Read Borrowed Time: An AIDS Memoir Online

Authors: Paul Monette

Tags: #Paul - Health, #Health & Fitness, #Diseases, #Monette, #Medical, #Aids & Hiv, #General, #United States, #Patients, #AIDS (Disease) - Patients - United States - Biography, #Biography & Autobiography, #AIDS (Disease), #Public Health, #Biography

Borrowed Time: An AIDS Memoir (32 page)

BOOK: Borrowed Time: An AIDS Memoir
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"But that's not important," I'd hear him say bemusedly, though never by way of dismissal. He'd tease his friends about their timeworn frets and quibbles, then heap them back on himself with a laugh. The phone was becoming a lifeline to his past as people caught up with the secret, and the one-on-one conversations he loved best never failed to lift his spirits. There were times when the phone link was the last thing he was left with, aside from me.

Once more the box of decorations came down from the attic, and Roger, dozing on the sofa in the very position Cesar had assumed the previous two years, watched me put up the tree. I was too happy to have him home to dwell very much on the sad losses of the year in between. Richard Ide came over on Saturday the twenty-first, before leaving town for the holidays; he had an armload of packages, Roger having instructed him what to buy me for Christmas. Richard cooked lunch and announced as he served it to us on the terrace: "The secret of Sloppy Joes is the buns." Roger and I cracked each other up repeating that line for months, or sometimes we'd murmur it perfectly straight-faced while sitting in endless waiting rooms.

Those first few weeks of AZT, I didn't trust Roger to wake up in the middle of the night, or perhaps I just needed to be around for every dose. In any case, I bolted awake at two and six when I heard the beeper. I uncapped the bottles, poured the elixir into the juice and gave it to Rog, who happily stayed half asleep through the whole procedure. Every dose was a miracle to me. On the twenty-third I ran over to UCLA for the next batch, taking with me a bagful of empties. There was something chaotic going on with the protocol, so Suzette had to officially
not
give me the next week's supply under the table, while she untangled the red tape. As I was leaving, the doctor in charge came up and asked how Roger was doing, and I waxed eloquent about the drug, saying that everyone ought to be on it. He seemed worried that my enthusiasm would find its way into print. Several of the doctors, burned the previous summer by the Rock Hudson media show, were skittish that I was a writer.

Craig arrived the night of the twenty-third, and we went into immediate overdrive to prepare for fifteen guests on Christmas Eve. Craig recalls that Roger was in and out of the bedroom the whole week of his visit, up for a couple of hours, then down again for a nap. He seemed more fragile than frail, and of course he carried an aura of marvelous expectancy wherever he went, on account of the AZT. I realize now that a great change had set in after the long battle of autumn. Between mid-October and mid-December Roger had crossed a minefield, and the price he paid to get through to the other side was that now he would need to rest an hour for an hour of strength. But that was a bargain we were both so grateful to strike after the pass with death that we hardly noticed it at first. The cup was half full, period. If it took twelve or fifteen hours of rest and sleep every day to process coming back to life, that only made the remaining time more festive. The minor presents we wrapped were props and tokens of the occasion, but the real gift—we all knew this—was being consumed at a rate of eighteen bottles a day in the back bedroom.

Just before Craig flew to California, he'd banded together with four other men with AIDS to form a group very like a platoon. They'd all been dissatisfied by the groups they'd sat in on—too much negativity, whining and bitching about hospital crap, the blank-stare bureaucrats at every turn. Craig's group wanted to get out and find the magic bullet. None of their doctors seemed to agree about alternative therapies and the state of antiviral research. Since each had high contacts in one establishment or another, they figured they'd come together to share the scuttlebutt, the rumors and leaks. The group included Vito Russo, the incandescent film historian, all Brooklyn edges and a foot-wide grin. Since AZT was at the top of the list of what they wanted to know, part of Craig's visit was in the nature of a field trip.

"You're the AZT poster child," I'd tell Rog as he drank his dose.

The party on Christmas Eve was strange but not without cheer. Alfred and his friend Barry Miller arrived directly from Tom Kiwan's funeral. Roger slept in until everyone had assembled, then made an appearance for an hour or so, talking quietly with one and another as they slipped into a chair beside him. Almost everyone there had been coming to our house on Christmas Eve for years, and I expect that the great change between '84 and '85 was more difficult for them than for us. I don't think anyone fully understood how close we'd come to the edge in November or how charged with hope we were again. After a while Roger excused himself to lie down again, and most of the guests took their leave of him from the bedroom doorway.

