Borrowed Time: An AIDS Memoir (15 page)

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 And
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.

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 doctors 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.

Yet it's still very difficult to accept that men of our tribe succeeded in obtaining these elixirs, however worthless, while the rest on the moon were clamoring. Long before Roger got sick there was a persistent AIDS rumor about one of the major players in the fast lane, a zillionaire I'd trailed through the club scene in New York while researching a script in '83. He supposedly went to Europe every other month to have his blood replaced. It's hard to separate such exotica from the monkey-gland youth search that has always landed the well-heeled in the clinics of Zurich. The seductive twist to this tale had it that the man regained his health completely after a year of very dicey symptoms. I know we can't all go to Switzerland; the mind reels at the cost of
that
private room. I'd just feel a whole lot better if I knew for sure exactly what it was I couldn't afford.

Roger struggled through one drug study for four months till it almost killed him, another that gave him nine months' grace. They were closed systems that asked for anonymity, that wouldn't have been able to expand their resources no matter how loud people banged on the door. We came into the research wing of the nightmare at the earliest stage, with the merest handful on the lifeboat. But once inside, we pleaded for everybody. Why was it taking so long? If they had it here in this room, how could they keep it from those who had no other hope? What business was it
of the FDA's?

Our own power source was a man with impeccable connections across the board, from Sacramento to Washington. He also had status as an academic insider in the UC system, such that his calls were returned the same day by everyone from the president on down. He and Roger had known one another since Roger was a kid, and there was never any question but that his full clout was at our disposal. Behind the high fence of experimental drug research he was tireless and unfailing, a mover of mountains.

And he understood that Roger and I were not going to wait; if we had to go over to France to get started on something, we would. In hindsight I wonder if perhaps we were precipitous. What they call the "honeymoon" after the first infection—when a person with AIDS will often feel better than he has in months—could well have gone on for a year or more. Nothing said Roger had to be on an experimental therapy within eight weeks of his hospitalization or else. Indeed, now I see how innocent we were about just how uncertain experiments can be. Bred as we were to literature, perhaps we leaped too quickly to happy endings. But every clock was ticking like a bomb. Having watched so many die without a chance, we couldn't let it slide. Death was close as the wall of this room, so what did we have to lose? Besides, courage doesn't precede action. The action releases it, like endorphins in a marathon runner.

I'd think sometimes how radically altered Paris would look when we got there, filtered as everything was now through the gauze of mortality. Over and over I'd picture the bullet holes in the stone walls on the Île de la Cité, where Resistance fighters were gunned down in the street. Here and there, beside the scar in the stone where a bullet had struck and ricocheted, was a small marble plaque:
Ici tombe Jacques Vassal le 12 juillet
1944. Here one man had fallen on a particular summer's day. If life was pocked like the walls of Paris now, at least it would be Paris, and Madeleine would be there. We wouldn't have to live in the barracks.

Then our power broker put us in touch with a researcher at UCLA who had access to an experiment about to start in Immunology—a different drug from HPA-23, as good and perhaps even better. I'd be on the phone to Craig at every juncture, feeding him data, because he had two high-placed friends as well, one a distinguished immunologist in Houston, the other a doctor in Stockholm. For a while I couldn't be sure if we were talking about one drug or four, but I was beginning to grasp the notion of what "antiviral" signified. All the great breakthroughs in the antibiotic department were marshaled against bacterial agents. There had never been a magic bullet for viruses, and AIDS had come along just as some small progress was being made. Or as my Ferrari doctor was wont to tell me, AIDS would prove in the end to be a great boon to medicine.