Borrowed Time: An AIDS Memoir
Page 13
Cesar, whose major dietary concession was to cut back on his beloved coffee, called to report on the trip to Uruguay. He'd discovered for the first time that he, the penniless schoolteacher, could take eight people to dinner for thirty dollars in a country that was upside down from inflation. Meanwhile his mother kept assuring him he would be fine, and to prove it she picked a basket of quinces off a tree in the yard and stewed them up. She accompanied this with a long, rambling lecture on the fortifying power of the fiber of quince, which took care of all things viral. Cesar said he felt like writing an article for the New England Journal of Medicine on "The Properties of Quince."
One afternoon in April, I remember, I accompanied Roger to lunch at Ben Frank's, a coffee shop on the Strip, styled in the kidney-counter spaceship mode of the fifties. I nursed a cup of tea while he had a sandwich, then I coaxed him into dessert. But I had to leave him there to make a lunch meeting with one of the Manicurist principals, a hundred yards down the street at Sunset Plaza, where three high-toned cafes are tucked in among the killer boutiques. L.A. is a city of ludicrous contrasts on practically every block (what else is new?), but from Ben Frank's to Pasta Etc. is still a long hundred yards.
In the old days I would have been invigorated by the mad juxtaposition, but I sat at an outdoor table that day fragile as glass, listening to this movie jerk gargle about his current diet and other phantom problems. I didn't want to be there at all; I wanted to be back at the coffee shop watching Roger finish his pie. This part is not just AIDS, I know. People still have to do business when people they love better than life are sick, and they taste ashes in their pasta just as I did. None of us has a lot to say about the current shade of peppers.
Food was gauged now by its weight and mass, and otherwise all it promised was to let us break bread together. The weight of course becomes an obsession all its own. I recall Cesar telling me of the poignant weigh-ins at San Francisco General, when men who had aged decades in a year of AIDS, so frail they could barely stand on the scale, could still summon a cheer if the pound weight hadn't dropped. We'd broken our own good scale some years before, trying to weigh Puck, with Roger hugging the squirming dog in his arms. We were left with a wildly fluctuating dime-store model, which drove us crazy with readings plus or minus four. One Saturday morning I went down to Koontz and bought a proper digital scale, and we laughed at our own excitement as I pulled it out of the box. I made Roger strip down before he got on: 141. More than a new toy, it was a way of proving every day that things were stable. He'd regained the lost three pounds, and as long as we kept him at 141 we were winning.
Robert Frost: "Weep for what little things could make them glad."
Just before leaving the hospital, Roger had asked Cope how long a person could expect to go between infections. It varied a great deal from case to case, we were told: "Two months, three months, six months..." I longed for him to go on and fill the ellipsis and give us longer, but in fact it was all guesswork. I remember bargaining in my head when he said it, hungry for the whole six months. He went on to reassure us that the most important element was how treatable the infections were, with progress being made all the time. But time itself becomes so pregnant when it's hardened into a number that the downward spiral of infection ceases to be real. Time is the number you fight—two, three, six, all these laughable integers. Where had the tens and hundreds gone?
Turning back over the calendar, I find a crossed-out notation for April 11: Leave for Cairo. There is so much left behind, I know, in the line that strikes out Egypt. But on the day in question I wrote it off as indifferently as lunch with a marginal friend, the kind that is rescheduled over and over till it disappears. The new calendar had no Cairo, its only real appointments those that drew us closer to treatment. As time is money in business, time was medicine now.
We learned there was a final hurdle before Roger could be accepted in the suramin program. A viral culture would measure the blood level of Human Immunodeficiency Virus (HIV) in the blood. Some AIDS patients had been so exhausted by the disease, had progressed so far, that the virus no longer had any T cells left to kill. It had either vanished entirely or sunk so deep in the DNA that it could no longer be traced. If Roger had no sign of virus in his blood at all, an antiviral would be of no use. Thus began a waiting game as the culture slowly grew over several weeks.
