by Paul Monette
For they’d made a mistake sending us home with intramuscular instruction. Pentamidine doesn’t diffuse into the veins very well. It goes in like a protracted hornet’s sting and collects in a painful bubble between the muscles. The discomfort was so great he needed his Tylenol laced, which nodded him out the whole next day. I’d wake him up every couple of hours to make sure he was all right, frantic at realizing we were all alone, with no hospital staff to ask for advice. But in fact it was an extraordinarily peaceful sleep. Roger kept waking with a smile and telling me not to worry. It was such a luxury, he said, to doze away the day in his own bed, uninterrupted by the hammering routine of 1028.
But within two days we were begging Cope to let him come off the Pentamidine. By then Roger had welts from the shots on both cheeks of his buttocks, so sore that he had to lie on his side. The last straw was the Saturday dose, administered by a rattled male nurse who injected 2.5 cc instead of 2.0. Roger gritted his teeth against the pain as I ran out to Thrifty to buy a heating pad. It was not the last time I wanted to open up with an Uzi in the long line at a drugstore.
Yet when I wrote that night in my journal, the first dispatch from the moon, we had managed to leave the mess of the treatment behind us. Apparently even I could sometimes see the bright side:
Lying next to Rog in the guest bedroom. We went out for supper to Cock and Bull and took a walk down Cory St. I never thought I’d write in here again, I never thought I’d do anything again, but I record with gratitude and a sense of calm that we stepped out tonight for a plate of prime rib.
Here it breaks off because the jiggling of the pen was bothering him. In fact we were both rather purring, maybe even a trifle cocky, having the evening off like that. It is something you never expect to be a great strength, the talent for small pleasures. Of course it only gives you the inch; the mile is another matter.
Cope finally allowed us to stop the drug, on the fifth day home. By now Roger was out of bed longer and longer, champing the bit to get back to work. Though I thought it was too soon—he was still so gaunt and weak—we made plans for him to start going in at least part of the afternoon. Meanwhile, on April 1, Al and Bernice finished their two months’ sublet in Palm Springs. As they planned to be in town overnight, we invited them for dinner, which Bernice insisted on cooking. Roger was lying down when they came, and his mother went right to the kitchen to put together a meat loaf. I remember getting Roger up, and as we came through the study to the kitchen door he was right behind me. Bernice stood at the sink with her back to us, kneading the ground meat, when suddenly I realized Roger had disappeared. I followed him back to the bedroom, closed the door and found him in the bathroom, weeping.
“My poor parents,” he cried as I cradled his head in my arms. I rocked him and soothed him and said the right thing, but now I only hope I let him cry enough. Considering the sea of tears that I produced, Roger never cried much at all. Even then it was only a wail and five seconds’ squall, which always made the occasion that much more intolerable and wrenching.
Once he’d composed himself, it turned out to be an easy family evening, plain as the meat loaf, and next day the parents left for Chicago, satisfied we were on the mend. I began driving Roger over to Century City in the afternoons. For the first few days I hovered there, as if I might be needed to keep people from getting too close. I was like the hall monitor, trying to root out who might have a cold among that whole suite of attorneys. Roger had been doing work for a couple of high-powered types in the suite, both straight. AIDS to them was still page 48 of the second section, so I don’t think they even wondered. They liked Roger and were glad to see him back, and meanwhile when could he have the documents done?
Within a week I was leaving him off outside the Century Park towers at one and picking him up at four-thirty or five, with several frantic calls between to make sure he wasn’t too tired. He was so glad to return to a semblance of normalcy, though it frustrated him not to have more energy. He had two lawyering friends, Ackerman and Comden, with whom he was glad to be joking again, bemoaning the plight of the sole practitioner. I remember that time as so peaceful now, waiting in the Jag at five o’clock, parked at the curb like a Connecticut wife, as various three-piece men and women revolved in and out of the building, hyper with energy, meters ticking. At last Roger would emerge, looking a little rocky, but with his tie neatly knotted as ever and his briefcase firmly in hand. I felt such a flood of love for him then, and wagged like the dog and happily chattered as I drove us home to safety.
