Borrowed Time: An AIDS Memoir (43 page)

8/25
Monday

V. difficult weekend, esp yesterday—we did not move from the house except a little walk up Harold Way. I lay on my bed at 4 PM & thought I'm just waiting to get sick.

I kept telling Sam late at night that I wasn't exactly depressed, I was frantic, and I liked that better, I could neither hold to nor project a future anymore, and the consequent dread and rage had left me wildly manic. Sometimes I could feel my heart pounding as I counted out the day's pills from eight different vials, or ventriloquized a smile in order to talk business, Sam thought it was partly to do with the news I'd had about my active viral status. If I dared to slow down or think too much I'd end up looking blankly at the ceiling as I did on the twenty-fifth, staring into the coming storm.

Yet I don't recall that Roger and I were arguing or using each other as punching bags. We were much more drawn to comforting now, and curling like spoons to rest, talking softly of nothing much. If I suddenly panicked and told my fear of the calamity falling on me—the old horror of the two of us in separate hospital rooms, dying the same death—Roger would quickly force me to take a cold-eyed look at the reality: "You're fine." As if he would not countenance any moaning about an abstraction less savage than blindness. I am the same way now myself, ready to jump out of my skin if someone gets testy or whiny about anything less apocalyptic than AIDS.

Sheldon had been pushing for some time about selling the apartment house on Detroit, and now he grew insistent. I couldn't believe he was engineering yet another way of cutting himself off from us, and he seemed to have no feeling at all for how thrown we were by matters that smacked of final payments. His argument was that Roger and I could no longer keep up our end of the maintenance, and he simply wasn't of a mind to pick up the slack. I could see what a blow it was to Rog to lose the property he'd invested so much pride in. It all just seemed unnecessary, since Sheldon had a whole organization to manage his properties, but he apparently saw it merely as a business proposition that was going down the drain.

Roger didn't try to evade his nagging, but struggled to ask the right questions about the market, whether it was a good time to sell. After all that work he didn't want the investment to be a bust. He'd laid out five thousand once on a stock tip that went in the toilet, and he always worried afterwards that he might be dumb with money. I never indulged this brand of fretting. "Don't worry, darling," I used to tell him. "I'm a terrific investment."

Roger decided himself that we ought to get rid of the Datsun, since we didn't need two cars anymore and insurance in Hollywood was hopeless. I didn't really care, though I felt a certain sentiment for the gray 280Z, which we'd bought the month we arrived in California and which Roger had kept in mint condition. But a friend who worked at Sheldon's bank offered to try to sell k for Roger, so one afternoon I delivered it to her. I spent twenty minutes rooting under the seats and in the glove compartment, turning up ticket stubs and Stim-u-dents and quirky notes in Roger's hand, till I was overtaken with sobs. I had an irrational fear that if we gave up things like this, got rid of too much that bore his imprint, Roger would surely die. I was therefore limp with relief a few weeks later when Jennifer had to admit she'd had no offers, and we took the Datsun back. We stored it in the garage and cut its insurance to the bone. Six months later, when I finally got rid of the accursed Jaguar, I put the Datsun on the road with the strangest sense of joy, as if Roger were suddenly near again.

I scored my first batch of ribavirin that week from Jim Corty, an extraordinary hulk of a man whose passion for fighting fire with fire was as obsessive as mine. Jim was a nurse who cared exclusively for people with AIDS, and he personally drove a van over the border into Mexico every couple of weeks to haul back great quantities of ribavirin, supplying dozens on both coasts. His own lover, John, had been diagnosed in the spring, and Jim was constantly monitoring Roger's experience with AZT, eager to get it for John once the protocols were expanded. Jim always made me feel we would beat it, and never failed to rekindle my excitement about AZT. Ribavirin of course was a much less certain drug, but I went on it anyway, because there was no other game in town for me. I had been too vocal for too long that people ought to be getting tested so they could demand medication early, and it was time for me to put up or shut up.

I know I was growing increasingly desperate about Roger's cough, and if he suddenly had a jag I'd find myself getting irrationally angry, though I could usually swallow it. But I would have sworn there were no other ominous symptoms, no shortness of breath or overwhelming fatigue. This is not to say he didn't sleep a good deal, but between Scott and me we were very skilled at getting him up and going so he didn't sleep the day away. When he was up he was animated and alert, especially when anyone visited. The summer days were so lambent now, even as the summer waned—mornings in the garden while I read him the paper, evenings reading Plato, the smell of anise when we walked at night. These brief, immediate goals of the day-to-day we had come to cherish, no matter how constricted our movements.

