Borrowed Time: An AIDS Memoir

by Paul Monette

  So there was probably something of a mood swing among our loved ones—resigned one minute, inspired the next. Sometimes the end must have looked to be inevitable and soon, and other times, when we defied the odds, our team was as exhilarated as we were. Al and Bernice had asked Cope in April how long it would be, and he shrugged and said, "Three months, six months..." None of them ever told us that, and when I finally heard it I could only think defiantly that we'd made it the full six. Yet it was just as well nobody tried out the odds on us. For a while there, we were too busy winning to lose.

  Kreiger put us onto the Center for the Partially Sighted in Santa Monica, and we went for the first appointment early one morning at the end of May, shy and a little uncomfortable at having joined the disabled. Happily, the Center turned out to be a haven, and from the very first interview, with a painter named Joey, who was openly on the bus, we realized we were in the presence of even more pluck than we could muster on a good day. The operating principle was, if you had the smallest crack or shadow of vision they'd find you ways to see with it.

  Joey turned us over to Dr. McAllister, an ophthalmologist, who was able to fit Roger with eyeglasses that took the blur from his field of vision. Now he could see things for real again, not well enough to walk in a crowd, not strong enough to read, but he saw my face and the temple lights and the first gardenias. A week later McAllister showed us a closed-circuit television that could magnify a text so the letters were an inch high on the screen, white on black. He lent Roger a lighted magnifying glass, better than the one we'd bought at Koontz Hardware, so Roger could scan a menu or the headlines. Also a pair of wraparound shades to cut the glare. "Do I look like Miami Vice?" Roger asked me, deadpan. All of these advanced his vision, and equally our morale.

  The only difficult time I remember at the Center was the day we had to learn to walk blind. A soft-spoken Hispanic woman was our teacher, and she showed us the best techniques for a sighted person to lead around a blind person. Roger would grip my elbow, and we learned how to turn and negotiate narrow spaces and sit down. It was all presented in terms of the most rigorous practicality, completely unsentimental, grounded in retrieving some measure of the range of motion that sightlessness had stolen. Still, we were being taught to go into the world with a handicap, which is always a brutal transition.

  Intolerance, of course, is common law in America. You start to realize that generations of the physically challenged were kept at home and turned into invalids, thus compounding their loss of the world, because they were thought to be aesthetically problematic. For this pitched battle I know I was helped by the early experience of my brother's disability. However difficult the memory trace of wheeling Bob in public, however white hot my rage when people would stare at Roger, I'd somehow known all my life that the disabled have to claim their right to life hand over hand.

  After Roger died, his father admitted to me that once his son went blind, even with the reclaimed vision, Al figured the battle was over. He couldn't stand to see Roger hobbled like that and came just short of feeling his son was better off dead. I disagreed mightily when he said so and cited my brother's life of courage, then cited Roger himself. Because I know how unflinchingly he rose to the challenge, all through the summer. In his place I would have been long gone.

  So it wasn't an accident that we began going out again to restaurants in the evening. Patched together with AZT and a cone of tunnel vision, instructed how to steer through public places, we knew it was now or never. We'd only go to places that were familiar—Chinese, burgers, Sunday pancakes at Pennyfeathers—but that was exactly what we longed to get back, the quotidian occasions of the neighborhood. Whenever we'd visited Madeleine in Paris she always took us the first night to her favorite restaurant du quartier, which no outsider could possibly know about. It's a stretch, I know, to see Hamburger Hamlet on the Strip in quite that way, but it's how it felt to us after eight months exile. And once we had broken the drought with tentative forays of our own, we began going out with friends again.

  There were symptoms to deal with too, of course, despite the fort of normalcy we built against the blindness. Roger began to have fevers and sweats, one of the nonspecific gray areas of the disease that can be quite debilitating all on their own, frightening because they could be the beginning of some demonic infection or nothing at all. In the beginning Roger was more assaulted by fevers than by sweats. The zigzag graph of high temps and drenching sweats would start in earnest soon enough. Tylenol was sufficient for the time being to bring the fever down, but often Roger would wilt with a temperature after lunch and have to spend the afternoon in bed. That was the worst aspect of it, that it laid him low and stole so much time.

