Borrowed Time: An AIDS Memoir (38 page)

So we had a few weeks free of further calamity, and during that time enough of Roger's vision came back so that he could see his way around. We began driving up to Laurel Canyon Park again to run the dog. I remember the day in Kreiger's office when Rog identified the E at the top of the chart. The next month or so was a constant movement forward as he worked his way down that chart, a new line every week. Or he'd sit in front of the television and peer intently out of his good eye, picking up images. One night he listened to the Mozart
Requiem
on PBS, and the camera stayed in one place long enough so that he saw it as well as heard it.

We had a new attendant from APLA. Dennis was a black man in his early twenties, possessed of great gentleness. He could hardly boil water in the cooking department, but tried so gamely Roger grinned and bore the odd juxtapositions on the plate. Roger also made arrangements with a young man who worked a part-time sales job and wanted to moonlight helping people with AIDS keep their businesses going. With all our systems in place, I took an afternoon off and went to see Dr. Scolaro, jettisoning at last the Ferrari doctor. Scolaro was an activist who believed the virus was conquerable at an early stage, and he was thus aggressively studying all the combinations of antivirals. I found out my T-4 helper cells had shrunk from 590 the previous summer to 430. No drug of any sort had yet been found to increase the T cells. Once the virus consumed them they were gone. Scolaro prescribed acyclovir, the herpes drug, on the theory that it lowered viral activity in the body and perhaps muted some of the cofactors of the AIDS breakthrough. He said I should be having the numbers tracked every three months now, and if the T-4 number showed a bad trend downward I should probably go on ribavirin.

I know it was only three weeks of repose before the next crisis, but in memory the days of late spring are longer, perhaps because time was so precious, especially with sight returning. We were very laid-back ourselves, as I would read Roger the papers in the late afternoons or, at night, from
National Geographic.
One long piece I read aloud recreated Ulysses' voyage home from Troy to Ithaca. I gave elaborate descriptions of all the maps, to locate the whole itinerary on the ground of Roger's imagining. He couldn't read yet; reading still seemed far away. But it didn't feel in the least as if we were waiting for death or the next disaster. And we were so close now I couldn't think at all anymore without thinking first about Rog. In sum, we were doing the best we could with what we had left, and more and more it was like Diogenes tossing away the tin cup because he could drink with his hands. It turns out there is no end to learning what you can do without.

People around us were full of a certain fatalism now. Not that they'd put it in so many words (if they did, I'd fire an immediate warning shot). Cousin Merle called from Oakland to say she'd like to come down and see us soon, "because we don't know how long it's going to be." I told her sternly we didn't talk that way, and no one was planning to die around here. Or one afternoon I was walking with Rand in the hospital, and he said how painful it was to have a friend "in the late stages of AIDS." That wasn't how we thought of it at all, I retorted coolly. "There
is
no early or late," I said. "There's only how much you fight it."

As I write this it sounds, even to me, as if I was living a total illusion. And I wonder if Roger felt it as strongly as I, that to talk about death at all was to leave a door unlatched. Jaimee and I were so bullheaded certain we'd beat it. I think she and I set the tone from here on, the held breath as we passed the graveyard. Though Roger would sometimes get snappish at us—"I don't need any more pep talks"—I never had the sense that he was any more eager than Jaimee or I to talk about the end. Perhaps he held it all in for us, deeper than he wanted to. A chill of guilt still shivers through both of us sometimes that we didn't let him speak. "What were you supposed to say about death?" Sam asks me now. "That it sucks? Don't worry, you all knew that."

The unspoken fear and sorrow in our friends were every bit as troubling as any remark that overstepped. Around May 15, Susan and Robbert left for their two months in Europe. They promised to send a blizzard of cards, and did, but we bid them a hollow
bon voyage
, as if we knew what a feat it would be to survive till they returned. Conversely, everyone close to us could see how extraordinarily Roger had survived the latest indignity, and every time another crisis had been navigated the hope would ripple outward. At least for the first month after the operation we left no stone unturned, as we fought to maximize what sight was left.

So there was probably something of a mood swing among our loved ones—resigned one minute, inspired the next. Sometimes the end must have looked to be inevitable and soon, and other times, when we defied the odds, our team was as exhilarated as we were. Al and Bernice had asked Cope in April how long it would be, and he shrugged and said, "Three months, six months..." None of them ever told us that, and when I finally heard it I could only think defiantly that we'd made it the full six. Yet it was just as well nobody tried out the odds on us. For a while there, we were too busy winning to lose.

Kreiger put us onto the Center for the Partially Sighted in Santa Monica, and we went for the first appointment early one morning at the end of May, shy and a little uncomfortable at having joined the disabled. Happily, the Center turned out to be a haven, and from the very first interview, with a painter named Joey, who was openly on the bus, we realized we were in the presence of even more pluck than we could muster on a good day. The operating principle was, if you had the smallest crack or shadow of vision they'd find you ways to see with it.

Joey turned us over to Dr. McAllister, an ophthalmologist, who was able to fit Roger with eyeglasses that took the blur from his field of vision. Now he could see things for real again, not well enough to walk in a crowd, not strong enough to read, but he saw my face and the temple lights and the first gardenias. A week later McAllister showed us a closed-circuit television that could magnify a text so the letters were an inch high on the screen, white on black. He lent Roger a lighted magnifying glass, better than the one we'd bought at Koontz Hardware, so Roger could scan a menu or the headlines. Also a pair of wraparound shades to cut the glare. "Do I look like
Miami Vice?"
Roger asked me, deadpan. All of these advanced his vision, and equally our morale.