When I took this test myself in July of '86, the viral culture still had a vampire edge. They draw the blood and rush it over warm to the lab, so whatever is alive will seize the culture medium. The test costs six hundred dollars, and since the insurance company doesn't consider it reasonable or necessary, I'm still trying to get reimbursed for it. The results proved to be a dazzle of euphemism: "borderline active." What a floating border that must be, like the icy line in the Bering Strait that separates Russia from the last Aleutian. At that time I was advised to start an antiviral of my own, and by then there was something to take pre-ARC. Just fifteen months between Roger's beginning suramin treatment and me on ribavirin. Now we know that stride could have been made in '82 or '83 if the government hadn't been playing ostrich. Spilled milk, people tell me; you can't undo the past. But can't we measure the spill?
Roger and I were blessed in the friends who knew the truth. Richard Ide and the Perloffs checked in regularly, encouraging us in the chase for treatment. They had us over and talked about it as much as we needed to, no more. None of them ever spoke a fearful word about the nightmare possibilities. They were willing to go step by step, taking their cue from Roger, and they understood perhaps better than I how much he didn't want to be seen as a sick person. Obviously it was more than his law practice that held the circle small. He didn't want to bring anyone down. Rather, after the battle of the first infection, he seemed to call his friends back to life as it was before the illness. Whenever we were together with one or another, I'd swim as best I could with the flow of good fellowship, saving my madness for telephone calls to my brother and Craig.
I think I would have been able to keep Star in the dark if she hadn't turned up in L.A. But her father died suddenly on April 15, and she had to fly to Honolulu for the funeral. When I talked to her in Hawaii, she said she'd like to stop off and see us on the way back to New York. As soon as I said yes, I knew I would have to tell her. Roger didn't want me to, and at the time I couldn't understand why. Not including how much I trusted her, how could Star in New York hurt his practice out here? It's only lately that I've begun to understand the other reasons: his pride, tenacity, modesty, all of them kinds of denial perhaps, but one mustn't forget that some are virtues. I comb back over these motives now with fine teeth, because I want to be as strong as Roger, as full of life. And stoic has not thus far been my strong suit.
At last he agreed that Star could know, but he was much more concerned the day she arrived that we take her out for lunch and let her talk about her father. Only after she'd told the whole story did Star and I go off alone. We took the dog for a run in the park at the top of Laurel Canyon. I remember sitting on the grass and crying as I told her, not two minutes after she'd enthused about how terrific Roger looked. Star knew me for eight years before I met Roger and always said the relationship burned off the misery of my youth and freed me to write. She understood the stakes here better than anyone.
Star told Roger she appreciated what an act of trust it was to let her in. As she pledged support, I could see how shy it made him. That night the three of us went to a party at Susan and Robbert's studio in Inglewood, full of art folk whom we didn't feel the need to impress and who didn't in any case take much notice of us, since we weren't buying. Pam Berg, a merry and quick-witted Englishwoman who's head of the Graphic Arts Council at the County, asked me how Cesar was doing. Then she spoke of a colleague of hers who was working for the AIDS Project, in the buddy program. His person with AIDS had been doing fine, but now he'd had his second bout of PCP, and matters looked dire. I recall wanting to run from the details, yet had to have the full picture first: how ol
d, sick how long, how early had they caught it, what treatment?
When we arrived home at midnight, I asked Star to finish a roll of pictures in our camera. There are eight shots of us on the sofa in the living room, with Puck barreling into a couple of them. These were the first since January, and I know it was in my head that we must have further evidence of us, though I tried not to think why. Roger's hair is grayer and thinner here than it was in Greece. His cheeks are slightly drawn, his color still pallid—not exactly what the French call a coup de vieux, but he'd aged five years. Yet, especially where he's smiling, his eyes are bright and the play of his smile vivid as ever. My own rictus of a smile is pretty frozen, all brave front. In one I'm looking at Rog as he smiles at the camera, which throws me back to a Sunday that spring when we went to see Purple Rose of Cairo. All through the movie, every ten seconds I'd turn and stare at Roger's profile in the dark, drinking him in, my ears acute as a wolf's as I listened for people coughing around us.
