Queer and Loathing: Rants and Raves of a Raging AIDS Clone (24 page)

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Authors: David B. Feinberg

Tags: #Biographies & Memoirs, #Memoirs, #Gay & Lesbian, #Nonfiction, #Literature & Fiction, #Essays & Correspondence, #Essays, #Politics & Social Sciences, #Social Sciences, #Specific Demographics, #Lesbian; Gay; Bisexual & Transgender eBooks, #LGBT Studies, #Gay Studies

BOOK: Queer and Loathing: Rants and Raves of a Raging AIDS Clone
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“Hi, my name is Dave. I’m gay and I have AIDS. Pleased to meet you”? The only time I feel comfortable not disclosing my serostatus is during phone sex, but I still feel guilty faking orgasms. I figured that coming out in Details would save a lot of agonizing phone calls and postage stamps.
Originally appeared as “HIV +Me” in
Details,
January 1994.
 
I officially got my AIDS diagnosis on New Year’s Day 1993. I knew in advance this would happen and there was absolutely nothing I could do about it. Recall the classic photo of Harold Lloyd dangling from a clock, hanging on for dear life? Imagine me up there, hopelessly attempting to stop time. I could blow up the ball that drops in Times Square at the stroke of midnight; I could hijack a Lear jet to travel endlessly through the International Date Line. Alternatively, I could make it appear that time had stopped or slowed down to an imperceptible rate by reading Michel Fou cault or calling Time-Warner cable and being put on hold for half an hour. But all these solutions would only forestall the inevitable.
I’m not ready to be called a PWA yet. The phrase “AIDS victim” is definitely not chic. “AIDS patient” is inaccurate, because I’m hardly spending most of my time in the hospital. There must be
some
acronym that accurately conveys my anxiety and despair.
I hold the Centers for Disease Control and Prevention responsible for my predicament. I’ve been HIV-positive for more than a decade, but as yet I have had no major health problems; most of my difficulties have been related to bad reactions to prophylactic drugs. But my T-cells have been lower than 200 for more than a year now. Effective January 1, 1993, the CDC revised the definition of AIDS, adding a few new opportunistic infections and cervical cancer to the list; it also added the surrogate marker of fewer than 200 T-cells.
 
 
 
Getting AIDS was like turning thirty: The anticipation was horrible, but the actual event turned out to be a nonevent. With my brand-new AIDS diagnosis, I could conceivably go on disability and become a full-time AIDS activist, but I fear my health care would suffer. I’m somewhat addicted to my current doctor and my current health insurance.
There’s something very Sylvia Plath about dreading the decades. After I turned twenty there was an adolescent suicide-attempt (an overdose of Flintstone vitamins: I paced through the drugstore for hours, but couldn’t find the nonprescription sleeping pills). And now I want nothing more than to live to forty. My father died at fifty-two of his first heart attack, so, somewhat superstitiously, that age seems to be an absolute limit. At least it was, before I knew I was infected with HIV
I remain a thirty-six-year-old gay white male with AIDS, formerly on the cusp of the epidemic, now fleeing the demographics. As the rate of infection lowers for gay men, more and more women, injection-drug users, and people of color are getting infected. This is undoubtedly due to the adoption of safer-sex practices among gay men; also, the virus has saturated the gay community. An estimated 50 percent of gay men in New York City and San Francisco are HIV-positive. AIDS has become a growth industry. I counted eight ads from viatical settlement companies in a recent issue of
The Advocate.
These companies buy life insurance from the terminally ill: the shorter your life expectancy, the better your return on investment. Then there’s LifeStyle Urns™, which offers quality cremation urns with a lambda etched on the lid. They run from $249 to $349, with an optional velvet lining for $18 extra, if you supply the material. I guess that’s to stop the bones from rattling.
 