  One poignant day I remember, Roger had made an appointment to see an acquaintance about drawing up a will. Alexander was prominent in the L.A. art world, very cultivated and silver-tongued, and we weren't certain that he knew about Roger's situation. So Roger was a bit nervous that he'd neglected to mention his limited vision to Alex, or that he'd be taking notes with a tape recorder. It may even have been that phase of the AZT cycle where Alex would have had to wear a blue mask. I assured Roger the meeting would go fine, that I would be there to show Alex in and help explain the ground rules.

  Roger actually put on a shirt and tie, and after lunch sat in his leather chair in the living room to await Alex's arrival at 2 P.M. And he waited and waited, till three or three-thirty at least, before he conceded that Alex wasn't coming at all. I think I was more furious than Rog, who shrugged it off and took a nap. It turned out Alex had called the office in Century City and left word that he had to cancel. The lawyers in the suite still allowed Roger to use the main number and took messages for him, so as to give him the professional edge of a number that ended in three zeros. But this time someone at the switchboard had slipped up.

  The reason Alex had to cancel was that his friend Tom was dying in a hospital in Santa Monica, with what was first stonewalled as food poisoning. Later, I believe, it was leaked that Tom had been in India recently and must've picked up something awful—perhaps the same exotic jungle horror Cesar had once put faith in. Tom died about three weeks later. So I had to let my anger at Alex go, but I still can't stop seeing Roger sitting there dressed up and waiting, feverish and nodding off but determined to carry through.

  Al and Bernice were out again for a week at the beginning of June, and thereafter they came about one week a month. The fevers had so far been manageable, but there came a day when we couldn't bring it down from 103. Roger was feeling miserable. It happened that Dennis, the attendant, was off for a couple of days, and his replacement was one Scott Brewer, a registered nurse from Florida working at APLA as an aide because he hadn't got his nursing credentials yet in California. Scott was very skilled at making Roger comfortable with the fever, but he also thought we should bring Roger in to be sure it wasn't anything serious. "In" was all one needed to say anymore to evoke the world of the tenth floor. Scott managed to calm us down by saying he was fairly sure the problem was dehydration, since it was difficult to keep replacing the fluids lost to the fever/sweat cycle. When Cope concurred that we should come on in to the emergency room, Scott went with us.

  As we waited in a cubicle room for Cope, Roger asleep on the gurney, Scott told me his own lover had died a year before in Florida, barely in his early twenties. The diagnosis of PCP took over a week to pin down, so the drug that would've stopped it was given too late. Within days Scott lost his nursing job and was thrown out of his apartment. He came to California to depressurize with a friend, who two months later was down with AIDS himself; Scott stayed on to take care of him. Now he'd volunteered at APLA to work for a fraction of a proper nurse's wage because he believed he was necessary. He was.

  Roger was admitted right away and given the whole battery of medieval tortures, from bone marrow to spinal tap. Then we began the long grim wait for results, which trickled in over the next couple of days. In fact Roger turned out to be seriously de
hydrated and was put on an IV drip. But the symptoms of that dehydration—weariness and endless sleep, so little responsiveness the second day that I couldn't tell if he was disoriented or not—kept us all anxious and terrified. From me it demanded the same urgent coaxing and engagement I'd used during the days of the brain involvement.

  As each test came back clear I was more and more certain we'd pull him through, even as the temperature would swing to 103 or 104, followed by a typhoon sweat. The nurse had to monitor him almost constantly, and for the first time we engaged a private duty nurse to stay with him during the night. We didn't want him lying there chill with sweat and no one to change him, waiting for a floor nurse to make her rounds at night. I didn't realize just how frightened Al and Bernice were, or how off the wall was Sheldon's Malibu perception of it all. I only heard it afterwards, but on that second day he drove in from the beach, cased the situation in Roger's room, then took the parents downstairs to the cafeteria and broke it to them. "This is the end," he said. "You have to prepare yourselves."

