Borrowed Time: An AIDS Memoir (31 page)

As soon as Dennis Cope began to talk about a release date, Al and Bernice were insistent that we had to have some temporary help at home, "at least until Roger gets on his feet." We started asking around—nine to five, prepare two meals for Rog, light housekeeping—but there was no way we could hide the nature of the illness, even if we'd wanted to, which we didn't anymore. From here on, there would be no euphemisms on Kings Road. But we quickly discovered that a certain Geiger-counter effect had started, relative to AIDS, among the service professions. No, none of the temp agencies could fill the bill; perhaps we should try a full-time nurse.

Meanwhile Roger and I were worrying about money. He was keeping his office open and his secretary on salary, working as best he could by phone, his great tenacious goal to get back to his practice. Yet he wasn't even covering expenses anymore, and I was barely stealing an hour here and there with Alfred. We tried to assure the parents that we could do it on our own, though both of us remembered all too well the tension and craziness of the month before the darkness. Al and Bernice kept saying, "Paul, you've got to go back to work. You're the breadwinner now."

Bernice planned to stay on for a week or so after Roger came home, but she wanted Al to get back to Chicago. He was eating all wrong, his triglycerides were up, and he needed to see his doctor. There's a peculiar poignancy to the parallel trials of parent and child caught in the calamity. Al and Bernice never complained about their own health problems, though I knew how deeply ingrained was the worry in Bernice, who had monitored Al's angina for twenty years. In any case, they would be out again at the end of January, on their way to Palm Springs. We began to talk as if Roger would be back to work by then, and we'd be driving to the desert for a weekend, just as we always had.

An order was placed with the drug company for a two-week supply of AZT. For months we could never stock it any further ahead, as if they were making it in a kitchen lab with a two-burner output. We were told the drug would come in intravenous bottles, since a factory had not been retooled to produce a capsule. Apparently the drug had been on the shelf for years, awaiting the right disease, but it was a very expensive proposition to gear up to full market potential. The primacy of the market concern gives as good a picture as any of the chaos caused by the government in turning over drug research to private industry. But at least for the present we'd have our own piece of the rock. Roger would be drinking the drug directly out of IV bottles, three of them poured in juice six times a day.

I asked Charlie to pick up a timer one afternoon on his way to the hospital, and he arrived with a sleek digital item about the size of a package of cigarettes, with a tiny chamber for pills. I have six friends now on AZT—two white-banded blue capsules every four hours—and sometimes I'll be with one of them and the beeping alarm will go off, alerting them to the next fix. The sound of it always knocks the wind out of me, signaling such a confusion of hope and last chances.

And so we staggered home on December 11, with three shopping bags of drugs this time, and a warning that we must retain every last IV bottle and cap, to be returned when we came for the next batch. Burroughs Wellcome, the manufacturer, appeared to be quite paranoid about its trade secret. If we couldn't account for a bottle cap, who knew that we hadn't sold it surreptitiously to Upjohn? No question but that his homecoming was a blissful triumph for Rog, though there was still a shiver of disbelief in both of us, as if we didn't dare trust it yet. Meanwhile Bernice was indefatigable, appearing at our door at 7
A.M.
so she could admit the nurse who came at eight for the final sequence of Pentamidine injections. Then Bernice would clean and cook all day, allowing me to huddle with Alfred at the computer in the study.

We had come to a dead end on every lead in the help department, and Bernice's dawn-to-dark labors bore mute witness to the need. Roger was feeling more himself every day, but it was equally clear it would be New Year's before he could get back to the office. Then we had a lucky break. Calling the Los Angeles AIDS Project to see if they could give us a referral on a nurse's aide who wouldn't be freaked by "the situation," we discovered there was a state pilot program just beginning, to study the cost-benefit of in-home care versus hospitalization. It made no sense to keep people in the hospital at a thousand dollars a day when they weren't even doctor-sick but simply debilitated or recuperating. The alternative was to maintain them in their own homes, providing daily help at a fraction of the cost. We offered to pay our own way to get into the study, but were told there were no financial requirements to qualify.

