by Paul Monette
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. Roge
r 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.
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.