  His worst-case prognostication didn't tumble out till later that night, when Cope was in and the crisis seemed to be turning. Roger was sleeping comfortably as Cope told the parents all the tests were negative. Rog was going to be all right. Al started to shake with relief and said: "We thought he was going today. Our hearts are breaking, Doctor. Not just for him but for this boy too." And he pointed at me across the bed. I demurred and assured him I was fine. All I cared about was that we'd come through. No need for any broken hearts.

  I think Rog was in for five or six days that time. I'd stay till 1 A.M. and talk to him while I changed his sweat-soaked gown, sometimes every hour at night. With the fever broken, he'd feel more comfortable. Then he'd perk up to have me there, and we'd fall into our private ironic shorthand. That's why the night sweats never scared me much, because I could see how hard the body fought, kicking free of the viral quicksand. And when the sweating was done with, there he'd be. I remember bringing him home on a Saturday morning, up through the back gate into the garden. He was choked with pleasure to see it again, even partially and dimly. For a while all he wanted to do was sit there and absorb it, the breeze and the smell of gardenia, the dog lying beside him, paws over the lip of the pool.

  Then began our best reprieve, most of the month of June. Of course we still had a fair amount of checking in to do. Twice a week we'd have to go to UCLA to have the blood drawn and visit the pharmacy.

  Everyone in the clinics knew Roger and me: we'd been in and out of there for a year and a half. And these people have a real connoisseur's appreciation of the fine points of war and the way men fight it. Even on bad days we tried to be up for them, the receptionists and technicians, for their morale was as much at stake as ours, and we had to help each other. The man who drew the blood at noon was Tonio, an unruffled Filipino who was as plainspoken as Rog. When he'd lean over to prick Roger's skin, they would talk quietly to each other, close as brother monks. Tonio was gay, as was a goodly percent of the hospital staff. Since the plague they had been laboring under an extra load of burnout, though their sympathy and compassion never seemed to fail.

  Then once a week we'd have to go see Kreiger. The infection stayed in check, and the millimeters held. Kreiger was pleased by the progress of Roger's vision, though it wasn't ever fast enough for us. Dr. Martin came to the house on Wednesday afternoons for the fifty-minute hour. Meanwhile Dennis the attendant was a necessary figure in Roger's everyday life now. He'd help Rog get up and dressed in the morning, serve him breakfast, massage his legs, sit with him by the phone dialing Roger's business calls. Dennis made it possible for Roger to gather himself and spend his liveliest hours in full command of his battered resources.

  And thus we had our own good time together—quality time, we call it in the mortal department, just as in the parental department. Always at midday for an hour, once I got going and before I'd meet with Alfred. Then again in the late afternoon, reading or out for a walk in the canyon. Then dinner and afterwards calling around to the family, and late at night the islands of time at 1 or 2 A.M., when he'd wake up and want to talk. Once we even called Jerusalem in the middle of the night, to wish Rita happy birthday.

  Besides which it was summer, and Roger got back in the pool again. At four or four-thirty, with the white sun streaking through the elm trees, he'd do maybe fifteen or twenty laps. Especially if the two of us were swimming at the same time, we were suspended from all the misery, twinned and afloat as we'd been in the dolphin blue of the Aegean. Quality indeed. It must have been around then that Roger said, with a pained wistfulness, "If only it could stay like this for a while." A while is the kind of modest goal you spend your life searching for.

  After midnight, during the hours when I used to sit and work, I'd be cleaning drawers and closets, tossing out masses of irrelevant clutter. When I worriedly complained to Sam that I felt as if I were throwing away the remains of people who'd died, he said it was entirely appropriate to clean out all the excess in one's fortieth year. The more I tossed, the more I felt I was following Thoreau's triple command: simplify, simplify, simplify. I remember going through drawers in the bathroom and finding Roger's contact lenses in their case. I realized he wouldn't ever be wearing them again, but was afraid to throw them away too, lest I discard the hope that held his vision. Two or three days later I finally steeled myself and stuffed the lens case in the trash, but guiltily, mentioning it to no one. And once I'd got rid of the lenses I combed the bathroom for every bottle of lens solution and all the eye paraphernalia that used to be so casually a part of Roger's kit. I also recalled a moment from ten years before: finding a card in his wallet not long after we met, which said, "In case of accident I am wearing contact lenses." Even back then I'd started to weep with dread, when nothing at all ever went wrong.