Next day we went down to the APLA offices on Santa Monica Boulevard, across from Plummer Park. Not an easy place to enter. I remember one of the founders of GMHC in New York telling Craig how he'd hate to need any of the services he'd created, not because it was demeaning to ask for help but because the issues raised were so awful—lost insurance, lost jobs, evictions, the full gamut of miseries. Roger and I had spent years blithely writing checks to such organizations, and surely there is magic in that as well. One does it in part to cover one's ass, knocking on wood:
Please, not me.

Now we sat on a battered sofa, staring across at a safe-sex poster, while I brooded about the germs on the grimy upholstery. Two men were cheerfully answering phones, coaxing people to ask the questions that had frozen in their throats. Then a counselor took us to an inner office for an intake interview. Roger answered all his questions simply and without self-consciousness. I was the one with the hurt pride. It was one of those irrational moments when I wanted to cry "Time out" and trot out Roger's degrees and a list of my credits, to protect us from the ignominy of it all.

Thankfully, we qualified for the program. They would try to assign someone as early as Monday, the day before Bernice was leaving. We walked out of there relieved, our dignity remarkably intact. Through the trials of the next ten months our dealings with the Project were notably life-affirming, with a hands-on human touch that never wavered. When we got home, Roger called Sheldon to tell him we'd found someone, but when he told him where, Sheldon clucked with disgust and said, "Somebody's got to put a stop to this." Implying that we were stealing from the indigent, offended that we should be stooping to charity.

I was so sick of people's opinions. Unsolicited advice comes pouring in from those who can't be really there, till you feel like a laboratory of other people's whims. We were having a hard enough time believing our life was still our own. Later that night, on our walk, I gnashed my teeth with anxiety. "What's happening to us?" I asked in desperation. "What are we going to do?"

"Paul, we have to accept our fate," said Rog, firm and unsentimental. "There's no other choice."

"But I can't," I whined, and I meant
I won't.
Yet even as I said it, it struck me how Greek Roger's attitude was. I can't express how small I felt just then, or how alone, as I looked at Rog in the dark and understood he had reached a kind of acceptance. I still wanted Greece to be sunny and exalted, with white stone ruins and statues of gods so perfectly human they breathed. Beauty was as far as I needed to go, and I wasn't equipped for the tragic design of fate.

But being home was so seductive: Within days we'd started to make plans for Christmas. Craig and I had been leaving it open for weeks now as to whether he'd come for the holiday, and in fact he didn't decide for sure till the twenty-third. Now I began to coax him to make the trip, and Roger encouraged me to buy a tree and have people over on Christmas Eve, as we always did. We would keep the whole thing on a much smaller scale, but I think he figured it as a way for me to proclaim we were still in the game. He himself was eagerly making plans to be back to work right after Christmas, and I told Alfred we could go ahead with the horror script for Warner Brothers. All this AZT optimism was better than a Currier & Ives snowfall.

I knew, of course, that Bruce had been gravely ill during all the weeks Roger was in the hospital. I even managed to check in every few days with Chana, in the hope that I could at least talk to Bruce and let him know we had copped the AZT. I realized only later how carefully his friends were couching what they said to me. I had some indication that there were episodes when his mind wasn't right, but dementia was still largely undefined and unspoken, even in the AIDS underground. I heard that nurses had been brought in around the clock. But none of it struck me as fatal: It had been only a few weeks since I'd seen Bruce myself, and it was Roger, after all, who had just nearly died.

Bruce wasn't even hospitalized, so I kept assuming he must be treading water, the way Roger had before his crisis. Surely one day soon I'd call and he'd actually answer the phone. But it was always Chana who answered, and she would say carefully: "Bruce's case is completely different from Roger's. He's been a lot sicker from the very beginning." She was trying to break it to me easy that he wasn't going to make it, but the subtlety went right by me. They obviously didn't understand how close as a shadow death could be and still you could squeak through and outwit it. In any case, it was only a matter of weeks before we'd force them to expand the AZT protocol. Bruce just had to hold on.