I have the evidence in hand that I laid down two or three pages of The Manicurist each day, but I scarcely noticed. In fact I would sit at the desk wanting to leap out of my skin, counting the hours till I could go pick Roger up. The role of the solitary scribe had become insupportable, but Alfred and I had nothing in the works together. And they were breathing down my neck at the studio. One of the rabid executives—they of the twenty-hour barracuda days—scheduled a 7 A.M. conference call, where I was shrilled at and all my pages spat on. I just watched the clock and waited to go back to bed next to Roger. I realize it isn’t a matter of great suspense whether or not The Manicurist ever got made. It was clearly doomed from word one. But at the time I was under the same gun as any writer with a high concept: Get it done now, make it like everything else, and this time make it funny.
My real work, as far as I was concerned, was to find out all I could about this disease. I talked to Craig nearly every day and thus kept up with the early word on HPA-23, the antiviral drug at the Pasteur Institute that was starting to draw to Paris desperate men from the U.S. If the main thing that got Roger on his feet was getting back to work, what fired me was tracking down a cure. It became a kind of compulsion, and gave me the best shot at a positive attitude as I reported my findings every night at dinner. Besides, it was all we had to hold up against the fearful statistics. We had a follow-up appointment with Gottlieb in the AIDS clinic at UCLA, during which Roger asked him how well his other patients were doing. Gottlieb said with a certain pride that he’d kept some alive as long as three years. The stricken look on both our faces was exactly the same. Three was the good news?
It was a constant battle against doom and gloom, as each new journalist stumbled morbidly into the ravaged arena. In April an article in Rolling Stone quoted the records of a monastery during a plague in the Middle Ages. The single entry for one year—in Latin, one assumes—was “More dead.” I didn’t read the piece, but Roger perused the first page of it, waiting for me to get ready to go for a walk. As I came into the study he let the magazine fall to the floor and said in a quavering voice: “I don’t want to die.”
“You won’t die,” I said forcefully. “You can’t die.” Always there to buck him up, if not myself. We’d follow every lead, I told him, and be knocking on the right door the minute they found the answer.
We always took our walk up Harold Way, which starts across from the house and runs along the brow of the hill from Kings Canyon to Queens. Both are steep box canyons, sparsely built because of the precipitous angle of repose, and covered with a tangle of chaparral as old as the mountain it grizzles. At the bend where Kings turns into Queens Canyon, out on that point is where Liberace used to live; he’d brought a brief flurry of publicity to the neighborhood when he tried to convert the house to a museum. That was before our time, and he’d settled on Vegas for archival purposes, but the wrought-iron gates still bore two curlicued L’s. Those were the days when the Hollywood Hills were known as the Swish Alps.
We must have taken that walk a thousand times in the six years we’d lived up there, but especially late in the evening. Often we made it a full circle by hiking uphill to the next street parallel to Harold, where there was an empty lot covered in century cactus, with the full Star Wars view, from the San Bernardino Mountains in the east to Catalina in the west, maybe seventy or eighty miles wide-screen. We’d had so many temperate moments there as we lingered to drink in the view from the eagle’s perch. The fir
st couple of months after the verdict we could still go the full walk every now and then, but at least some portion of it was his major form of exercise as Roger worked to build his stamina again.
One day early on, we were pacing ourselves up Harold Way, and the city below was smoky blue under the marine layer, the so-called Catalina eddy that is common on late-spring afternoons. Long before there was smog, the Indians had called the place Valley of Smokes. “Isn’t it beautiful?” I said with a rhetorical nod. I think what I really meant was how delicious it felt to be walking together again. Roger stopped, still a bit hunched with fragility, and looked out over the city: “But this is the place where I got sick.”
