Borrowed Time: An AIDS Memoir

by Paul Monette

  By the time Cope came into the clinic examining room, Roger and I were talking normally, if a bit subdued. There was a fragile air about Rog, worry under the shell shock, as if he'd just come through a train wreck without a scratch. Now as he sat in a straight chair and Cope prodded him with questions, he kept rubbing his hands along his thighs in a nervous tic. He answered every question clearly, but his voice was thin with emotional overload. Cope's instinct was that the whole episode had been an anxiety attack, triggered by an irrational fear that there might be a break in delivery of AZT. To be safe, however, they'd better admit him for a couple of days and have a neurologist examine him.

  While he made phone calls to set that up, Suzette came down from Immunology with our next cache of the drug. As she and I were making the exchange in the hall, I tumbled out my relief that all we were here for today was stress—though the unspoken fear of viral invasion of the brain had left me in a state of shock as well. Suzette was gentle and supportive as always, but she made some reference to how we would handle things' taking a bad turn. "Of course the two of you have talked about dying," she said.

  "No, we haven't," I answered with some defiance. "We talk about fighting."

  She gave it another shot, agreeing that the best course was hope, but even so we had to be realistic. The long-run chances were slim. But it went right over my head, so utterly would I not countenance any talk of death. Fortunately, the next two days' hospitalization bore out the notion of false alarm. Roger ran another gauntlet of spinal tap and bone marrow biopsy, both clear. There was a long session with a neurologist, who asked him to repeat a series of numbers, then showed him pictures of People types, all of whom Roger identified except the football player. How many fingers; eleven times six; who is Cher? He came through swimmingly, though the whole time I was as nervous as a mother at a spelling bee, telegraphing answers, heart in my mouth if he paused for a split second.

  The neurologist concluded there was nothing manifestly wrong with the nervous system. I was so relieved I could have kissed him, though in fact he was a chill sort, who didn't cotton one bit to my encyclopedic take on AIDS. He would not accept me as part of the situation. He was also an example of a curious phenomenon, the doctor with matinee-idol looks, about which my brother and I used to theorize at length. Bob had seen more beige hospital walls than I had, and we agreed about that certain species of good-looking specialist. Our theory was that pretty people got spoiled and coddled all their lives, and though their looks alone presumably didn't get them through medical school, they still went around acting fair-haired and chosen. This can be quite galling when you're not feeling very pretty yourself, in a shapeless gown with an IV in your arm.

  The next day they peered at an x-ray and decided there might be a slight congenital defect in the heart valve, which sometimes produces aphasic blips of the kind we had experienced, and for which they prescribed one baby aspirin a day, I think to thin the blood. The tiny orange tablet looked almost laughably cute among the heap of medications. It was the first hospitalization that turned out to be neither ravaging nor time-heavy, and the second night we were feeling celebratory, telling all our friends on the tenth-floor staff about AZT. I remember walking with David Hardy to Immunology so he could spring me a few days' worth of drug, and as he unlocked the cabinet that held the elixir and all the protocols, I felt as special as if I'd been invited into the principal's office.

  The day I went to pick up Roger was also the day of the office move from Century City to Kings Road. I was up early and directing the movers which files went in the back bedroom and which into the storeroom under the house. Roger's big walnut desk and credenza were put up on blocks in the garage, and a few days later I'd be frantically covering them with plastic trash bags, against a Manila rain that poured through the leaky garage roof. Except for three or four cartons that lay in corners in the living room and didn't get unpacked till six months later, I managed to fit all the files in the back bedroom so it could serve double duty as an office. Roger came home that day strong and optimistic, and it was just as well that he hadn't had to witness the move itself. With all his work in arm's reach again at last, the worst of the change was over.

  That night I had a call from Joel, who told me Leo was no longer living with him in Santa Fe but was now in the spare room at his sister's house in Hollywood. Leo was still on suramin—four months after the doctors at UCLA had stopped the protocol there—and was also taking another drug IV for the CMV infection in his eyes. Finally I broke the news to Joel that Roger had AIDS. Then I talked to Leo and went into automatic overdrive, full of the bracing data on AZT. When I asked him how long he'd be on the CMV drug, he said, "For the rest of my life." It did not sound like a long time.

