by Paul Monette
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.
I don’t think we even ventured out of the house all weekend, except to sit in the yard. Dr. Martin was extremely helpful, focusing us on the sensory deprivation, giving Roger clues to bring the world back—music on, think of the plate as a clock, organize the bedside table, sit outside, keep talking. Monday Roger’s parents arrived from Chicago, scarcely having unpacked from the trip home. I took Rog over to UCLA and checked him into Jules Stein Eye Institute, a whole separate building at the medical center, sheathed in rosy travertine, lavishly appointed throughout.
Roger and I had grown accustomed to the tenth floor and its staff, so much so that we thought of it as an annex of our lives. The third-floor inpatient facility at Jules Stein was entirely different. They had only the one floor of rooms, and most were empty. Either the patients they dealt with were in and out, or they were pricing themselves out of the market. It was clear to me from the nurse’s intake interview that they’d never handled an AIDS patient before. When she started to say the wrong thing about isolation and then wouldn’t agree to wear a mask to protect Rog, I began to get sharp, till Roger begged me to stop. I came within a hairsbreadth of being kicked out on my ass.
Kreiger came in and explained the operation, and we found out the FDA was screwing up all over the board, not just in the AIDS department. They’d refused to approve a form of silicone used successfully for a generation in Europe to reattach the retina. In order to obtain some for Roger, they had to spring it from an animal study in northern California, since the silicone was allowed in veterinary medicine. We didn’t know till afterwards that the operation had never before been successfully performed on an AIDS patient. Kreiger was cautiously optimistic about the chances of regaining full sight. Roger had been his patient long enough that Roger trusted him, and Kreiger’s air of self-possession was incalculably calming.
Later Cope made his rounds to wish Roger luck, and broke the news that he’d be out of town at a conference for the next few days. “When I come back, Roger,” he said, “you’ll see me.”
Jules Stein was a pretty forlorn place the night before the operation, with only three or four patients. Roger’s parents and I stayed close around him, conversing and somehow keeping one another from spinning out. I stayed very late, went home and didn’t sleep, and was back early in the morning, just after they’d shaved his eyelashes. I’d brought up a pile of mail, and as we waited for them to take him down to surgery we paid some pointless bills. Two orderlies arrived at ten-thirty and bundled him onto a gurney; his parents and I walked beside it as we headed for the elevator. Strange, how in all my memories of these days I keep forgetting Roger couldn’t see us, guarding him as we descended to the operating room. I think it must have been Al we had to thank for the conversation that kept us going, all the way to the swinging doors. Then it was time for us to leave him, and Roger l
ooked up at us—couldn’t see, just looked up helplessly and started to cry. I froze and couldn’t think what to do, but his mother bent close and said, “Roger, take a deep breath.” We squeezed his hand and they wheeled him away.
Nothing has ever been longer than the next three hours, not even the day he died. Al had made a plan that we would meet Sheldon at the Bank of Los Angeles and go out for lunch to the Deli Diner, a fast-food place Sheldon owned on Third Street. I would have been content to just sit upstairs going crazy, but obviously the parents had the idea we ought to keep distracted. At the bank, Sheldon was forcibly cheerful and introduced us to his new assistant, Len, coyly remarking to me behind his hand as we went into the Deli Diner that Len was “even more gorgeous than the last one, don’t you think?” I did not hazard an opinion. By now I was used to him saying the wrongest, dumbest things imaginable, anything to avoid emotion.
I was feeling more and more unreal, it being the first time I ever waited out surgery in my life. You almost go into suspended animation, scarcely breathing, like the aura before a seizure, everything physical heightened. This is all fear, but the craziness of it is worse in public places. Sheldon’s restaurant partner, Don, personally served us and tried to say something cheery about Roger: it was the one time Al and Bernice turned away and swallowed tears. Everyone forced me to eat. Sheldon didn’t go back with us to the hospital, nor would he visit Roger throughout his stay at Jules Stein. Something about the blindness freaked him out, touched a nerve he couldn’t control. My rage and contempt toward him were boundless all that week.
Kreiger had said he would call us upstairs as soon as he came out of surgery, and by the time we returned, Roger had been in for two hours. There was no one else in the waiting area or walking in the corridor. It was as if this wing existed just for us, which only made us seem more separate and more lost. I told Al and Bernice I had to go for a walk, then went out and tramped the UCLA campus for a half hour. The main thought in my mind throbbed like a migraine: If the operation didn’t work, then I would have to be the one to break it to Roger that he was blind forever.
It was a flawless California day, bright and cool, the sky Della Robbia blue. I stood on the hilltop terrace outside the library, with the green plain of the playing fields below and the Bel-Air hills to my right on the western ridge. He’ll lose all this, I thought with a pang, and then I’ll be all the eyes we have. Always for the two of us the window on the sublime was the eye in nature or the eye in art, a seeing refined by twelve years of wilderness and museums, till we saw certain things exactly the same.
I hurried back to the medical center, trying to screw up my courage, but still his parents waited dull-eyed in the third-floor lounge. We sat silent for another half hour, and I was around the corner by the pay phones when the call came through at the nurse’s desk. I froze inside as I heard her beckon Al. Then I walked around to join them, whatever the verdict was, and heard Al say: “Yes, Doctor, yes. Oh, thank God.” Bernice and he were huddled together over the phone, crying, and I put my arms around both of them, the tears breaking from me at last, all for joy. There was nothing before or after quite like that flood of relief—calling the family, spilling the good news, then waiting impatiently for Roger to come up from Recovery. About an hour later the gurney appeared, and I saw the great bandage over his eye like a battle dressing. As they passed me I leaned down and said, “Rog, it worked, the operation worked!” And he smiled, still a bit groggy: “Oh, good.”
