“Of course not. ” They did.
“Wayne, Clinton has spent the last six months not naming an AIDS czar. He’s not about to name one before Saturday, is he?” I asked on Wednesday.
“It’s pretty doubtful.”
I gave my friend Terry Callaghan a copy of the speech because he had to work on Saturday. “Oh, Clinton named an AIDS czar today; you’ll have to change it.”
I was still madly editing the day of the speech. Wayne and Jan had brunch with me so I wouldn’t have to be nervous alone. Binky was home making strawberry monstrosities. “He made me clean the tiles on the bathroom floor,” I pouted. “Doesn’t he understand? Not today.” Binky had invited twenty people over after the rally for a strawberry feast.
I was scheduled to speak at 2:15. When I arrived at ten minutes to 2,
I
was informed that I had been bumped to 5:20. Three more hours to get nervous. I spent maybe fifteen minutes backstage before I spoke. I hurriedly crossed out the references to the hours of guilt-tripping that awaited the attendees. Perry Watkins and Miriam Ben-Shalom sat on lawn furniture and chatted with friends, eating sandwiches. I hoped they would disappear by the time I spoke.
Thanks to my friend Alessandro, “You Can’t Wear a Red Ribbon If You’re Dead” became a sound bite. All summer long, ACT UP recruitment posters were wheat-pasted throughout the Village and Chelsea. I felt like Tama Janowitz for a brief, fleeting moment. Everywhere I went, I saw my words.
Death before Forty
AZT is over in a big way. Put your Burroughs Wellcome blue-caps next to your Nehru jacket and last year’s bleeding-heart tattoo. The big fashion statement of 1993, the latest in antiretroviral nucleoside analogues, is d4T. d4T comes in tiny, tastefully subdued industrial-gray logo-less capsules. Echoing the theme of uncertainty in,this chaotic world, d4T is available through expanded access only in the Mystery Dose. For that personal touch, d4T is packaged in plain white-plastic bottles, hand-labeled with a unique identifier, label code, patient number, and lot number. I am patient D03952. At the top of the label I am admonished in reversed script to “Return this package and any unused medicine.” Two cylindrical silica-gel moisture-absorbent caps marked “Do not eat” are buried in the sea of gray.
After failing AZT (dropping T cells), ddI (neuropathy), and ddC (neuropathy again), my doctor has enrolled me in an expanded-access trial of d4T. It’s a good thing the pills are tiny, because I am instructed to take four pills twice a day. There are two doses in this doubly blind protocol. I imagine my blindfolded doctor receiving one month’s supply of pharmaceuticals from a blindfolded woman bearing scales who looks suspiciously like the image of Justice in a back alley behind the smoking chimney stacks of a multinational drug company somewhere in South Jersey. d4T is the fourth Drug for Testing in the nucleoside-analogue sequence. Subconsciously, it echoes the antithesis of one of my increasingly unrealistic goals: Death by Forty. When I attend those discouraging presentations on what we learned from the Berlin AIDS Conference, I find myself dispirited to hear my recent T-cell counts (in the neighborhood of 100) referred to as late-stage disease and severely immunocompromised. Chris DeBlasio, a friend I had met in Ty’s four or five years ago when we were both trying to pick up the same Floridian blond who worked at AT&T, was a personal point of inspiration and confidence to me as someone who had been in the 100 T-cell range for years with few or no ill effects. Alas. This last year was brutal to Chris, and he died two weeks ago. And now I find myself inching toward my goal of lasting until forty with somewhat less confidence. Would it be more prudent to plan a ridiculously retro fortieth birthday party complete with ABBA covers on the stereo, a bartender in a leather vest, and pink streamers, or should I spend my time planning my own memorial service?
d4T has the usual side effects: pancreatitis, liver dysfunction, and reversible neuropathy. “It’s not always reversible,” warns my friend Clay from San Francisco, a divine nephrologist who examined Ferdinand Marcos’s kidneys weeks before he died. A shirtless photo of Clay leaning from a branch of a tree advertised some sex service every week in the pages of the Bay Area Reporter. After “a tiny bout” of PCP last year, Clay’s gym days are over. Pulitzer Prize—winning Paul takes five pills in the morning and three at night, because he finds that d4T keeps him up at night. I have no worries about disturbing my sleep patterns. They’ve been shot to hell for years.
