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
I think of that as the moment when Roger came back, though there were a few days on either side when he was closed up like a flower. "Came back," I say, in echo of the highest honor anyone's ever paid me. It was a few months later, and Roger and I were having a walk late at night, and I was fretting about being not strong enough, when he said in disbelief, "But Paul, you were the one who brought me back."
That was the day he meant, when I talked him out of "brain involvement." But even back in November, during those grave days when he almost died, as we waited for the AZT to come in, Roger had gripped Gottlieb's hand one day and said, "Bring me back. I'm not ready to go yet." So that was always the way we thought of it, going to the brink and coming back. When I recollect the times we made it through the dark, I remember feeling as if I were pulling him in from drowning, out of a whirlpool, then breathing the life back into him. As long as he knew who we were, he was here.
We were much further off than the moon in the weeks we fought for those millimeters of sight in the left eye. It was all a hair-trigger waiting game, as they tried to figure a dose of acyclovir that would let him come off IV but would hold the virus. It seemed like agonizingly delicate guesswork, but the longer it went on, the more ground we regained from the enemy. Meanwhile various bulletins intruded from other fronts in the war, but they were all the old bleak stuff of pneumonia and lymphoma, lesions and dementia. We were in a territory not yet on the map, and the herpes battle seemed yet a new intractable dilemma, another in an unending series of dead ends.
Once more I was on the swing-shift schedule of being in the hospital afternoon and night, with a break from six to eight to feed Puck, check messages and drop by the gym for twenty minutes on the Lifecycle. I played the messages now with a sort of flinching of the will, as if I couldn't bear it that somebody might want something. I remember a message from Joel: "Leo's not going to make it this time, and I'm staying until he goes." He left a number, which never answered, and by the time someone picked up, three days later, Leo's ashes were off to West Virginia, and Joel had gone back to Santa Fe. I kept it from Rog for several weeks, because I didn't want him connecting up Leo's eye problems with his sudden demise.
But I must have made the connection myself, and was processing it unconsciously. I was talking to Craig recently, reporting about a friend who went blind in one eye, with no warning. Craig volleyed back the tale of a mutual friend in New York who'd lost all but peripheral vision in one eye because his doctor rescheduled an appointment, putting David off four days—four days that stole his outer edges. And we realized we have this doomed sense now that when the eyes begin to go the brain isn't far behind, that eye problems are the break in the central nervous system's defenses.
Four friends got together and bought Roger a pyramid-shaped talking clock, an eccentric but useful gift that proved a delight to show off, due to the Japanese accent of the voice of Time. Roger always loved gadgets that masqueraded as toys. On several occasions he followed the demonstration of the clock with a story of squiring Borges around Cambridge, when the old fabulist was visiting Harvard and Roger was in Comp Lit. Borges had a big pocket watch that he read with his fingers, but very discreetly, as if he didn't want to seem rude, like someone who watches the clock. Then Roger would quote the Borges line in which he speaks of the irony of his blindness: "I who always thought of Paradise as a kind of library."
One Saturday afternoon I had to be back at Kings Road at three, because I promised Craig I would deliver his next mule shipment of ribavirin to Paul Popham, who was out from New York for a long weekend. Paul had been diagnosed in the same month as Craig, Bruce and Roger, and now thirteen months later he had a bout of PCP behind him, plus he was buckshot with KS. He arrived with his lover, Richard, a wartime bond for sure. Paul having lost a lover to AIDS in '81, they always knew, as Richard remarked at Paul's memorial service, that the nightmare might consume them at any moment. Paul looked thin but tough that afternoon, and I could faintly detect the skilled makeup on his neck to hide the lesions. Richard was undiagnosed, yet he looked terrified and said almost nothing. I was too shy to engage him about the similar roads we were traveling. A month later Richard was diagnosed with lymphoma.
Paul expressed his angry condolences about Roger's struggle with the herpes, then declared, "I'll fight this as long as I can." But he said it with a shrug that wasn't afraid to be hopeless and overwhelmed. This from a Vietnam War hero who testified at Congressional AIDS hearings in Washington when he could barely climb a flight of stairs, pleading with the government to notice us. I love that fatalist's courage—a courage that has cold reality and a sense of the tragic built in.