I see now we were back to the rhythm of weekends, making forays off the moon. One Sunday at the end of April we drove out to Malibu, to the Getty Museum. For once I'd actually made a reservation, instead of lying my way past the guard at the gatehouse. We'd watched the Getty extend its collections masterpiece by masterpiece ever since the museum opened, and we both found the Roman villa setting as bracing as an "E" ride at Disneyland. After we returned from Greece we promised ourselves we'd spend more time at the beach, and one perfect weekday we'd played hooky at the Getty, drifting through the antiquities, our eyes still dazzled by the white light of the real thing. In the Greek gallery we lingered over the fragment of a marble relief, a wounded warrior and his comrade, pure as a line of the Iliad.
Now, in April, we headed for the room upstairs that houses the illuminated manuscripts. A whole truckload of them had recently been acquired in Europe in a single bullion sweep. The Ludwig collection is kept in theatrical darkness, the only light within the cases, playing on the open books. We bent and peered in each jewel box, delighting in the microscopic artistry that adorned these gilded medieval windows. I always made sure no one was standing at a case before we approached, because I didn't want anyone breathing on us.
Craig arrived next day and stayed three nights. He'd visited friends in San Francisco and bought a dogleg ticket so he could see us too. He wasn't afraid to say it out loud: "I have to come now; I don't know how many more times we'll see each other." He knew the ground rules coming in. Because Roger had no idea that Craig knew of his diagnosis, it would have to be a two-tiered visit. If Craig was a little jarred not to be able to share the equal situation with Rog, he also understood the difference. He hadn't been through the full blast of an infection, and Roger had. In truth, with only three small lesions, Craig was suffering the metaphysical side much more than the physical. So in that way he was more equally matched with me than with Roger, though there I go with one of those comparisons that get you shot at sunup.
When the three of us were together, Craig and I let Roger set the tone, though I recall Craig talking about AIDS quite freely, given the strictures. Roger didn't avoid the issue at all, encouraging Craig to speak of it exactly as he had encouraged Star, by his willingness to listen and not interrupt. I suspect such openness in Craig and Cesar helped him to feel less alone as well, even if he was the silent brother. Still, it was a curiously schizoid few days—talking with Craig about nothing but AIDS whenever he and I were alone, piecing together every anecdote we knew, trying to figure patterns that hadn't been reported yet. Then Roger would come home from work, and we'd shift gears and cook dinner. Late at night after Roger went to bed, I'd sit upstairs in the attic bedroom, strategizing once again with Craig.
The Perloffs had asked us out to the ballet, a traveling company at the Wiltern Theater. The dancing was pretty overripe, and I mostly felt a sense of vast irrelevance at being there. How was it the world went on like this? Roger enjoyed himself with the Perloffs, but Craig and I were like two anti-intellectual, fidgeting children. It reminded me of Boston ten years before, when Craig and I were sometimes as raucous as fraternity mates—delayed youth, since neither of us had had a gay friend in college. Roger had been indulgent then about Craig and me at our noisiest, and he seemed the same way now, probably glad to see me laughing, however black the joke.
We came roaring home from the ballet, stopped off for quart-sized hot fudge sundaes and brought them home for a feed. By then the three of us were rollicking. There was a hilarious rush of pleasure at the prospect of immediate gratification. We joked about how quick it would be over, even as we gorged the ice cream. I ask Craig what else he remembers from that visit. The next morning, he says, when he had to get up early to catch his plane, he came downstairs half asleep. Roger was already "humming around the kitchen," getting ready for work. I keep playing that humming moment over in my mind, for I was still on the old Jean Harlow schedule, fast asleep. I love recovering any unguarded moment I might have missed, especially from a good day. It tells me all I need to know about how Rog was doing.