What did we do that week? I've asked Craig since, and he can't remember us going anywhere. In one way it was intrinsic to the season that people came to us instead. Robbert and Susan dropped over on Christmas Day, and their gift to Rog was a photograph from Robbert's
Midwest Diary
, a plain of new-fallen snow, with telephone poles and a stop sign. It embodied the spare poetry Roger loved in art, from the wire circus of Calder to the cloister at St. Trophime. I think I must have had a certain need to stay close to the house, now that we'd finally been given the house back. I knew how dead and empty it became when Roger was in the hospital. There was also the matter of the four-hour rhythm and never wanting to miss the dispensing of AZT.

Mostly Craig and I just talked about being alive, and I swung back and forth through the house like a yo-yo, from living room to back bedroom, checking up on Rog. By now there was a fairly intense political consciousness evolving in New York, and we in L.A. were as far behind that as we'd been behind the disease in the first four years of the calamity. The indifference of the press remained deafening; AIDS activists liked to talk about the occasion when the
New York Times
devoted front-page space to a disease that felled seventeen Lippizaner stallions in Europe, when no story about AIDS had ever appeared on page one. The morass in Washington went on and on. And yet Craig and I insisted we'd keep fighting, become spies and outlaws if we had to, but we wouldn't go quietly.

I'd had the same caution as Craig's platoon about the focus of many AIDS programs, which seemed designed to help people write their wills and memorial services. The old medical chestnut—
Hope for the best, prepare for the worst
—had been truncated of its better half. Craig and I decided we didn't want to be in touch with letting go, not by a long shot. Yet we bristled, from the other side, at the growing "empowerment" movement, which tended to start with the assumption that people brought on their own illnesses. From there they moved to the notion that once you could fully love yourself the virus would evaporate like fog. The whole guilt-and-redemption trip was much too Catholic for my taste, besides which it seemed to consign those who died to the status of losers. Also, several of the self-healers were against any form of medication, while we were engaged in a major struggle for antivirals. Happily, these positions have become less rigid in the last year or so, and there is considerably more cooperation as people with AIDS dictate the agenda of the fight themselves.

But what I remember most about Christmas week with Craig was telling him how much I loved him. Loss teaches you very fast what cannot go without saying. The course of our lives had paralleled the course of the movement itself since Stonewall, and now our bitterness about the indifference of the system made us feel keenly how tenuous our history was. Everything we had been together—brothers and friends beyond anything the suffocating years in the closet could dream of—might yet be wiped away. If we all died and all our books were burned, then a hundred years from now no one would ever know. So we figured we had to know and name it ourselves, tell each other what we had become in coming out. I also believed that Craig understood what Roger had been through, as much as anyone could outside us. Every night the three of us gathered for dinner, lazy and content with Christmas leftovers as we recalled the snows of Beacon Hill. When Craig left on the twenty-ninth, the house was suddenly terribly quiet, in spite of Jack's post-Christmas hum of positive thinking.

My friend Star was planning to come through L.A. from Hawaii over New Year's, so I resisted the impulse to haul the tree out to the trash with all its ornaments. I certainly didn't relish boxing them up again, contemplating all the while who might be gone by next year. Then suddenly, on the thirtieth, we had a call from Dennis Cope, saying Roger's white blood count had fallen precipitously over the previous few days. He was to go off AZT immediately and come into the hospital for tests. It was a cruel upheaval—he'd been home only seventeen days—and we packed in stunned and wounded silence.

We didn't really understand that bone marrow suppression was a typical drug reaction. In any case, it required two days of renewed terror before they could establish for certain there was nothing else going on. Now we would learn the subtle enslavement of the numbers. The white blood count was healthy above, say, 3,000, but after a few weeks of AZT it would start to swing down. If they didn't halt the drug the count would fall below a thousand, leaving Roger at risk for all manner of bacterial infections. It tended to hover stubbornly at its lowest ebb for several days, then creep up again as we waited with mad impatience for the restoration of the magic bullet. When the count was very low, Roger had to be in the hospital under protective isolation. It was two weeks before he got home again.