  "Leo's better off there, really," Joel said before he rang off. "He doesn't really want me around. He wants me to get on with my life."

  Cope prescribed twenty-five milligrams of Xanax for anxiety, and the oval white pill got added to the daily pile. Rog never experienced anything again quite like that sudden overload, and even at the very end, when he did have flashes of disorientation, he never lost a word. I was anxious myself as a matter of course, though it never struck me quite as deep because I didn't bottle it up so much as pour it out. I think back on the blank attack now as the one break in Roger's stoic persistence, a man who would not otherwise blink at fate. Please don't let him lose his mind, I remember thinking, even as the alarm died down and every passing day restored him to his wit and quick engagement. The fear was right, but the prayer was wrong. He had something else to lose.

  In the first week of March we were both working again, stepping over each other in the two-tiered home office and fielding one another's calls. Rand Schrader dropped by one evening to visit, and as I was walking him down to his car, he told me a friend was staying at his place till he got his bearings. I knew Doug, his friend, had just been through a bout of PCP, but he was young and had managed to qualify for AZT with only one infection. Doug was still early as the pink of dawn compared to us. "But he's all right, isn't he?" I asked.

  It wasn't a matter of his corporal health, said Rand. Doug had come home from work the other night to find that his lover of four years had moved out during the day, without a word, without a note; they never spoke again. Rand hadn't wanted to mention it in front of Roger. A year and a half later Doug is still going strong on AZT, and the man who fled, a lawyer, is still nuzzling about in the legal gutters of L.A. Certain people have cut him dead, of course, but it's a big city out there, and a man can manage to leave no traces of the lovers he's left behind.

  We decided Roger was well enough to hazard a weekend trip to Palm Springs, something his parents had hoped for all winter, especially since the Israelis were still in residence in a condo across the pool. We set out Saturday morning, the first overnight outing away from Kings Road since the trip to the mountains half a year before. As it happened, the weather turned brutal, and when we came into the desert through a high-gust torrent of rain we somehow missed the turnoff we'd been taking for ten years. Then we got caught in a sandstorm that forced us to the side of the road, beating against the Jaguar like a steel band. We ended up in Banning, an hour out of the way, with me in a phone booth shouting to be heard above the wind. Roger had to vomit once in the ditch beside the road, while I tried not to yell. We arrived in the Springs under the weather, to put it mildly. Roger took to bed for most of the day we were there and scarcely ate. We all braved it out, being what family we could for each other. I felt schizoid as I veered from the front-room chat and the feeding rituals to check on Rog and wish we were home.

  This will sound crazy, but we promised as we headed back to L.A. that we'd be down again the next weekend, when Jaimee and Michael and the kids would be flying direct to the Springs from Chicago. Somehow we chalked up the sandstorm weekend to Roger's being off AZT. Since the two incarcerations over the white blood count, Cope and the protocol people had grown more shrewd at stopping the drug when the white
cells started to fall. This seemed to allow the count to recover again more quickly and, most important, didn't require protective isolation. Roger was off the drug during the ten-day period that straddled the two weekends in the desert, and we were either too naive or too preoccupied to worry that an infection might slip in during the off time.

  In between, we had a busy week working at home, and Roger was a good deal stronger. We decided everything would be fine as long as we avoided sandstorms. Midweek I was down with a two-day spell of diarrhea, and again I sealed myself off in the front bedroom, wearing a mask whenever I left it. I didn't bother with stool samples and the attendant lab terror, though the current bout was as propulsive as the previous September's. This time I refused to knuckle under with hysteria and grimly waited it out. Yet I wonder if, as I focused on myself for those two days, Roger was experiencing any symptoms we didn't track down.

