Borrowed Time: An AIDS Memoir (35 page)

In between, we had a busy week working at home, and Roger was a good deal stronger. We decided everything would be fine as long as we avoided sandstorms. Midweek I was down with a two-day spell of diarrhea, and again I sealed myself off in the front bedroom, wearing a mask whenever I left it. I didn't bother with stool samples and the attendant lab terror, though the current bout was as propulsive as the previous September's. This time I refused to knuckle under with hysteria and grimly waited it out. Yet I wonder if, as I focused on myself for those two days, Roger was experiencing any symptoms we didn't track down.

One night I went out late for groceries, since my schedule was firmly rooted now to a 3
A.M.
bedtime. In L.A. you can do all manner of things in the middle of the night, if you don't mind the vampire pallor of your fellow insomniac shoppers. I came home and went in to Rog, who woke up and said, groggy and melancholy, "I just had a dream about Paris. Oh, I wish I could see Madeleine again." We hugged in the dark and talked about Paris, and what it would mean to plan for another trip, if only the AZT would give us a wide enough window. "We'll get there," I promised. "You'll see."

Since Christmas we had been making do without an attendant from APLA, and we were proud of our independence. One of the pleasures of normalcy was that Beatriz was coming on Tuesdays again. She'd been cleaning house for us as long as we'd lived on Kings Road, and we'd watched her progress from a shy girl with fifty words of English to a savvy and vivid woman, comfortably bilingual, with property of her own in Mexico. Because I worked at home and was thankful for the diversion, Beatriz and I would always gossip on Tuesday afternoon. She was very close to her brother Lorenzo, who'd arrived in the States from Guadalajara before the rest of the family and helped all the rest get oriented as they came across the border.

Lorenzo had been sick on and off for several months, including an extended stay in the hospital before Christmas, for diarrhea and general malaise. Beatriz and I had never used the "A" word about him, any more than we had about Roger in the year that had passed since the verdict. But though Lorenzo's diagnosis was longer in coming, due to the nonspecific nature of the pre-AIDS symptoms, Beatriz and I would talk whenever she came about the state of research and the elixir Roger was on. The medical terminology was difficult for her, of course, but she listened with absolute concentration, sounding out the Latinate names. We spurred each other on with optimism and spoke often about how changed we felt about the acquisition of objects. Whenever I see people's collections set out on étagères, with the price tags barely removed, I think of Beatriz dusting and shaking her head.

Friday before the second desert trip, Roger's friend Tony Smith from Boston flew down for an overnight from San Francisco, where he was on the last leg of a trip around the world. I could hear the cold in his head when he called from San Francisco and asked him not to come. But Roger wanted to see him so badly, and Tony swore he'd be assiduous about wearing a mask, so I relented. The two of them had a marvelous afternoon together, and dinner was served in a way that was second nature now that the white count had become a red flag. Though I would eat with Rog at the dining room table when we were alone, if we had guests I'd eat with them around the coffee table in the living room, while Roger ate in state in the dining room, ten feet away. I was especially vigilant about this arrangement because of Tony's cold, but I never stopped worrying that he'd lift his mask and blow his nose. And when the chaos fell full force the following week, part of me never stopped blaming Tony, as if the germs he'd carried from India or Micronesia were to blame.

The second weekend in the desert wasn't noticeably better than the first, especially for Roger. With Jaimee's family there the cast had doubled, and Roger made a real effort to be up and about—hunched over a bit and woozy, but brightening in the charged air of the children's wall-to-wall intensity. Those two nights we stayed at Rita and Aharon's place, and I stayed up late talking with them, because they were night owls like me. I also recall taking separate walks with Jaimee and Michael, where I stressed over and over how well Roger was compared to November and December. I felt as if I had to keep up everyone's spirits, and was convinced Roger had put out too much energy for Tony, and that's why he was so tired. Then, after I'd reassured them all, I'd go into the bedroom and sit on the twin bed and watch Roger sleep, trying to calm myself with his peacefulness as he lay curled in a spoon, a half-smile on his face.