And I was stabbed with a certainty that none of it would ever have happened if we’d never left Boston. But enough of my guilt for now. I mention the moment here only to show he was as capable as I of such stark and devastated observations, in which the cup is bone dry. Yet I note these two especially—Rolling Stone and the April walk—because they were so rare. As it took a great deal to gather Roger to a burst of tears, so, too, he gave vent to desolation in the single throb of existential pain. A few words were all he needed to speak it clear, no matter how much we might say afterwards to make it go away.
Sometimes weeks would pass between such melancholy briefs. Did he therefore keep it all in? Of course I can’t say for sure, but here his Athenian balance served him well, in that he took it a concrete step at a time. An hour of work, a concert on PBS, a visit to friends we could laugh with—friends who hadn’t a clue. He could lose himself in things in a way I never could, not till much later. But if I have any sense at all of how we persevered so long, it comes down to an equal measure: an unwavering goal to beat it, and the group of two for an army. In combat Roger had no choice but to battle the physical side, while I engaged on the metaphysical front. A simplistic formulation if you take it too far, I know, but it took us further than either of us could ever have gone alone. “The pals,” as Roger used to call us, nudging me shoulder to shoulder.
Sometimes we’d go to the Detroit Street building together, and I’d be maddened by the Sisyphean tasks of the place, while Roger puttered about and got them done. Right after he came home he was fiddling with the plumbing one day in an empty apartment, and crouched by the toilet to get a closer look. I freaked out. The place was grubby and crawling with microbes. I wanted to wrap myself around him like a bubble, my need to protect was so desperate. Already I’d started to keep the surfaces of life insanely clean, wiping the phone and the doorknobs late at night with a cloth steeped in ammonia.
Yet there was an evening when we flared into a fight because I couldn’t remember if I’d run the dishwasher or not. I said yes, then Roger took a glass out, then I said no. And the tension broke with our nerves all jarred. There was so much panic just beneath the surface, in a world where a single unwashed glass could kill. Thus there was a level of protectiveness that really didn’t want him to go to work at all. What were we doing going back to normal? The only thing I wanted to do was be with Rog. I seemed to have no other plans.
Then he began to get better for real, the stoop went out of his walk, and I had no choice but to let go. There was a great lightheaded moment when he was washing up one morning and suddenly called me into the bathroom. The herpes scab at the corner of his lip, so black and crusted we had to put a Band-Aid on it before he went to work, had finally shed itself. It had been a last lingering reminder of the world of 1028, and we rejoiced to see it vanish. That is how minute the sharing is, how private the victory—someone to show that your scab is gone.
And if Roger was getting better, then I simply had to do something about the cloud of death that shadowed me. My appointment with Sam on April 4 was in the nature of a lecture on how to get over an opportunistic infection of the spirit. I’d clearly not accepted just how powerless I was, he said, and was stupefied with rage that I couldn’t command the internal workings of our two bodies. Nevertheless I must stop qualifying life “if Roger gets better” and start asserting when. And I must refuse to let us go quietly. Fighting was to despair what aspirin was to fever. Stop living in a state of premourning, Sam said.
I must already have pulled together some information about going to France for treatment, because I spoke of the awkwardness of providing cover. Neither set of parents knew, so how were we to explain going over to Paris for the summer, when Roger was supposed to be back at work? Sam replied succinctly: Who cared what they thought? No stone must be left unturned, no matter if it took us to Tibet. And even as I made whatever radical plans were necessary, he advised, I must also gear up to get back to some mindless routine. Have people in again. In short we must restore ourselves to our life, whose character had always been the opposite of morose and doomed.
