I even managed to check in every few days with Chana, in the hope that I could at least talk to Bruce
and let him know we had copped the AZT. I realized only later how carefully his friends were couching what they said to me. I had some indication that there were episodes when his mind wasn't right, but dementia was still largely undefined and unspoken, even in the AIDS underground. I heard that nurses had been brought in around the clock. But none of it struck me as fatal: It had been only a few weeks since I'd seen Bruce myself, and it was Roger, after all, who had just nearly died.

  Bruce wasn't even hospitalized, so I kept assuming he must be treading water, the way Roger had before his crisis. Surely one day soon I'd call and he'd actually answer the phone. But it was always Chana who answered, and she would say carefully: "Bruce's case is completely different from Roger's. He's been a lot sicker from the very beginning." She was trying to break it to me easy that he wasn't going to make it, but the subtlety went right by me. They obviously didn't understand how close as a shadow death could be and still you could squeak through and outwit it. In any case, it was only a matter of weeks before we'd force them to expand the AZT protocol. Bruce just had to hold on.

  I woke with a start on Sunday morning the fifteenth when the phone rang. I was sleeping in late again because Bernice was covering the morning shift, and this was the day I meant to go get the Christmas tree. But I panicked at the sound of the phone and scrambled out of bed, instinctively feeling I had to get it before Roger did. Then I heard him say hello from the back bedroom, and as I came out into the hall he gave out a low wail of pain: "Oh, no." I stood dumbly in the bedroom doorway as he looked at me in total defeat. "Bruce died last night," he said.

  I felt the same spurt of annoyance as when Ted called a month before to tell me Cesar was dead: Why are they bothering Roger? I had no time to mourn Bruce either. At one point I wanted to go over and see his sister Carol, who flew in from New York, especially when I heard she was asking for me. But I was afraid to walk the two blocks and be in the presence of death, afraid I might bring it back with me or see too much of the apparatus of mourning. If there had been a funeral I would have gone, but they decided to put off the memorial till mid-January.