The hospitalization for Roger's right eye was three weeks long, and after the first wave of furies—shocked, numb, resigned—we made our bargain for what was left and put the crisis behind us. Herculean denial, perhaps, but there was a genuine air of relief as we went back to the space capsule mode, adapting our real life to the confines of 1024. Besides, Roger was back on AZT, and that never failed to point us forward, a little more battered but single-minded as ever. Meanwhile Bernice was able to channel a lot of her own anxiety by volunteering to be Roger's secretary, and the two of them began an ongoing process of filing and making calls, taking care of a babel of details that had gone unattended in the previous weeks. With Roger busy working in the afternoons, I stooped to pick up the thread of my work with Alfred.
Joe and Stuart from Philadelphia had recently sat down with Roger to do their wills, and now he dictated drafts of both over the phone to a word processor in Century City, who agreed to moonlight for him by the hour. Another client went to the hospital to have some business papers drawn up. Roger was working productively and comfortably now with a co-attorney, Esther Richmond, an old friend and fellow sole practitioner. With extraordinary adaptive skill he had drawn together a system that covered his bases and still met his own exacting standards. In the process he preserved a small corner of the market that was his, and he kept it alive till the end.
Yet I recall how hurt Roger was when he lost his first big client for no other reason than AIDS. He was a surgeon from Orange County, a fresh-minted millionaire surrounded by business managers, pulling in the mid-six-figures. He'd been a client of Roger's since the law firm days. I always used to think of him as Roger's one normal client, who just had money and not a lot of problems but needed a lawyer to handle his byzantine corporateness. Roger never missed a deadline with him, never neglected to return a call throughout his illness. But Dr. Orange was aware that Roger had been hospitalized several times and finally asked what was the matter, was there anything he could do. Roger shrugged and bit the bullet: AIDS, he said, but hastened to add a positive word about AZT. The doctor made all the right clucking noises of sympathy, and three days later a lawyer called and said he wanted all of Orange's files forwarded to him.
When Roger queried the doctor, Orange swore he'd been misunderstood and quickly backpedaled. "Of course I want you to finish what you're doing for me now," he said. "I only wanted to set up a smooth transition." Beware of transition, the euphemism that kills without leaving a mark. Jaimee ruefully told her brother that Orange's new lawyer had obviously hustled to fill the vacuum, but that Roger's work wasn't dependent on one client, so let it go. Yet Roger had a hard time over the whole issue, seeing it not really as AIDS discrimination but as if somehow he'd failed as a lawyer.
By now Rita and Aharon were on their way back to Jerusalem, with a gravely ironic and casual good-bye as they left, and a few days later Al and Bernice headed home to Chicago, saying they would be back the instant we needed them. As we gathered ourselves together to leave the hospital we were eager to get a new prescription for Roger's glasses, so he could have full use of the good eye. Our friend John Orders, on a year's sabbatical from CAL/ARTS, came by one morning and took the prescription downtown so it could be processed the same day. About 8
P.M.
Roger had his new glasses, and smiled with pleasure at how well he could see. In that moment—the satisfied smile as he gazed around the room, taking in the world again—he was whole once more. It may have been for the last time, but he glowed with possibility, ready to leap back into life without a trace of bitterness.
There was a last bedside exam by Kreiger, who said he would monitor the eye every week or ten days to make sure there was no recurrence of infection. Meanwhile Roger would be on a high oral dose of acyclovir. Almost by way of an afterthought, Kreiger mentioned that the only other problem he could foresee was a detached retina, since there had been sufficient damage to the good eye to weaken the connection. But he assured us the probability was remote and we shouldn't worry about it.
Roger came home the next day. We had a temporary nurse's aide from APLA to help with the transition, but were hoping we could make do on our own within a few days. The nurse was a middle-aged black woman who'd buried her husband the previous year from cancer: she quietly read her Bible when she wasn't helping Roger, highlighting the text with a yellow Magic Marker.
