Borrowed Time: An AIDS Memoir (17 page)

I don't recall that Roger had a problem keeping weight on after the first hospitalization. The Pentamidine may have quashed his appetite for a week or so, but I soon had the satisfaction of beefing him up. Regular nourishing, fattening meals are the best you can do, day to day, for a person with AIDS. No wonder the macrobiotic route is traveled with such elaborate attention to perfection. One rich man I know has a macro cook who comes to the house, and another has a box of macro delivered once a day by a Zen master.

I had my own obsessive ideas about food. I'd always been a closet vitamin freak, and for twenty years have begun the day with monastic grayness, downing a drink of soy meal and brewer's yeast in buttermilk. It tastes as bad as it sounds, and its austerity has never kept me from eating french fries and chocolate with abandon the rest of the day. I'd never managed to convince Roger to go the soy-and-yeast route. He ate heartily whenever he thought to and loved a full refrigerator, but he also had a graduate student's absentmindedness about meals. Especially for lunch, he often made do with a couple of dollars' worth of deli.

Now at last I got him to drink this glop of mine and scarf five or six vitamin pills. The totem vitamin at the time was lysine, an amino acid said to have some never-quantified effect on the immune system. Also zinc, which was severely depleted in people with AIDS. There would be times ahead when food itself seemed to become the battleground, and every wrongheaded frustration came to a head over a plate of eggs. But for now we had it easy, and Roger didn't mind indulging my steady stream of dietary hints and heaping bowls to go with them.

I was cooking in five nights a week, producing a string of fortifying meals that recalled Sheldon's pithy list of three months before, when losing a few pounds was cause for celebration. It turns out a home-cooked meal offers a double dose of magic. At the same time you're making somebody strong again—
eat, eat
—you are providing an anchor and a forum for the everyday. To the young and the impatient, dinner is something to be wolfed on the run, and the deadliest bourgeois picture of all is the same people in their same places at table.

Once you are beaten up or down by life, you begin to see why everyone longs for the dinner break, hungry or not, from Mother Teresa to men in trenches. Dinner is one of the very last corners, even in places like 1028.

We quickly turned away from anything too lean and rarefied. The finicky princess-and-pea meals favored by the foodies were suddenly insubstantial, and we avoided the grazing restaurants in favor of the all-American. But it wasn't nationalism, or even reverse snobbery. What we needed now was sheer bulk: spaghetti, baked potato, chicken with corn bread dressing. Then after supper I'd sweep us out of the house to go get ice cream. We had ceased to count cholesterol. That is a hobby for people who are in for the long haul.

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 old, 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.