But it took days for all of that to make sense, and for us to believe the count was really going up. I remember sitting on his bed on New Year's Eve and holding hands—the hospital unbelievably quiet, everyone who could still crawl sent home for the holidays—wondering if the roller coaster would ever stop, and resolving on the stroke of midnight that nothing mattered as long as we stayed together. We had finally had our introduction to the elaborate procedures of isolation. For the first time I had to put on a blue mask, like the ones the more jittery nurses had been donning for some time. Now everyone had to wear one for Roger's protection, and gloves and gowns in addition for the hospital staff. Cope told me I could do without the gloves as long as I washed my hands thoroughly. It took me only a matter of hours to reorient myself to the new crisis, keeping germs away. I washed my hands about every fifteen minutes, a habit I can't seem to shake even now.

Star, who visited on New Year's Day, recalls that Roger looked startlingly well, his weight up again and his color good. But I was a total wreck, and I railed at her for waiting a day to come by, for cornering Gottlieb in the hall to ask him if she was at risk, and she finally took me on a walk through the UCLA grounds and let me talk out the madness. I begged her to come to the house next day to help me take down the Christmas tree, and when she did she saw for the first time how transformed the place was, with its rows of medications and cartons of AZT. Before she left L.A. she wrote out a three-page list of daily things to do, an attempt to get me to focus and stop careening off the graph. I would stare at the list every morning—
PRESENT
R
OGER WITH AN UPBEAT ATTITUDE, WHEN EMOTIONAL DO NOT ACT RIGHT AWAY, GET EXERCISE
—and I'd stay on an even keel for a couple of hours, then collapse into panic again.

The big decision that couldn't be put off any longer was the closing of the office, and Sheldon was probably right to keep steering the conversation that way. The situation had grown too unpredictable: Roger couldn't run an office he couldn't get to. Sheldon felt it was time for him to pull back and devote his full energy to regaining his health. Within a few days Al was being similarly supportive, assuring

Rog it would be no sweat to reopen the office once he was on his feet—that phrase again. None of it went down easily with Roger, who saw the loss of his work as the beginning of the end. I remember him turning to me and saying in a helpless voice, fighting back tears, "But what about all my files?"

That one line is as painful to recall as anything not strictly medical during the whole course of the calamity. His files were the accumulation of his years in California, both his lawyering and all our common interests. There's an enormous amount of basic research and format material you have to have to service a private practice, and Roger was proud of the range of his files and their rigorous organization under Ricki. I kept thinking of the photographs on the office walls, so carefully chosen to startle but not intimidate, and the black leather Italian desk chair I'd given him when he opened for business.

The most coherent decision we made during the crisis over the office was that he bring all the files home and work from there. It was a bit unsettling to contemplate how this arrangement would work in practice, in a house where there was already one ragged sole proprietorship in operation. I couldn't imagine where everything would go, but as we talked about it more, Roger grew confident and ready to give it a try. At least he would have Ricki for a few more weeks, to separate files and pack up boxes. Meanwhile he was working in the hospital again, difficult though the logistics were. His drive and energy had returned, a more significant measure of his status as a lawyer than where he hung his shingle. Cleaning out drawers, I still come upon pages of yellow legal paper, full of notes on contracts and partnerships. Though they sound like Martian to me, if they're dated January '86 I read them through amazed, till I want to cheer at the sheer concreteness of them.

Once we understood that Roger wasn't actually
sick
with anything, we went back to singing the praises of AZT and how well it was making him feel. But things were veering into chaos again between the two of us. Roger's feeling stronger only served to accentuate his impatience at being holed up on the tenth floor, and I was trapped in a deadline with Alfred and squabbling every time we sat down to write. It's not that Roger and I were bickering, exactly. But I was overreacting again to every slight and turmoil, and he couldn't take it. A couple of times he bellowed at me to get out of his room, dissolving me in tears. Sam had been pushing for weeks now, ever since Roger came out of the woods, that he needed some kind of counseling. Fortuitously, a psychiatrist we knew—Ronald Martin—mentioned to Rand that he'd like to help if he could. The protective hospitalization finally tipped the balance for Rog, and he decided to see Dr. Martin once a week following his release.

BOOK: Borrowed Time: An AIDS Memoir
3.32Mb size Format: txt, pdf, ePub
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