Borrowed Time: An AIDS Memoir

by Paul Monette

  The visit Rog took greatest joy in during the good month was from Peter Metcalf, an old buddy from Harvard who taught anthropology at UVa. Peter was born Cockney, grew up in New Zealand, and lived in Borneo once for a couple of years to study a Stone Age tribe. He arrived in L.A. when Roger was feeling most energized, when his vision had clarified to the highest degree it reached after the operation—maybe thirty percent of the left eye. Peter was an inexhaustibly antic man—"The only thing I ever wanted to grow up and be was a pirate"—and he and Roger reveled in old jokes and caricatures. Because he was also handy, we steered Peter around to various things that were falling apart in the house, which he fixed with dispatch. A girlfriend of his who taught anthro at an Ivy League school had told Peter that eight members of her department, grad students and faculty both, had AIDS.

  Peter was troubled to see the goldfish struggling for breath in his spherical bowl, and he announced that we must go get Schwartz a proper circulation pump. For some time I had been operating on the theory that Schwartz had to fend for himself. I cleaned his bowl once a week and fed him his dead flies, but that was about as far as I'd go. So it was truly an otherworldly errand to go to the tropical-fish mart, whence Schwartz himself had come, for a pump and a bigger tank. Peter busily set up the new pet exhibit, and now Schwartz swam around the tank with delirious energy. Within a week his gold had come back shiny again. This mattered because Roger could see Schwartz through most of the summer if he peered close to the glass.

  Peter also went with me to buy big-watted bulbs, which we screwed in all the lamps and overhead sockets where Roger sat at night. But the moment that clutches at me still happened the next afternoon, when the three of us drove up to Laurel Canyon Park to run the dog. There had been a great storm of protest at the park over the issue of leashing dogs. A few years earlier the dog people had reclaimed the park from bikers and druggies, so they figured their dogs had dibs. The county disagreed, and you couldn't go to the park without confronting a barrage of canine agitprop and petitions to sign.

  We'd been telling the park saga to Peter, and when we got there he took Roger's arm as we headed out onto the knoll. There was a sudden ruckus of leashless dogs, and Peter turned to look at them, for a moment letting go of Roger. Peter and I were watching the dogs, and Roger walked into a tree branch, which poked his forehead—didn't break the skin, but he cried out, startled. Peter and I spun around in dismay, to see Rog clutching his head. A couple of people who didn't understand there was blindness here started laughing. The sharp end of the branch had poked not two inches above the eye we'd been fighting three months to save. From then on I would tell myself over and over, whenever I walked with Rog outside, to stay alert.

  On Monday night, as Peter and I were leaving for the airport, he went in and gave Roger a last hug. Roger cried for a second, then grinned in a puckish way. "I promise not to fall off my perch," he said.

  If constant vigilance about food had become second nature to us, we had to be equally alert now about fluids. The sweats and fevers waxed and waned through the summer, but even so Roger had to get into the habit of drinking a glass of water every hour, or lemonade or Ensure, a potent nutritional supplement. If nothing else, he had to counteract the effect of all that medication on his kidneys. It can be a wearisome business when it seems every swallow of water is another kind of medicine, with its own rigorous schedule. I can see how people debilitated by AIDS let either the food or the fluids go, it all becomes such a chore. That is, it requires a team effort. The side effect of so much water was that he tended to have to piss all the time. He began to keep a plastic urinal bottle beside the bed, so he wouldn't always have to be getting up at night.

  Did ail this mean he was more of an invalid now? I don't think that's how it felt to either of us. It was too peaceful being at home. We were so grateful having our time together, plus the excursions and visitors, that the summer bore the character of a recuperation, like taking a rest cure. Objectively, of course, the narrowing of scope and a life that was mostly bounded by the house were skating nearer and nearer to the thin ice of a hospice. But that is to forget how much we had been through—upheaval and exile and suffering—and what a luxury it was to do nothing much at all. I remember several evenings in June, lying in bed beside Rog and reading from the Duino Elegies of Rilke, and the two of us sighing with rapture over the waves of feeling. Another time I was moved by a profile I'd read in The New Yorker about Bishop Moore, and read to Roger a passage from a memoir Moore had written about coming home from war:

  A man who has been to war will never be the same, for he has lost the virginity of living around the edges of life, and in the long gray waste of combat has had crushed his belief in smaller things.... It is enough for a man to live cleanly and quietly in peace with a few friends.