We were about to join a community of the stricken who would not lie down and die. All together, we beat down the doors of the system and made it take our count. Some have sat in medical libraries wading through the arcana of immunology. Others pass back and forth over the border, bringing vanloads of drugs the law hasn’t got around to yet. This network has the feel of an underground railway. It could be argued that we’re out there mainly for ourselves, of course, and the ones we cannot live without. But on the way we have also become traders and explorers, passing the word till hope is kindled in places so dark you can’t see your hand in front of your eyes. If the government was going to continue to act as if we didn’t exist, if the medical establishment was prone to gridlock over funds, if the drug companies were waiting till the curve got high enough for profit, then we would find our own way. Whistling in the dark is whistling still.
We had been to the brink in March. Now that Roger was home, we had a window to let in air and a certain breathing room to fight. No time to waste, because no way to gauge how soon the window might slam shut on our fingers. My own hands flinched and balled into fists when I typed that line, recalling an afternoon in the spring of ’75. Roger had just moved into the apartment on Chestnut Street in Boston, and was cleaning windows in the living room while I shelved books in the bedroom. Suddenly he shouted in pain, and I ran in to find him trapped, his two thumbs jammed by the heavy window because the cord had severed. I still remember the sickening guillotine feel of the sash as it came away from the flesh, and engulfing him in my arms as his thumbnails flushed dark purple.
Yes, we’d decided to fight. No, the despair wasn’t gone. The two emotions jockeyed in our hearts. You had to be there all the time to know which was dominant in a given hour, a given minute—the clock doesn’t parse fine enough to tell how vast and swift the mood swings were. But if you have ever freed someone from pain, you know why it is that a mother can lift a car off her trapped and whimpering child. Give us then the bravado of days when we swore we would beat it, for underneath we were scared as ever, and always pleading silently, Don’t let it come again.
•V•
4/11 Wednesday
The closest I came to believing something higher—after the loss of the old Episcopal thing—happened in Greece, and centered on the Greek ideal: scholar, philosopher, athlete, warrior, citizen … it gave me a context. But how is that context still valid, when it seems like it only fits the joy of intensely living as R and I have been doing over the last years, all the Greek parts in flower. What’s left of that ideal? Just Greek tragedy, the horrors of fate? How to be a Hero—the thing the Greeks believed in most.
There wasn’t all that much to know in April ’85. The first drug anyone knew by name was HPA-23, and the first person in our orbit to go after it was Tom Kiwan, a lawyer who lived a couple of blocks above us in the canyon. We didn’t know him well, but Alfred was his neighbor, and Tom was at a stage of panic that gripped people by the lapels. Along with hundreds of others, he’d been monitored for a couple of years by the gay men’s health study at UCLA, his blood work updated every few months. In April a doctor told him his numbers were in the red zone. He also had thrush on his tongue, an ominous sign. There are doc
tors who now consider thrush evidence of full-blown status, but in the spring of ’85 the sliding scale of definition was still drowning in backlog.
In any case, Tom wasn’t waiting around. He flew directly to Paris to check out the operation at the Pasteur Institute. Fortunately, he and his lover spoke French, and were able to arrange for Tom to enroll as an outpatient in the HPA-23 study. The inpatients were living in barracks, many of them all alone and without a word of the language. For some it was literally the last ditch, a secular Lourdes. Tom would go back for the full two-week course of shots in May; he would be dead by Christmas. I can’t assess what time the drug may have gained him, but his story went into the pipeline like a crude-drawn map, explorer division. I know what a boost it gave us all to hear that someone was charging ahead. You run in the steps of the hunter before you.
By midsummer the world would know that Rock Hudson had been treated twice with HPA-23, but by then the news wasn’t any use to the pipeline, which was scrambling for information about the next generation of drugs. Because Roger and I had our own secret, I’m in no position to criticize anyone else’s profile. But all along I made sure the circuitous route of our search for the magic bullet got out to the AIDS underground, even when I had to deep-throat my source and say it was some vague “friend” receiving the drug. Neither do I blame the rich and well-connected for chasing cures available to them through the hierarchy of Who You Know. After all, Roger and I would never have muscled our way into two experimental programs without our own friends in high places.