After two ten-hour nights of sleeping in, Roger appeared to have proved me right, for he was much perkier Monday morning as we all sat at breakfast. Actually, as I remember now, Roger got up even later than I and was having breakfast himself, while the rest of us hovered and watched him eat. As he finished his cereal, he said almost offhandedly, "My eye feels funny." Immediately I was alert, but I casually asked him to elaborate, not wanting to alarm the family. "It's like there's a shadow in it," he said, blinking as he passed his hand back and forth in front of the right eye.

Though he shrugged it off, I said we'd call Kreiger when we got back to L.A., and the worry dissipated in the round-robin of family cheer as we made ready to leave. Michael, a rabid Cubs fan, gave Roger an umpire's cap from the National League for luck. Then all the way back to the city, I kept thinking of Leo on intravenous eye medication "for the rest of my life." A new drug that had come on line in recent months to battle cytomegalovirus was one of the few bright spots in treatment. Previously CMV had rendered a lot of AIDS patients blind in the early years of the calamity. Then I started obsessing about the cotton-wool patches that had floated benignly in Roger's retinal sky for a whole year now. Had one of those clouds begun to darken?

Beside me, Roger kept squinting, and I asked if it hurt or was getting worse. No, he said, but the squinting didn't stop. When we pulled into an off-ramp Denny's for a bite of lunch, I called Kreiger's office at UCLA in a panic, but he was away for the day and his service was picking up. As soon as we got back to the city we had to retrieve the dog at the kennel, and he was hysterical. So we had our hands full unpacking and settling in again, and Roger needed to rest from the trip, especially since his fever went up that night. We put off the eye till the next day.

I don't recall if Roger's vision was worse on Tuesday, but the fever was persistent, and now I was certain he'd picked up some kind of flu from Tony. Cope said that was entirely possible and told us to monitor the fever and check in by phone the next day. He knew how reluctant we were to come in for no reason at all, especially after the recent false alarm. As for the eye, since Kreiger would be out of town till Thursday, we made an SOS call to our ophthalmologist friend, Dell Steadman. He met us during his lunch hour at his office in Beverly Hills. As he gazed into Roger's eye with his scope, I held my breath the way I used to do as a child whenever we drove by a cemetery.

No, said Dell, there was no CMV in evidence. The cotton-wool patches were stable. And since he could see no other problems, he suggested the optic nerve might be temporarily damaged by a flu or cold virus. Roger's vision in that eye had dimmed some more, but not dramatically. We went home relieved and tried to forget it, tried to go back to waiting for AZT, but the fever wouldn't go away, so the next day Cope suggested we'd better come in.

The rest of the week is a blur of apprehension and horror. Kreiger and two other eye doctors examined Roger over and over, and though the business about the optic nerve made sense at first—by now Roger was
seeing
mostly shadows out of that eye—the retina began to show subtle signs of damage. Suddenly Kreiger wasn't satisfied. I could see he was puzzled and thoughtful, even as he concurred for a while that the vision would surely return—or perhaps he just neglected to contradict our own tense optimism. I don't know when he decided to put Roger on a high dose of acyclovir, the herpes drug. By then I was on the phone nonstop, trying to field all the info I could find about AIDS and the eyes. The problem was, there was no way to be sure it was a herpes infection, because you can't do a biopsy of the eye, except by autopsy. Yet Kreiger decided to treat it as if it were herpes, though he'd only know that he guessed right if the forward creep of infection stopped.

I don't know myself what I was trying to find out with all my phoning—any anecdote would do, it seemed, as I pieced together a nightmare collage. I remember talking to a man who didn't know who I was, whose number was given to me by one of the Tijuana mules. He had gone blind only a few weeks before and was still choked with sorrow about it, yet he bravely told me his whole story—the misdiagnosis, the prolonging of treatment till it was too late, the breaking of the news, the blackness.

I told him I was sorry and then about my friend. Yes, he said, he understood; his own friend had died just after Christmas. Among us warriors there is a duty to compose ourselves and pass on anything that might help, no matter how deep the grief. Two weeks after Roger died, a frantic acquaintance called to ask about the meningitis drug that hadn't worked for Roger, who died with it in his veins. Just the mention of the word took my breath away, as I answered questions about the convulsive side effects. But I thought of the blind man trying to help me save Roger's eyes, and so I stayed on the meningitis case till the crisis was past.