  That is what a whole generation of gay men are doing, as they care for each other and bury each other and take what respite they can in between. It all depends how close it has touched you, of course, how much you then feel that your near relations are all you really have. Only in the most extreme cases are people cashing out to go retire in a peaceful place, but I know four who have. Fast-track careers and the powers of money are the first to go, once you have been in the war.

  John Orders used to tell us about his friend Lee, who died a few years ago in his late sixties—Methuselah time to us. Lee had survived his lover by a few sad years, and said to John once, "All that will matter to you when you're old is how much you've loved." That is as true of sick as old. When the summer was full, it felt as if we became a peaceful place for our friends to visit. Roger and I always used to talk about getting to a point where we could take whole seasons off—a farmhouse in Tuscany or Provence, with a string of invitations issued to all our friends so they would stream through and taste the pure empyrean with us. We'd done that once in Big Sur, rented a house by the crashing surf and shuttled five or six friends to visit. Since we wouldn't be doing the Provencal spring or the Tuscan autumn, we made do with the summer of Kings Road, for a while anyway.

  And if Rog was something of an invalid now, held down by his lower energy and the shadow tunnel of his one good eye, all of that could be wiped aside by the briefest glimpse of what remained. We were walking one bright noontime on Harold Way, about fifty feet short of the Liberace gates, when Roger turned and peered at me. "I see you," he said softly, his lips curling in a smile. I laughed with delight, and we climbed to the top of the hill as if we could see to Africa.

  Roger's parents were amazed and delighted at how well he looked—how well he saw—when they came at the end of June. It was probably the moment of peak efficiency for our various coping systems. Roger's law assistant, Stan, was coming a couple of afternoons a week, and though there was some distress over the dyslexic tendencies of the letters he typed, he was keeping Roger current on five or six ongoing legal matters. We were entertaining friends practically every day—I mean visiting with them, not feeding them as we used to. But there was a casualness and ease about Roger as he visited with people now. The first night Al and Bernice were in town we had them over for chicken, the four of us around the table, bright light above it, no masks and no one in bed.

  They took him one day on an errand that would have had me bouncing off the walls, to the Social Security Administration to apply for disability benefits, amounting to two hundred dollars a week or so, which APLA had paved the way for bureaucratically. That night Roger was feeling well enough to go out for dinner, and we took the parents to Musso & Frank's in Hollywood because they loved its downtown funk. We were seated in the paneled red-leather bar, and though we would have preferred a booth, it happened that Sean Penn and Madonna were sitting at the next table in jeans and black leather jackets. I told all the Horwitzes to take a discreet look. I remember Roger squinting to take them in, and then saying, "Who are Sean Penn and Madonna?" Al and Bernice didn't know either, and it waited till they told six-year-old Lisa when they got back to Chicago before anyone got excit
ed about it. But then Roger was always blissfully unaware of pop stars—the whole phenomenon went right by him. In '75, when we first visited Sheldon, he took us through Bel-Air and slowed at a pair of gates imposing as Blenheim. "Cher's house," he said. And Roger turned and whispered to me, "Who's Cher?"

  It must have been during the June visit that Roger and his father were sitting alone in the living room one afternoon, and Al asked Roger what he would like to do "if something happens." Would he want to come back to Chicago? No, said Rog, he'd like to stay in California: "I've had so many happy years here." Is nine so many? I'd said to him maybe half a dozen times in the last twelve years, "I want us to be buried together, Rog. I don't want to go back to Massachusetts." I don't recall if he shrugged or nodded or answered me, but whatever it was, it was low-key affirmation, as if it wasn't an issue that mattered a lot to him. About a month after that exchange with his father—unknown to me—I stumbled out something about funeral arrangements. We were stopped at the light at La Cienega and Santa Monica, and I said we'd never really talked about what either of us wanted at the end. Roger pulled back with a certain distaste and said, "You take care of all that." From such fragments you have to make your way when the sky goes dark.