Craig's visit also slots it in my mind for a certainty that Rog had moved back into the front bedroom—our room. Craig could have taken the room by the pool and needn't have been exiled to the attic. But I wanted to give Roger all the space he needed, and partly too—irrationally—to separate Craig and his New York microbes. As a child I used to fantasize late at night that my bed was a raft set loose in a shipwreck. Of the many small victories of being restored to life, sharing a bed again felt like a real turn in the war. The deepest habit of normalcy is unconscious, as one of us would turn in sleep and hold the other, spoon fashion. This was the point of maximum stillness, proof that things were right again. Roger always averred that he'd invented the spoon on Sacramento Street after we met in '74, in order to ease my birdlike hyper nerves so I would fall asleep. Thus the middle of the night is when I feel the loneliness most. Even half-unconscious, I still turn and tuck in a spoon, preferring the memory trace to nothing.
We made love again in April too. I have to speak of this a little, though I feel the tug of my right to protect it, because I live in a generation of gay men from whom Eros has mostly fled. It's true that in time the holding close and spooning were more the ground of love than passion was. That is, we grew to need the repose of each other more than the heightened intensity. Roger was often too unwell and I too strung out to think of naked sex. But the burrowed place of holding on, where life was the same as ever, still could release an exhilaration that gathered to a peak. The first time Roger came after his hospitalization, he was almost crying even as he gasped with pleasure. England and the ballet might be over with, but not us.
Seven years into the calamity, too many gay men have lost the will to love. The enemies of our people—fundamentalists of every stripe, totalitarians left and right—have all been allowed the full range of their twitching bigotry. Though gay men have begun to understand it is something in themselves these upright men so fear, too many of us have internalized their self-hatred as shame. That the flesh and the spirit are one in love is none of the business of the celibate men of God, especially those who believe they rule the province of love. But the mission of the homophobe is more pernicious even than his morality. He wants every one of us to be all alone, never to find the beloved friend.
A man ought to be free to find his reason. Not that freedom alone will serve it up: it requires the gods' own fury of luck to get two people to meet. But when it finally happens, two men in love can't rejoice out loud—joy of the very thing everyone burns for—without bracing for the rant of prophets, the schoolyard bully, and Rome's "intrinsic evil." I try to remember that we fight as a ragged people to outlast the calamity so that others can sleep as safe as my friend and I, like a raft in the tempest.
Random memories of that April are spots of time. I can see Roger sitting at the desk in the study, writing a condolence to Star's mother, while I sit watching from across the room with nothing to do, till I run out and get him a m
ilk shake. When in doubt, feed. I remember a brutal op-ed piece in the L.A. Times, written by a doctor at San Francisco General, where he tried to make graphic just how desperate the disease was. Yes, fifty percent of those stricken were still alive, but only because they weren't dead yet. They would die soon enough. It's one of the times I recall Roger crying, and I own the idiocy of my response. I said, "Look, Rog, the worst that can happen is both of us will die," which really set him off. I try to remember that bit of backfire when someone says something off the wall to me.
I remember renting The Night of the Shooting Stars and both of us being enthralled by it. A lucky draw, since I was a wash at the video store, where I would dither among the Rambos and be unable to locate anything. My brother had urged me for years to see The Horse's Mouth, with Alec Guinness. We laughed all the way through—that great moment when Guinness disguises his voice on the phone, declaring he's the Duchess of Blackpool. Yet when it ended and the madly sane painter sailed away down the Thames, I started to sob uncontrollably: "I always thought I was going to be Virginia Woolf, and now look at me!" A comic enough disguise all by itself, if it weren't so sad.
Gottlieb managed to throw us both off balance one morning after an examination, with a soft-spoken exhortation: "Make every day count." Roger and I groaned over that one, comparing it to the moment in Great Expectations when Miss Havisham snarls at the terrified Pip: "Play!" Sam tried to place the doctor's remark in context. It didn't mean we were supposed to stumble around looking for roses to smell; rather, we had to learn to savor life as we used to—except now it could only be day by day, whether we liked it or not. I was acting as if I could keep Roger's situation stable only by staying depressed and morbid. If we laughed too loud, the Big Foot would stomp us. My guilt and doomsday magic were keeping us from reclaiming the fullest measure of life, and if it kept up, I would rob us after all of the love we had. The question I needed to face was: Where had Paul Monette disappeared to?