Sure enough, after one month of d4T, my T-cells are up.
My father referred to the danger signals on a car’s dashboard as “idiot lights”: By the time they turned on, any damage to the car was irreversible. I found this out in high school when I took Laura E. Grossman to Saratoga Springs and I filled the carburetor with water because the engine was running hot.
The idiot lights in my metabolism have been burning bright for years.
Unfortunately, I run out of pills at the end of the month, and have to wait four days for the next supply. d4T isn’t available at your friendly pharmacist’s counter. The local buyers’ club doesn’t stock it. You can’t buy it on the street at black-market rates.
A month later, in a move calculated only to irritate me, my doctor’s receptionist calls me at home on Friday while I’m at work, to announce that my shipment of d4T has arrived. This is similar to getting a yellow slip at 1:05 on Saturday afternoon that they have a package for me at the local post office, which closed at 1:00 P.M., and Monday is a federal holiday; consequently, I have to wait until Tuesday to pick up that special item from International Male that doesn’t fit anyway.
The first Friday in July, having returned from Tim Bailey’s aborted political funeral in D.C., I have another message on my machine concerning d4T. I assume that my new supply is at the office. I have enough for the weekend, so I don’t bother calling back. On Monday I’m too busy playing catch-up at work to call; on Tuesday I find out that my liver enzymes have gone through the roof, from 20 to 200. I must stop d4T immediately. Last Thursday by the earliest. I’m tempted to celebrate. My doctor warned me against any alcohol. Which is why you’ll find me at the Break that night at midnight, sitting in front of six empty glasses that formerly contained Shirley Temples.
At the GMHC/TAG/CRIA forum on the Berlin AIDS Conference, I hear good news and bad news. The bad news is that nucleoside analogues aren’t that good; the good news is that now doctors are telling their asymptomatic patients that they will support whatever treatment decisions the patient makes, including no treatment. Nucleoside analogues like AZT seem to be of limited effectiveness for a small window of opportunity; as for me, I’ve already jumped years ago. The good news is these relatively ineffective pills aren’t as toxic as previously feared.
Two weeks later I give my doctor another fifteen pints of blood. While I’m there, he checks my lungs, my feet, and gives meaBshot. The following day he tells me my counts are back to normal, and I should restart the d4T, this time taking two pills twice a day. I should see him in another two weeks for another blood test.
My feet start tingling in two days. This worrisome symptom comes and goes; it’s worst when I wake up. I’m not really sure, but I think it’s neuropathy. I decide to stop the d4T.
In the past three weeks, Jon Greenberg, David Kirschenbaum, and Chris DeBlasio have died.
I feel guilty. Neuropathy is so sketchy. How do I tell my doctor? I feel I haven’t done my best for science. I would gladly donate a few lymph nodes and withstand several months of minor pain, maybe even a nice scar, in the cause of scientific progress. Yesterday’s
Times
had a human-interest story about a subject on the three-pronged antiretroviral protocol. Last February a group of researchers announced that they had found “what may be the Achilles’ heel” of the virus in laboratory tests. It turns out the researchers were the heels. Yet this subject wasn’t dropping out of the protocol because the theoretical underpinnings of the trial had been blown to pieces. He had a severely damaged immune system, according to the article, and his T-cells were 552, up from 414. I would kill to be at that level. At that moment I wanted to destroy every laboratory test that I’ve taken in the past six years.
I remember a time in the early sixties when the future was bright, science was a virtue, and progress was another step toward utopia. The space program had already brought us Tang, the instant powdered citrus beverage, and Space Food sticks in aluminum wrappers. Products gleamed with brightly colored contrasting patches of “NEW!” “IMPROVED!” “PROTEIN-FORTIFIED!” What would We do without chemicals? Anything was possible if you just added water.
The more technical the name of the scientific compound, the more promising it appeared to be to me. Burroughs Wellcome’s 566C80 not only kept PCP at bay, it actually killed the organism, at least in the test tube. Now that it has been approved with the boring name Mepron, it isn’t half as effective as I had hoped it would be.