  Were we sad? Not after a month of respite. We were just going along. I recall watching the hoopla that attended Liberty Weekend, and going in and giving Roger updates from ABC. We reminisced about '75 and '76, the Fourth parties on the gravel-and-tar roof at 142 Chestnut, looking down on the Charles and the Hatch Shell, where the Boston Pops held forth to half a million people. We hadn't required the television then to tell us how fine the light show was. On the fifth of July in '76, Cesar had departed for California to start all over. Before he left for the airport he scribbled a note in my journal, thanking me for the party and the "happy ending" to his years in New England:

  If later on, as we read this, we might think "How happy we were then!" at least we'll have that. That as we lived them, these moments, we knew they were important, and that's all there is.

  Ten years later, Roger and I were sitting on the front terrace having knockwurst and baked beans for supper, the summer light fading slowly as neighborhood firecrackers bulleted the canyon and revelers started to honk below on Sunset. Roger looked out through the coral tree—no, not so much looked as turned to the breeze—and he said, "We're living on borrowed time, aren't we?" "Yes. Except lately we seem to be borrowing an awful lot." It was only a few days later that Kreiger flashed his glass at Roger's eye and announced with calm dismay that the infection appeared to be moving again. Had I neglected to hold my breath when he made the examination? He told us we'd have to increase the acyclovir considerably, and the mode of delivery would have to be by IV. We were too aware of the need for immediate action to worry about the implications or the logistics. Cope and Kreiger quickly conferred, and they told us the IV could be administered at home by visiting nurses. They would help us make arrangements through a service for someone to come three times a day. There was some hope the course of the medication would only be a week. I remember, driving home from Kreiger's, that the most Roger could muster was a weary shake of his head and a mordant "Oh, God."

  But we quickly got used to the schedule because we had to, and Roger had extraordinarily charmed relations with the group of nurses. We liked their style, these women who moonlighted at home a couple of days a week and let their hair down and dished every hospital in the city. Roger of course was the one who had to go through the needle sticks, as the IV apparatus was changed from vein to vein every few days, left arm to right arm. He would purse his lips in a whistle and suck in breath when the needle went in, and didn't complain or dwell on it.

  But after about a week of treatment, the condition of his veins was a real problem. Acyclovir was very caustic, and the veins in Roger's arms were already shot from so much IV. The vein would "blow" sometimes after only a couple of doses, and then a nurse would have to search for another, sometimes even dig for one. For a while at least, we were able to count on the skill of the best of these women, who could slip a needle right in the first time. But the nurses themselves began to raise the issue of Roger's getting a catheter implanted in his chest, where direct delivery of the medication into the artery precluded the problems of the collapsed peripheral veins. He'd find it so much easier, they said, and who knew what other medication he might need in the future?

  We were not big fans of future talk. Roger was adamant: Under no circumstances would he go through catheter surgery unless it was absolutely necessary. If the acyclovir was going to be short-term, he would steel himself to the needle sticks. Compared to the catheter's invasion close to the heart, the discomfort of the bee stings was tolerable to him, though I would flinch if it took more than one stick to find a vein. The problem was, we saw Kreiger every week, then twice a week, and he kept saying the same thing. The infection was holding back again, but he didn't dare withdraw the acyclovir. We tried not to plead about the trouble, expense and pain of the IV, and Kreiger certainly didn't advocate the Hickman catheter implant, but he couldn't in conscience stop the drug.