  One night I went out late for groceries, since my schedule was firmly rooted now to a 3 A.M. bedtime. In L.A. you can do all manner of things in the middle of the night, if you don't mind the vampire pallor of your fellow insomniac shoppers. I came home and went in to Rog, who woke up and said, groggy and melancholy, "I just had a dream about Paris. Oh, I wish I could see Madeleine again." We hugged in the dark and talked about Paris, and what it would mean to plan for another trip, if only the AZT would give us a wide enough window. "We'll get there," I promised. "You'll see."

  Since Christmas we had been making do without an attendant from APLA, and we were proud of our independence. One of the pleasures of normalcy was that Beatriz was coming on Tuesdays again. She'd been cleaning house for us as long as we'd lived on Kings Road, and we'd watched her progress from a shy girl with fifty words of English to a savvy and vivid woman, comfortably bilingual, with property of her own in Mexico. Because I worked at home and was thankful for the diversion, Beatriz and I would always gossip on Tuesday afternoon. She was very close to her brother Lorenzo, who'd arrived in the States from Guadalajara before the rest of the family and helped all the rest get oriented as they came across the border.

  Lorenzo had been sick on and off for several months, including an extended stay in the hospital before Christmas, for diarrhea and general malaise. Beatriz and I had never used the "A" word about him, any more than we had about Roger in the year that had passed since the verdict. But though Lorenzo's diagnosis was longer in coming, due to the nonspecific nature of the pre-AIDS symptoms, Beatriz and I would talk whenever she came about the state of research and the elixir Roger was on. The medical terminology was difficult for her, of course, but she listened with absolute concentration, sounding out the Latinate names. We spurred each other on with optimism and spoke often about how changed we felt about the acquisition of objects. Whenever I see people's collections set out on étagères, with the price tags barely removed, I think of Beatriz dusting and shaking her head.

  Friday before the second desert trip, Roger's friend Tony Smith from Boston flew down for an overnight from San Francisco, where he was on the last leg of a trip around the world. I could hear the cold in his head when he called from San Francisco and asked him not to come. But Roger wanted to see him so badly, and Tony swore he'd be assiduous about wearing a mask, so I relented. The two of them had a marvelous afternoon together, and dinner was served in a way that was second nature now that the white count had become a red flag. Though I would eat with Rog at the dining room table when we were alone, if we had guests I'd eat with them around the coffee table in the living room, while Roger ate in state in the dining room, ten feet away. I was especially vigilant about this arrangement because of Tony's cold, but I never stopped worrying that he'd lift his mask and blow his nose. And when the chaos fell full force the following week, part of me never stopped blaming Tony, as if the germs he'd carried from India or Micronesia were to blame.

  The second weekend in the desert wasn't noticeably better than the first, especially for Roger. With Jaimee's family there the cast had doubled, and Roger made a real effort to be up and about—hunched over a bit and woozy, but brightening in the charged air of the children's wall-to-wall intensity. Those two nights we stayed at Rita and Aharon's place, and I stayed up late talking with them, because they were night owls like me. I also recall taking separate walks with Jaimee and Michael, where I stressed over and over how well Roger was compared to November and December. I felt as if I had to keep up everyone's spirits, and was convinced Roger had put out too much energy for Tony, and that's why he was so tired. Then, after I'd reassured them all, I'd go into the bedroom and sit on the twin bed and watch Roger sleep, trying to calm myself with his peacefulness as he lay curled in a spoon, a half-smile on his face.

  After two ten-hour nights of sleeping in, Roger appeared to have proved me right, for he was much perkier Monday morning as we all sat at breakfast. Actually, as I remember now, Roger got up even later than I and was having breakfast himself, while the rest of us hovered and watched him eat. As he finished his cereal, he said almost offhandedly, "My eye feels funny." Immediately I was alert, but I casually asked him to elaborate, not wanting to alarm the family. "It's like there's a shadow in it," he said, blinking as he passed his hand back and forth in front of the right eye.

  Though he shrugged it off, I said we'd call Kreiger when we got back to L.A., and the worry dissipated in the round-robin of family cheer as we made ready to leave. Michael, a rabid Cubs fan, gave Roger an umpire's cap from the National League for luck. Then all the way back to the city, I kept thinking of Leo on intravenous eye medication "for the rest of my life." A new drug that had come on line in recent months to battle cytomegalovirus was one of the few bright spots in treatment. Previously CMV had rendered a lot of AIDS patients blind in the early years of the calamity. Then I started obsessing about the cotton-wool patches that had floated benignly in Roger's retinal sky for a whole year now. Had one of those clouds begun to darken?