I don't even remember any wariness in us about the homecoming, perhaps because Roger had been stabilized in the hospital for several days on oral acyclovir. In addition, the AZT was having its noticeably revitalizing effect on Roger's strength and alertness. John Orders dropped by Friday morning with some groceries—I was still asleep—and he sat and visited with Rog in the pool bedroom. We'd known John since Boston, met him on a sunny spring day on the Esplanade, walking with a friend who's dying of the plague now. On this equally bright spring morning ten years later, John and Roger were happily chatting and making puns when suddenly Roger tilted his head and said, "It's awfully dark in here. Do you think it's dark?"
"No," replied John in an ashen voice, feeling, as he told me later, a terrible sense of dread.
I woke up shortly thereafter, and Roger told me—without a lot of panic, almost puzzled—that his vision seemed to be losing light and detail. I called Dell Steadman and made an emergency appointment, and I remember driving down the freeway, grilling Rog about what he could see. It seemed to be less and less by the minute. He could barely see the cars going by in the adjacent lanes. Twenty minutes later we were in Dell's office, and with all the urgent haste to get there we didn't really stop to reconnoiter till we were sitting in the examining room. I asked the same question—what could he see?—and now Roger was getting more upset the more his vision darkened. I picked up the phone to call Jaimee, and by the time she answered the phone in Chicago he was blind. Total blackness, in just two hours.
He didn't cry out, not then. He was too staggered to howl like Lear, and all I remember is a whimpered "Oh," repeated over and over. Then Dell came in and examined the eye and said as calmly as he could that indeed the retina had detached. As the two of us choked on nothingness, he put in a swift call to Kreiger, and they talked about scheduling an immediate reattachment. Dell had nineteen other patients waiting, and there was nothing else he could do. He said he was sorry and left, looking helpless. We sat there stunned, clinging to each other's hands. I think I tried to pull out of it and focus on the operation, but neither of us could think at all as we tottered forth from the suite, me leading my friend as he groped a hand in front of him. The nurses' faces were tight with pain.
I don't know what we said to each other. I think we just numbly went forward—I had to hold him close and lead him down into the parking garage, then somehow get us home safe through murderous Friday traffic. I made consoling noises, but they made no sense. When we got back to the house I settled him in the bedroom that two hours before he could still see. The nurse tried to make him comfortable, but still that frail and broken "Oh" was all he could say. I called people for him—his parents, mine, I don't remember who—and at last he let the cry tear loose. "I'm blind," he wailed as he clutched the phone, again and again, to everyone we called.
None of the meaningless, unsolicited consolation that people have murmured since then—about the logic of things and desirelessness and higher powers—will ever mute a decibel of that wail of loss. I had to force myself to stand my ground in the house and hear it, and not go mad or dissolve in a tantrum. Everybody he talked to cried with him, but I was too scared to cry. Besides, I had to get us through to Tuesday, for Cope had called right away to tell us the operation was scheduled for Tuesday morning. I listened in on his call to Roger, huddling in the shade of his compassion, trying to learn what it was people said when the worst had happened. He listened to Roger's woe and terror,
really
listened, with an "Oh" that echoed Roger's own. Then he spoke and gave comfort and made us hope. All through the calamity I've heard the noblest people do that: Somehow they find the words.
It was Joe Perloff that Roger turned to the next day. I greeted Joe and Marjorie at the door, and behind me Roger felt his way along the hall and came wide-eyed into the study, as starkly blind as Oedipus, struck down and gaping with the horror of it. He broke down crying as he clasped at Joe, and they sat to talk while I went dazed into the living room to sit with Marjorie. Joe spoke to Roger about the fear of heart patients before surgery, and he said the only wisdom he'd learned from them was how they took the enormity of it one small step at a time. Since Joe was also Kreiger and Cope's colleague, he was the perfect bridge of security that day, anchoring our trust that we had the best on our side.
Not that either of us was capable of feeling much better. I kept the calls coming in from friends and family, and a stream of visitors Saturday and Sunday who couldn't think what to say but who came. Anything to keep Roger from sinking into himself, now that the world had cracked in two. I remember Rog on the phone with my brother on Sunday night, the natural empathy between them because of my brother's handicap: at least Bob was someone to turn to who knew how little anyone understood.