  The vein situation grew more intractable as the days passed, especially when a new nurse came on, or one who had a lousy needle technique. One Saturday midnight the weekend nurse was clearly freaked about AIDS. She missed the vein a half-dozen times, till Roger was unhinged from the stress and discomfort. I pleaded with her to call someone else, but she finally slipped in a tiny butterfly needle, something she'd use for a baby. "This man don't have any veins," she said as Roger dozed through the IV, exhausted from the trauma.

  Then we found out we'd used up all the nursing privileges covered by Roger's insurance, and we'd have to start paying for the nurses ourselves. I think it amounted to a thousand or fifteen hundred a week, and now we seemed to be more and more assaulted by the system we'd bought into, and yet there was no way out of it. Sometimes there was a glitch, and nobody showed up. Then I'd be frantically on the phone, while various answering service drones informed me it wasn't their problem, and why didn't we go to the emergency room.

  One mid-July night we had to. Cajoling and whining at the service did no good, and we were afraid if we missed a dose it might turn out to be the final branch that poked the eye. So we went to UCLA at 1 A.M. and didn't get home till after five. And when Roger was finally sleeping in the cubicle at Emergency, the drug going in his arm, I took a walk around the campus—brisk and intense as the walk I took the day of the eye surgery, the same route even. But this time feeling utterly numb, just trying to get through the one night and sweat off some of the pounding anxiety.

  It's hard to describe the strange double nature of the house in July, for if all this arduous drama over the IV was constant, three times a day for an hour, we also put it aside in between, or what was the point of being home? The friends still came, we still stepped out for dinner. We went after the windows of time with renewed intensity, seeing by whatever light was left. Alas, Roger was realizing with a growing sense of fatalism that his sight wasn't going to come back any more than it had, which wasn't much. Not quite shadows, not quite blurred, but only vision enough to see at home, where everything was the same, where the furniture is so actual it furnishes one's dreams.

  We'd always have to be back by ten-thirty or eleven, when the night nurse would be coming by, so there was a Cinderella clock ticking behind every foray now. One night Kathy Hendrix had us to dinner with four or five friends, but it was difficult for Rog to separate so many voices, and his isolation tired him. After dinner Charlie passed around pictures of his new puppy. When they came to me I described each one to Rog and then passed it on, till everyone was sad and introspective, full of hollow dog remarks but thinking about blindness. We got home a bit late, or the nurse was early, and she had a tantrum at having been kept waiting. Roger shook off the Nurse Ratchit reprimand, but I was pissed, sick of the tyranny of their system. Besides, they couldn't get the goddam drug in his veins. Yet I made no recommendation f
or the catheter implant, because I kept praying the need for the drug would be over soon.

  On Sunday, July 20, there was a black-tie dinner at Sheldon's house for all those who'd sponsored tables at the last Gay Center dinner. It was a thank-you party designed to get the ball rolling for the next fund-raiser. During the week or so before the twentieth we kept shying away from saying we'd come. The IV business was too intense, and we had no idea how Rog would feel. But Sheldon gave us the leeway to decide at the last minute, and when it turned out to be a beautiful day we decided we were in the mood for a midsummer jaunt. So I hauled out the tuxes. Roger couldn't fit into his pants—his weight was steady at 147/148, and he had a belly now from all the rich food. So he had to wear my pants, and I was able to suck in my gut enough to wear his. Since his tux has a satin finish and mine is a wool worsted, we were very Mutt and Jeff in the fashion department. Yet there was something so giddy and promlike about the dressing up, even the running around passing the pants back and forth, that we drove to Bel-Air in a jocular mood.

  Still, it was a wearing business dealing with the crowd and the whole choreography of the event. We walked across the living room, Roger on my arm. I nodded to various people, and Roger didn't, of course. Our brothers looked over at us soberly, but stunned and frightened too: There but for fortune... We made it out to the terrace; the dinner would be served there and the light was best. We stood by the wall where it looks out over an unbelievable view at sunset, Mount Baldy to Catalina. Roger smiled at me shyly. "Well, here we are." Then Sheldon's current friend came over and gave us an ostentatious greeting, with a stage kiss to Roger's cheek that made me want to claw his eyes out, I was so afraid of the germs.