I woke with a start on Sunday morning the fifteenth when the phone rang. I was sleeping in late again because Bernice was covering the morning shift, and this was the day I meant to go get the Christmas tree. But I panicked at the sound of the phone and scrambled out of bed, instinctively feeling I had to get it before Roger did. Then I heard him say hello from the back bedroom, and as I came out into the hall he gave out a low wail of pain: "Oh, no." I stood dumbly in the bedroom doorway as he looked at me in total defeat. "Bruce died last night," he said.

I felt the same spurt of annoyance as when Ted called a month before to tell me Cesar was dead: Why are they bothering Roger? I had no time to mourn Bruce either. At one point I wanted to go over and see his sister Carol, who flew in from New York, especially when I heard she was asking for me. But I was afraid to walk the two blocks and be in the presence of death, afraid I might bring it back with me or see too much of the apparatus of mourning. If there had been a funeral I would have gone, but they decided to put off the memorial till mid-January.

Six months later Chana called to tell me Bruce had left me the huge Francis Bacon lithograph in his will, because it was a picture of a writer. And I thought: He left me that because I got him the drug that killed him. By then Roger was blind, and I wouldn't bring a new picture into the house if he couldn't see it, so the Bacon never arrived till six weeks after Roger died. I still haven't hung it up.

It all came full circle in August '87. The final flourish in Bruce's will was the wish to have his ashes scattered at Fire Island, where he'd played out so much of the glamour of his youth. The
most
beautiful place, as he would have said, with the
most
beautiful boys. I flew east to join the family at the ferry slip in Sayville—his parents, his sister, his friend Jimmy—and we went over on a milky summer morning, the plan being to toss the ashes from the ferry window into the bay. Illegal, of course: ashes belong in the open sea, beyond the three-mile limit. Bruce's cousin passed the box around, and I watched Jimmy cradle it and start to cry. Then he passed it to me. It was heavier than I expected—the box was bronze—and it felt truly as if I were holding the final weight of a man. That's when I cried for Bruce. An hour later on the dunes I cried for Cesar, whose ashes I never held, dispersed I know not where. Then I cried all the way back to L.A. on the plane, for Roger mostly by then, but really for all of us, this generation of widows and groping survivors.

The first attendant we had from APLA was Jack, a bald, enthusiastic fellow who bustled about the house dispensing cheer as his marinara sauce simmered on the stove. It was such an odd time for him to be there, because I was in the middle of Christmas preparations, readying the loft for Craig, and Alfred and I were brawling in the study as we brought a script to completion. The house on Kings Road didn't feel like a hospice at all, and Roger seemed very much part of the bustle, though I could see Jack attune himself to Roger's pace, to the rhythm of his naps—quietly tidying cupboards and reading Theosophy during his breaks. I felt guilty eating anything he made, since he was supposed to be cooking for Roger. Yet Jack didn't seem to mind the upbeat air in the house at all. He'd already been through a couple of grim final stages, and plainly we were a picnic by comparison.

About three days before Christmas, Roger got word from his secretary that she would be leaving in February and moving back to the Midwest. Ricki was the best assistant he ever had, and she'd covered all his bases at the office with superhuman skill for months, never breaching the discretion of the unnamed sickness. Her giving notice was a blow to Roger, who thought of her as his last vital link to Century City, the office he hadn't been in for six weeks. I swore we'd find somebody else as good, but that night when Roger told his brother on the phone, Sheldon said, "Maybe this is a blessing in disguise." He clearly felt it was time to close the office, and I can't remember seeing Roger as depressed as he was after that call.

But that same night he also took a call from a friend in Boston, an obsessive woman who'd fallen in love yet again with the wrong man and whose mind was racing with self-deception. Roger listened with understanding and compassion, and then bluntly confronted her with her acting out of the same old pattern. She still speaks of his extraordinary clarity that night—how he was able to shake free of his own dilemma, determined that nobody else waste any more time. This dynamic would repeat itself over and over through his illness—friends would call with clumsy words of comfort, only to find themselves opening up to Rog and hearing him comfort them.