Understand that I’m biting my tongue as I say the following:
AZT is shit. ddC is shit. ddI is shit. d4T is shit.
Honey, I’m over these nucleoside analogues. Can we try something else now, please?
Keep the date November 25, 1996, open. I am still planning on having that fortieth-birthday party, come hell or high water. At this point, I fully expect it to be a huge bonfire on the lawn of the White House. I’ll be there. Let’s all join hands and form a circle around my funeral pyre for progress.
The Gastronomic Me
It is six in the morning on a school day in June 1993 and I’m lying on the bathroom floor, curled up in the fetal position, clutching the throw-carpet to my breast, and wondering whether I have a ruptured spleen, appendicitis, or an ulcer. Is it a peptic ulcer? Is it a duodenal ulcer? Or is it merely gastric acid from hell? I anxiously thumb through my mass-market paperback edition of
Man’s Body: An Owner’s Manual
for hints and suggestions. If I am going to spend the rest of my life in the bathroom, I should probably unearth that spare phone from the storage cabinet and plug it into the jack next to the toilet for the ultimate in meaningless glamour. Binky plods in (pat, pat, pat) and asks, concerned, “Are you okay?”
I croak, “Not really,” and he returns to bed (pat, pat, pat) as I lie collapsed in a heap on the bathroom floor, wondering when it will end.
This is my fifth attack. Each usually lasts one hour and then after I’ve lost all hope it gradually dissipates (thanks, perhaps, to the tablet of Pepto-Bismol I’ve taken, or the Maalox mint). It starts with a sharp pain in my stomach. My entire torso is racked with discomfort, as if I’ve pulled every single muscle from an overly optimistic workout. The pressure is such that I cannot think, I cannot rest. Once I tried a bath: If I immersed myself in water, perhaps I would feel weightless. It worked for exactly five minutes. I try to remember the last thing I ingested. A glass of orange juice. Too bitter? Too sour? What exactly is the cause of these attacks? Is it anxiety? If so, why wasn’t I born with this? Could it have anything to do with the minor domestic squabbles I have with my boyfriend an average of four times a day?
I find myself becoming a parody of everything I’ve read or seen. I am Portnoy’s father, sitting on the toilet for an hour every night, reading the obituaries. I am the Mormon in
Angels in Amer
ica who takes a Pepto-Bismol chaser after a slug of Coke. But, worse, I am my own father, who died at the age of fifty-two, sitting up in bed and clutching his chest at five in the morning, thinking it was heartburn when it was actually a heart attack.
Damn. I already wrote my fucking speech for Gay Pride, three weeks in advance, so instead of procrastinating and agonizing about it every night in the abstract and having nightmares about standing in front of ten thousand people naked without a speech, I could constantly revise it and agonize about it every night in the concrete and have nightmares about sitting in the emergency room as they announce me at the rally. My doctor is off in Vienna or Amsterdam or Berlin, at another international AIDS conference. Why bother doing
anything
in advance? What’s the point of standing in line for half an hour to get tickets to Bette Midler’s concert in September and then finding out they take only cash and then going to the cash machine and then going to another outlet that is closed for lunch and then returning to Tower Records and finally getting tickets, when I may not even make it and I might have to give them away, or, worse yet, waste them?
Today was the day I was finally going to finish Randy Shilts’s epic saga of betrayal,
Conduct Unbecoming,
and maybe start something easier like
War and Peace.
Today was the day I was going to do twenty-four minutes on the Stair Master at the highest setting. Today was the day I was going to finish my play, work on the novel that has been on hold since a year ago November, and sketch out a few more essays. But it looks as if I’ll spend most of the day on the bathroom floor.
There is no blood in my stool. There is no stool. I want to vomit but I can’t. The best I can manage is to cough. I go to the living room to lie on the couch, and my boyfriend plods into the bathroom (pat, pat, pat), uses the toilet (flush!), and goes back to bed (pat, pat, pat). The cause of his concern reveals itself to me. I can’t lie on the couch. I go to bed and try to lie down. I can’t. I get up and walk around. And gradually it goes away.