  Beside me, Roger kept squinting, and I asked if it hurt or was getting worse. No, he said, but the squinting didn't stop. When we pulled into an off-ramp Denny's for a bite of lunch, I called Kreiger's office at UCLA in a panic, but he was away for the day and his service was picking up. As soon as we got back to the city we had to retrieve the dog at the kennel, and he was hysterical. So we had our hands full unpacking and settling in again, and Roger needed to rest from the trip, especially since his fever went up that night. We put off the eye till the next day.

  I don't recall if Roger's vision was worse on Tuesday, but the fever was persistent, and now I was certain he'd picked up some kind of flu from Tony. Cope said that was entirely possible and told us to monitor the fever and check in by phone the next day. He knew how reluctant we were to come in for no reason at all, especially after the recent false alarm. As for the eye, since Kreiger would be out of town till Thursday, we made an SOS call to our ophthalmologist friend, Dell Steadman. He met us during his lunch hour at his office in Beverly Hills. As he gazed into Roger's eye with his scope, I held my breath the way I used to do as a child whenever we drove by a cemetery.

  No, said Dell, there was no CMV in evidence. The cotton-wool patches were stable. And since he could see no other problems, he suggested the optic nerve might be temporarily damaged by a flu or cold virus. Roger's vision in that eye had dimmed some more, but not dramatically. We went home relieved and tried to forget it, tried to go back to waiting for AZT, but the fever wouldn't go away, so the next day Cope suggested we'd better come in.

  The rest of the week is a blur of apprehension and horror. Kreiger and two other eye doctors examined Roger over and over, and though the business about the optic nerve made sense at first—by now Roger was seeing mostly shadows out of that eye—the retina began to show subtle signs of damage. Suddenly Kreiger wasn't satisfied. I could see he was puzzled and thoughtful, even as he concurred for a while that the vision would surely return—or perhaps he just neglected to contradict our own tense optimism. I don't know when he decided to put Roger on a high dose of acyclov
ir, the herpes drug. By then I was on the phone nonstop, trying to field all the info I could find about AIDS and the eyes. The problem was, there was no way to be sure it was a herpes infection, because you can't do a biopsy of the eye, except by autopsy. Yet Kreiger decided to treat it as if it were herpes, though he'd only know that he guessed right if the forward creep of infection stopped.

  I don't know myself what I was trying to find out with all my phoning—any anecdote would do, it seemed, as I pieced together a nightmare collage. I remember talking to a man who didn't know who I was, whose number was given to me by one of the Tijuana mules. He had gone blind only a few weeks before and was still choked with sorrow about it, yet he bravely told me his whole story—the misdiagnosis, the prolonging of treatment till it was too late, the breaking of the news, the blackness.

  I told him I was sorry and then about my friend. Yes, he said, he understood; his own friend had died just after Christmas. Among us warriors there is a duty to compose ourselves and pass on anything that might help, no matter how deep the grief. Two weeks after Roger died, a frantic acquaintance called to ask about the meningitis drug that hadn't worked for Roger, who died with it in his veins. Just the mention of the word took my breath away, as I answered questions about the convulsive side effects. But I thought of the blind man trying to help me save Roger's eyes, and so I stayed on the meningitis case till the crisis was past.

  By week's end the vision was effectively gone in the right eye, though Roger could still distinguish light from dark and make out the shape of my hand as I passed it back and forth like a metronome.

  Roger's parents had come up from Palm Springs, and they sat with him while I made calls from the corridor phone. We managed not to panic because the fevers had passed and Roger was feeling fine, and no one had yet told us the loss was irreversible. All my scattered research among the blind kept coming back to CMV, which wasn't our problem. No one seemed to know very much about herpes in the eye, but at least it was treatable, everyone said.