The only difficult time I remember at the Center was the day we had to learn to walk blind. A soft-spoken Hispanic woman was our teacher, and she showed us the best techniques for a sighted person to lead around a blind person. Roger would grip my elbow, and we learned how to turn and negotiate narrow spaces and sit down. It was all presented in terms of the most rigorous practicality, completely unsentimental, grounded in retrieving some measure of the range of motion that sightlessness had stolen. Still, we were being taught to go into the world with a handicap, which is always a brutal transition.

Intolerance, of course, is common law in America. You start to realize that generations of the physically challenged were kept at home and turned into invalids, thus compounding their loss of the world, because they were thought to be aesthetically problematic. For this pitched battle I know I was helped by the early experience of my brother's disability. However difficult the memory trace of wheeling Bob in public, however white hot my rage when people would stare at Roger, I'd somehow known all my life that the disabled have to claim their right to life hand over hand.

After Roger died, his father admitted to me that once his son went blind, even with the reclaimed vision, Al figured the battle was over. He couldn't stand to see Roger hobbled like that and came just short of feeling his son was better off dead. I disagreed mightily when he said so and cited my brother's life of courage, then cited Roger himself. Because I know how unflinchingly he rose to the challenge, all through the summer. In his place I would have been long gone.

So it wasn't an accident that we began going out again to restaurants in the evening. Patched together with AZT and a cone of tunnel vision, instructed how to steer through public places, we knew it was now or never. We'd only go to places that were familiar—Chinese, burgers, Sunday pancakes at Pennyfeathers—but that was exactly what we longed to get back, the quotidian occasions of the neighborhood. Whenever we'd visited Madeleine in Paris she always took us the first night to her favorite
restaurant du quartier
, which no outsider could possibly know about. It's a stretch, I know, to see Hamburger Hamlet on the Strip in quite that way, but it's how it felt to us after eight months exile. And once we had broken the drought with tentative forays of our own, we began going out with friends again.

There were symptoms to deal with too, of course, despite the fort of normalcy we built against the blindness. Roger began to have fevers and sweats, one of the nonspecific gray areas of the disease that can be quite debilitating all on their own, frightening because they could be the beginning of some demonic infection or nothing at all. In the beginning Roger was more assaulted by fevers than by sweats. The zigzag graph of high temps and drenching sweats would start in earnest soon enough. Tylenol was sufficient for the time being to bring the fever down, but often Roger would wilt with a temperature after lunch and have to spend the afternoon in bed. That was the worst aspect of it, that it laid him low and stole so much time.

One poignant day I remember, Roger had made an appointment to see an acquaintance about drawing up a will. Alexander was prominent in the L.A. art world, very cultivated and silver-tongued, and we weren't certain that he knew about Roger's situation. So Roger was a bit nervous that he'd neglected to mention his limited vision to Alex, or that he'd be taking notes with a tape recorder. It may even have been that phase of the AZT cycle where Alex would have had to wear a blue mask. I assured Roger the meeting would go fine, that I would be there to show Alex in and help explain the ground rules.

Roger actually put on a shirt and tie, and after lunch sat in his leather chair in the living room to await Alex's arrival at
2 P.M
. And he waited and waited, till three or three-thirty at least, before he conceded that Alex wasn't coming at all. I think I was more furious than Rog, who shrugged it off and took a nap. It turned out Alex had called the office in Century City and left word that he had to cancel. The lawyers in the suite still allowed Roger to use the main number and took messages for him, so as to give him the professional edge of a number that ended in three zeros. But this time someone at the switchboard had slipped up.

The reason Alex had to cancel was that his friend Tom was dying in a hospital in Santa Monica, with what was first stonewalled as food poisoning. Later, I believe, it was leaked that Tom had been in India recently and must've picked up something awful—perhaps the same exotic jungle horror Cesar had once put faith in. Tom died about three weeks later. So I had to let my anger at Alex go, but I still can't stop seeing Roger sitting there dressed up and waiting, feverish and nodding off but determined to carry through.

Al and Bernice were out again for a week at the beginning of June, and thereafter they came about one week a month. The fevers had so far been manageable, but there came a day when we couldn't bring it down from 103. Roger was feeling miserable. It happened that Dennis, the attendant, was off for a couple of days, and his replacement was one Scott Brewer, a registered nurse from Florida working at APLA as an aide because he hadn't got his nursing credentials yet in California. Scott was very skilled at making Roger comfortable with the fever, but he also thought we should bring Roger in to be sure it wasn't anything serious. "In" was all one needed to say anymore to evoke the world of the tenth floor. Scott managed to calm us down by saying he was fairly sure the problem was dehydration, since it was difficult to keep replacing the fluids lost to the fever/sweat cycle. When Cope concurred that we should come on in to the emergency room, Scott went with us.

As we waited in a cubicle room for Cope, Roger asleep on the gurney, Scott told me his own lover had died a year before in Florida, barely in his early twenties. The diagnosis of PCP took over a week to pin down, so the drug that would've stopped it was given too late. Within days Scott lost his nursing job and was thrown out of his apartment. He came to California to depressurize with a friend, who two months later was down with AIDS himself; Scott stayed on to take care of him. Now he'd volunteered at APLA to work for a fraction of a proper nurse's wage because he believed he was necessary. He was.

Roger was admitted right away and given the whole battery of medieval tortures, from bone marrow to spinal tap. Then we began the long grim wait for results, which trickled in over the next couple of days. In fact Roger turned out to be seriously dehydrated and was put on an IV drip. But the symptoms of that dehydration—weariness and endless sleep, so little responsiveness the second day that I couldn't tell if he was disoriented or not—kept us all anxious and terrified. From me it demanded the same urgent coaxing and engagement I'd used during the days of the brain involvement.