“Oh, good.” If every minute of the nineteen months was worth the struggle, reclaiming a corner from death, some moments were the most exalted of my life. The sheer gratitude after coming through fire is so profound, so first-things-first, it makes you laugh inside when people say you are brave. And there wasn’t a shred of anxiety in Roger as we started up the mountain again. He stayed in the hospital for about a week, encouraged daily by Kreiger’s satisfaction as he eyed his work. Then came the sensation of light again when the nurses changed the dressing. Bernice and I had to watch this procedure closely, as we would be changing the bandages for ten days after he came home, cleaning the eye and putting the drops in.
The protocol for the dressing change was an enormous responsibility, but I champed at the bit to learn it. Finally, something to do. And when you do this part you come to see there’s something nearly sacred—a word I can’t get the God out of, I know—about being a wound dresser. To be that intimate with flesh and blood, so close to the body’s ache to heal, you learn how little to take for granted, defying death in the bargain. You are an instrument, and your engine is concentration. There’s not a lot of room for ego when you’re swabbing the open wound of the eye.
Indeed, we were all so busy afterwards, and calming down from the heart-pounding fear of the four days preceding the surgery, it began to seem the merest technicality that Roger was still in the dark. Basically, once the operation was safely past I didn’t see him as blind anymore. On the contrary, we were engaged in the process of restoration. For once we were going to get something back. And if that seems like more denial, wildly out of phase with Roger’s continued imprisonment, even he didn’t start to despair till a few weeks later. By which time the heightened urgency had given way to a slow recovery of the blur of the world, detail by agonizing detail.
But I brood still about how it must have felt, blind all those days, even with the hope turned up full volume. He would turn his head now when I came into the room talking, reaching out with his ear instead of his eyes, which had always been searching and playful at once. Blue and mild and deep as Walden Pond, which Thoreau called “earth’s eye.” The subtlety of a thousand looks, the range of expression so different from the starkness of the turned head, the cocked ear. And then what it must have been like to be walking outside on somebody’s arm, or indoors feeling his way from room to room.
I don’t mean to insult him with pity. He was brave and resourceful, stubborn and gallant, and his blindness left him in a temple as clear-eyed as Borges’s library. But it was also his buoyant stride and ease of motion that were compromised, he who had such a hunger to be out in the world. He’d always preferred to walk, never cared how far away we parked, we’d get there soon enough, and meanwhile there was the pageant of the crowd to see. He’d spent three years in Paris doing what bohemians do, walking around and sitting over coffee, all the better to people-watch. The street was where he contemplated life, part of why he was so plainspoken and had no airs, preferring a clean, well-lighted place to three stars any day. I can’t imagine what it was like, that growing sense of the world stolen.
Perhaps you compensate here as well. Through all the long convalescence of the eye, Roger had an immense patience, trying to outwit the blur and stealing things back by fragments. And if his liquidity of movement had been snatched from him, he was quick to concentrate the remainder of his power: talking and listening. In that regard what gave him the most coherence was the work he was doing with his mother. He’d sit with her in the living room for hours as she read aloud documents and the mail, with Roger directing her where to file and whom to get on the phone. As I puttered around the study, it was such a pleasure to hear the rhythm of things being put in their places.
Since he was feeling strong from the AZT, the main medical business of the day was the change of dressing, morning and night. And always the ritual question: What do you see? Within days of returning home he could make out the shape of us standing over him. Then a week later, when the shapes acquired edge and detail, color began to seep in again. I remember him seeing the red in the Erté print on the opposite wall.
His parents spent the whole day with us in the house, but were living at that point in a furnished apartment in a building Sheldon owned at Doheny and Melrose. Sheldon had taken a house in Malibu with a boyfriend for May and June, and he thought the apartment would be easier for Al and Bernice, since there were workmen at the Bel-Air house, acid-washing the stone floors. This apartment business occasioned a good deal of fuming an
d friction in the family, because Al and Bernice had trouble with the laundry, and there weren’t enough forks or a can opener. Sheldon wasn’t good about any of it, annoyed to be bothered with details and insisting on the inviolability of his time at the beach.
Meanwhile Alfred and I had a windfall. A project was literally dropped into our laps, by a couple of producers we’d worked with in the past. It was the first thing we hadn’t had to go out and scrounge for, and would provide a structured amount of work to do, a few hours a day for the next several months. So seductive are the old ways that Roger and I were soon ventriloquizing life before the calamity, when the two of us were taken up with work but always glad for the end of the day, when the pals regrouped.
Yet in the weeks that followed the operation, my most concentrated energy went into the garden. We hadn’t planted, had hardly even watered during the whole last year. The trees were dense and shaggy, the shade so dark that only the dinosaur ferns had survived. The sunny patch above the pool was just a sprawling bougainvillea banked above a patch of arid dirt. When Roger was resting I’d go outside and weed and plant and water. In California you don’t have to be very evolved as a gardener to fill the yard with green, and I’d report my progress as Roger slowly regained the light in May.
Or he’d sit over lunch in the dining room, which opens on a courtyard under the trees, and we’d talk as I knelt and planted impatiens. Then he’d come out with his father to see what he could see. I wanted to make a place for him to discover, one color after another, something concrete to come back to. On the cracked terrace under the Chinese elm I potted a bushy gardenia full of buds. I suppose it was hard for either of us to believe anymore that we were going back to the world out there. We hadn’t been to a restaurant in eight months. So when I finished the gardening I had a new pool heater installed, then brought in an electrician to put temple lights under the shrubs. Here was where we would spend the good hours of the summer.