By week's end the vision was effectively gone in the right eye, though Roger could still distinguish light from dark and make out the shape of my hand as I passed it back and forth like a metronome.

Roger's parents had come up from Palm Springs, and they sat with him while I made calls from the corridor phone. We managed not to panic because the fevers had passed and Roger was feeling fine, and no one had yet told us the loss was irreversible. All my scattered research among the blind kept coming back to CMV, which wasn't our problem. No one seemed to know very much about herpes in the eye, but at least it was treatable, everyone said.

So I don't know which came first—hearing the infection had spread to the good eye, or hearing there would be no return of what had gone. It took a day or two for the acyclovir to kick in. The infection finally stopped moving, and at last Kreiger was satisfied he was dealing with herpes. Now he suspected that several other cases of blindness he had heard about lately were herpes-related. Yet they were being diagnosed CMV, and the vision evaporated for want of the right prescription. The blackness was, in fact, preventable. In a matter of days the infection had managed to destroy the retina of Roger's right eye, burned like chaparral in a canyon fire. I thought of the blind eye in just that way—as scorched earth, the retina itself spent and insubstantial as a flake of ash.

We must have all been in shock, but if there was ever a time we had to see the cup as half full, it was now. We poured all our emotions into relief that Kreiger had been so smart and so tenacious, because if he had let it go so much as another day or two, Roger would have been totally blind. Jaimee remembers Roger saying a week later, when she and Michael were visiting on Easter Sunday, "I'm willing to give them one of my eyes, as long as I can keep the other one." So by then Roger had bought into looking on the bright side, a process his parents and I were eagerly, almost frenetically, engaged in. His vision had shrunk by that point to a cone without much peripheral reach, but Kreiger and Cope assured him the eye would adjust and compensate, and there was no reason he wouldn't be able to drive a car again.

But before that affirmation took hold in him there was an implosion of despair, where he nearly slipped away. He seemed to be processing it all reasonably well, communicating with us, connecting still to work, reassuring
us.
There was no way to gauge how much he was simply trying to make us feel better, for that was his instinct always, conscious or not. All I know is that Dr. Martin the psychiatrist went up to the hospital for a session with him, and when he got back to his office he called me and said, "Roger was very confused today. You do realize there's brain involvement."

I don't recall there being an instant's time between hearing that phrase and driving the car at fifty-five down Sunset to the hospital. When I got there Roger was asleep, but I coaxed him awake. I wasn't sure how lucid he'd be, and scared of the distance, but I was determined to find a way in and find him a way out. He was all there, I could tell right away, but very sleepy, almost drugged. I felt this urgency to keep him talking, the way you would try to keep a man conscious who'd taken an overdose of sleeping pills. Yet for once my urgency was unaccompanied by hysteria. Over the next several hours I was absolutely clearheaded as I kept him engaged and lobbed him questions, never overtaxing him and always keeping calm because I sensed he was being dragged under by his own anxiety. I wanted to make the real world, here with me, the easy one. I understood intuitively that the great tiredness was a kind of shutting down. I knew we must stay in absolute sync, for the enemy had grown so subtle, its camouflage so chameleon, we had to be on constant watch.

That night when Cope came in, I remember, Roger was quite without affect, picking at his food and peering suspiciously with his one eye. Cope couldn't seem to get anything from him but monosyllables. Roger was still having pain from the shingles, and he'd clutch his side when he sat up, as if stabbed by an old wound. We'd both heard enough good cheer about how thrilling it was to be left with two thirds of an eye. But Cope stayed and persisted, talking to me instead, at one point asking me how I was sleeping. Okay, I said, having chipped my way down to half a Halcion and a quarter of a Xanax. I was compulsive about keeping my milligrams low. And suddenly Roger cracked up, laughing at the thought of me quartering the little white pills, he who had borne witness to a thousand of my small compulsions of hygiene and general nest behavior. Cope seized on Roger's laugh, and in a moment we were all chatting again, the three of us against the calamity.