  The closed-circuit televisions of the kind we'd seen at the Center were a couple of thousand dollars. Sometimes one would come in secondhand, but there was a long waiting list for these. By now Roger had come to grips with and compensated for much of the narrow bound of his vision, but the business of being unable to read was terribly galling. We were still waffling about investing in a TV of our own when Roger had a call one afternoon from Susan Kirkpatrick, an old friend from Comp Lit days who taught at UC San Diego. By coincidence, a great-aunt of Susan's, recently deceased, had used exactly the kind of unit we needed, and it was gathering dust in Susan's attic. Her husband was on his way up to L.A. for a biology conference the next week, so he would drop it off.

  We set it up on a table in the brightest corner of the living room and began to play with its knobs and dials. I was so stupid about the closed circuit that the first few times I switched it on I tried to turn the volume up, when all it was designed to do was stare at a page and magnify it. Unfortunately, Roger was the only one in the household who could have made sense of the thing, but all he could do was squint at the blurred and tilted picture and tell us it wasn't coming through. We finally got it centered and focused right so he could read individual words, yet I remember countless occasions when he'd sit down and struggle unsuccessfully to make it render whole sentences. There was something wrong with the contrast, and the periphery of the screen was blank. I don't know why it took us so long—I only know I feel guilty about it—but it wasn't till late in the summer that we finally got hold of the proper serviceman. And by the time it was fixed Roger was gone, so all it ever really did for us was stand as a symbol of what might yet be given back, just slightly out of reach. After Roger died I arranged to have it donated to the Center in his and Susan's names, because I knew about that waiting list. "This will mean that someone can finish school," I remember Joey telling me.

  June was rife with visitors from out of town, and if they were coming to say good-bye they kept it to themselves. To us it was all serendipitous. Richard Howard and his friend David Alexander, a painter, came out from New York on the way to comfort a friend in San Francisco, who'd lost his lover after a long fig
ht. Richard read aloud to Rog a new poem, as well as a witty essay on baldness and a graceful obit for Jean Genet. We spent two lively evenings talking, and Richard was especially eloquent about Susan Sontag's Illness as Metaphor—a bracing caution about the scapegoating and self-blame that attach to certain diseases. We were all being assaulted now with the verbiage of self-help guerrillas who said gay men had brought AIDS on themselves. "I'm taking a course in miracles," as one West Hollywood airhead shared with me on the phone one night. "People pick their own diseases," he said, bragging that his lesions had faded to inconsequence.

  Sally Jackson, a woman I once roomed with in Cambridge, was in town on business and called out of the blue. "So how are you guys?" she asked enthusiastically, and then sat silent while I told her the whole terrible story. She was one of those people back east who hadn't heard Roger was sick, and now she came by and made us laugh, leaving in her wake volumes of material on imaging and healing, and orders to eat brown rice. None of which managed to annoy me, because she was so dear. Perhaps, when it comes to the self-help business, it's all a matter of the source. We'd had no problem learning imagery from Rita, and in fact we did eat more brown rice as the summer lengthened. But nobody picks his own disease—except, perhaps, the more rabid religions.

  I also remember Sally telling me over lunch that I wasn't going to get sick. Usually this bit of cold comfort made me quiver with rage, but I could see how she longed to make it all better somehow. The more I heard it the more I understood it as a need people had to believe the disease would stop somewhere—to save me if they couldn't save Roger. I try not to be offended by it anymore, and some dark side of me that lives under a rock presumably hungers for the assurance. Mostly it seems a necessary lie people tell so they won't go mad from the horrors of war.