It was Friday of Labor Day weekend when Scott asked me as he was leaving the house, "What does the doctor say the prognosis is?" I suppose I knew he was asking about the timetable of death, but that didn't seem to me the appropriate question at all. "The doctor says he's doing fine on the AZT," I replied, a bit defensively. Not that Cope had really said as much lately, but it was implicit in Roger's survival for nearly ten months now since he started the drug. He was the miracle man, period. He had to be, because thousands of our brothers were about to follow him on AZT.

A series had begun to run in the L.A.
Times,
a portrait by Marlene Cimons of an AIDS person in Boston. Jeff, his name was, and he'd been chosen to be in the AZT double-blind study being funded by NIH. It wasn't hard to get reanimated over AZT as news of its efficacy began to break in waves at last. We were thrilled by the
Times
story and very moved by the passion of the man's doctor, who reminded us in his patience and dogged persistence of Dennis Cope. So I tried not to overreact to the first bad news about AZT, which was Roy Cohn.

The press had uncovered the fact that Cohn was being treated at NIH in Washington, and the rumor was that it was AIDS, despite Cohn's drone of denial for the last two years. We had known through the grapevine for nearly a year that he was among the first AIDS people to go on AZT, after Nancy Reagan intervened in his behalf. The press was stumbling all over itself getting the story wrong about Cohn's demise, but I had a nearly day-by-day update from Craig, whose friend Donald was getting AZT intravenously on the same floor in Bethesda. "He's going to die in the next couple of days," said Craig, and I tried to keep the thought from racing in my mind: But no one's supposed to die on AZT.

CBS did a big report one evening that week about crack cocaine, the report we kept feeling they ought to be doing weekly about AIDS. Don't you understand? friends in New York would say, hoarse from screaming at the press for coverage. Cocaine wasn't a problem till it started turning up among the children of media dons and the Washington power elite. This at a time when I would hear at least every other week about the discreet death by AIDS of one or another rich man, the cause of death fudged on the certificate or otherwise unreported. Every gay man I know has stories of married bisexual men who died in the secret enclaves of family, town, church, and local GP, all without saying the "A" word. Even certain gay doctors, we heard, would blur a death certificate if the family was mortified enough.

Saturday before Labor Day we took the dog up to Laurel Canyon, and Rog was feeling well enough to walk all the way around the perimeter of the six acres, where it falls off steeply into bone-dry chaparral. Puck nosed among the trailside bushes, where the fleas are epidemic in the fall. Roger and I were arm in arm and slightly huddled, as we always were these days, but no one stared at us, wrapped up as they were in volleyball and holiday picnics. We'd reached the far edge of the park when a man with a pair of German shepherds came sauntering by, barking commands to his dogs. Puck preferred people to other canines and thus kept his distance, but on some mangy whim the two shepherds suddenly turned on Puck and grabbed him. I had to leave Roger to go hollering into their midst, and it almost came to a fistfight between me and the shepherds' Prussian master. Roger stayed calm, but I saw him straining to listen and separate the snarling of dogs and owners.

I couldn't let it escalate any further without causing Roger problems, so we left the field. I broke down crying in the car, overwhelmed by anything harsh or disruptive. Roger was very good about me crying now, where he used to get impatient and tell me to pull it together. He would let me weep it out, soothing me but offering no contradiction of the tragic. "My poor little friend," he'd say tenderly. "So many things to worry about. Come on, let's go home and have a spoon."

Sunday the thirty-first was our twelfth anniversary, and I decided to invite a few friends for dinner to celebrate. It turned out to be a bad idea, because I was beyond manic all day long as I did my IV chores and tended to Rog and tried to cobble together a proper cold supper. I would forget about people not knowing the rhythms of dealing with Roger's blindness, especially that it was easier for him to have one-on-one conversation. At the table the guests talked too much and didn't address themselves to Rog, so he ended up feeling ignored and lost. Meanwhile I was angry as I dished out the dinner. I couldn't wait for them to leave, and when they did I walked them downstairs, where they wished me a dubious happy anniversary, as if to say how could I be happy? "I'm just glad we're still here," I said evenly. "That's all I care about anymore."

Still we were going to UCLA three and four times a week, to have blood drawn and to see Kreiger. They were fairly dispiriting visits, and sometimes Roger would be so tired or feverish that we'd use a wheelchair to go from the parking lot to the clinics. Every appointment with Kreiger was sadder now, as Roger saw less and less of the chart, especially when he had fever. Kreiger avoided sounding falsely optimistic, but he swore they could do a quick laser surgery on the cataract, once it had ripened enough. Then Roger would have back the limited vision he had achieved in the summer. At least it was something to hold on to.

Wednesday, September 3, I had my first appointment with Dr. Wolfe, who'd left UCLA and was in private practice in Century City. I wanted his measured and cautious approach to treatment as a balance against the aggressive approach of Dr. Scolaro. Wolfe for instance didn't think much of ribavirin, I could tell. The visit was smooth till I was driving out of the parking lot and suddenly faced the twin office towers where Roger had had his digs, and I burst into tears at the sight of what he'd lost. I wouldn't go to Century City for months thereafter.

I came home to find the dog had a running open wound on his leg, and we realized he'd taken a tooth tear from one of the German shepherds. So I made an appointment with the vet for Friday morning, which is why I didn't take Roger over to UCLA for his blood transfusion. Cope called Thursday and asked him to come in next day to receive two units. We got a driver from APLA to take Rog over in the morning, and the plan was that I would pick him up at two. Then I sat with fifteen dogs in a waiting room for an hour and a half, waiting to leave Puck off.

Arriving at UCLA, I expected Rog to be feeling spunky, since previous transfusions had always energized him so much. I knew Cope had spoken of checking out his cough and perhaps giving him a blood-gas test, but when I'd talked to Roger on the phone at noon he said the meeting with Cope had gone fine. I walked in at one-thirty and saw Roger sitting on the edge of the bed, all fresh-blooded, and I greeted him heartily. And hearing my voice, he looked over full of pain, and said in a tragic voice, "They're carving my tombstone."

One of Cope's colleagues had just been in to tell him his blood-gas number was in the sixties, which had always indicated PCP in Roger's case. They could only be sure with a bronchoscopy, but Roger categorically refused. He would not go through that test again, recalling the night when his throat had frozen and he begged us word by slow word, "Why is this happening to me?" If they felt so certain he'd broken through again, then they should just go ahead with treatment. I fell instantly into the support mode, promising him he wasn't dying: We
knew
this infection, we'd pulled him through three other bouts of it. I truly believed it as I said it, and didn't start obsessing about Roy Cohn and the breach of the AZT wall till later that night. They were admitting Roger right away, and I felt this helpless yearning to take him home.

Some of the agonies that burn in the heart forever begin as brief as snapshots. A nurse came to wheel Rog through the dozen corridors and bridges that connected the Bowyer Clinic to 10 East, and at one point we were on an elevator. Roger looked over and tried to see me five feet away, straining his one eye as if he were reaching for me, as if from a train pulling out of a station. That was the first time I ever suffered dying, and I can't even say what death it was. Roger's and mine both, to be sure, but something more as well. I understood then that the tragedy of parting was deeper than death—which only the very wisest have anything true to say about, like Mrs. Knecht across the street. "Here I am, Rog," I declared softly. He knew then that it couldn't be very far off, and I must've known as well but couldn't face it.

Yet that three-week hospitalization, the final extended stay, wasn't really so horrible. I was right when I said we knew this infection cold, and we stayed on top of it throughout, conquering four for four. In addition, we were blessed with a marvelous intern, Dr. Beal, who got who we were as soon as she met us. Her empathy and humaneness only threw into bold relief the gawky discomfort of the male interns we'd dealt with. Perhaps it was because Dr. Beal had gone to med school later than the rest and was ten years older than the kid doctors. She enjoyed us thoroughly, even after the incident. On the day following Roger's admission she was drawing blood, properly gloved of course, and she and I were chatting as she injected the blood into various culture mediums. Suddenly I saw her drop the needle; when she reached for it, it jabbed deep into her wrist. She stayed cool and went down for a gamma globulin shot, while I tortured myself with guilt that I was responsible, talking while she was working. She dismissed these thoughts firmly and did not go off the case and utterly minimized her own fears, though I could tell Cope was worried for her.