My doctor takes a throat culture. I’ve had intermittent sore throats and been mildly fatigued for so long that I honestly don’t know what “normal” is. My doctor gives me a prescription for rifabutin to prevent MAI, an opportunistic infection similar to tuberculosis that typically strikes those with fewer than 50 T-cells. Today I am down to 84. My doctor says it might also work for my sore throat. In any event, it will turn my pee orange.
He also injects my left hand with alpha interferon to try to cure my warts. He does this directly into nine separate warts with a needle I find a bit too large. I daub with cotton as he continues to pierce me. By the time the process is over, my hand resembles Saint Sebastian’s. My doctor warns me that I may feel flulike side effects from the alpha interferon.
I never expected to be an expert on medical matters, and I still struggle. Now terms like “surrogate markers” and “nucleoside analogue” and “proteinase inhibitor” run trippingly off my tongue as easily as “slate-gray tile” and “track lighting.” I try to keep informed. I’m buried in information that I don’t have the time to read. I subscribe to GMHC’s
Treatment Issues,
John James’s AIDS
Treatment News,
Project Inform’s
PI Perspective,
the PWA Health Group’s
Notes from the Underground,
San Francisco AIDS Foundation’s
Bulletin of Experimental Treatments for AIDS,
and the AmFAR
AIDS/NIVTreatment Directory,
and I pick up ACT UP’s
Treatment and Data Digest
at the meetings. I usually pick up the PWAC NY
Newsline and The Body Positive
at the bookstore. Taking care of yourself is a full-time job.
Andrew Holleran wrote that the only news we are waiting for is the article on the front page of
The New York Times
titled “Cure Found.” Well, last winter the
Times
announced the latest cure on the front page and I didn’t even clip it. This approach was called convergent therapy: In a test tube, AZT, ddI, and pyridinone were able to completely stop the replication of HIV The theory was that each drug would target viral mutations resistant to the others. Then again, according to Sally Cooper of the PWA Health Group,
gasoline
kills HIV in the test tube. No doubt some people will read this and roam through underground parking lots, lurking in the shadows, sniffing exhaust pipes.
I’ve seen enough “Cures of the Month” going down like lead balloons in the past few years. There are the vampire approaches, where blood products from virgins or people who didn’t sleep around that much are introduced into the body, or extracorporeal hypothermia, where blood is drained and heated, then returned to the body. Ozone and herbal mixtures may be introduced through the orifice of your choice—my own personal favorite is bitter-melon enemas. Megadosing with vitamins such as beta carotene gives one an unhealthy orange glow and will probably be a fashionable look in some future century. I still remember that historic day when Larry Kramer himself announced the end of the epidemic, courtesy of compound Q, on the floor of a Monday-night ACT UP meeting.
Everyone responds differently to HIV infection. Some people change diets. Some join support groups. For me, ACT UP functions as a support group and a means of achieving change. I am personally skeptical of natural and holistic treatments. I am an atheist, after all. Later, when I’m down to 3 T-cells and about to have a deathbed conversion, I’m sure I’ll eat all the kelp I can keep down. I believe in taking vitamins, but I feel that megadoses will either flush through the system or poison it. Alternative and holistic treatments work for people who have faith in them. I am so skeptical I lay most of their efficacy on the placebo effect: I prefer Tic Tacs or Toblerones. Acupuncture, massage, herbal treatments, and aromatherapy probably enhance the immune system by reducing stress. We’re all waiting for some magical cure made of natural substances that has no toxicity. Unfortunately, it probably doesn’t exist.
Ten years ago I was tired of my obsession with being gay. The prospect of undergoing the exhaustive promiscuous sex necessary to retain my status according to Kinsey overwhelmed me. A little voice inside me was constantly reminding me that I was different and that I could hide this from the world if I chose and that I could deny it to myself, but no matter what I did I would always be different. Eventually I adjusted. I am still adjusting to AIDS.
I’m sick and tired of thinking about AIDS all the time. I’m simultaneously obsessed and repelled by the idea of AIDS. I would like to take a vacation from AIDS. (In Biarritz? Tunisia? Perhaps Uruguay?) I would like to spend just one day not thinking about AIDS at all, but the necessity of taking certain medications several times a day forces me to confront it daily.
Each day I take three capsules of AZT, along with six Zovirax, three Trental, two multiple antioxidant vitamins, one lysine tablet, and one aspirin. AZT is a nucleoside analogue that interferes with the synthesis of reverse transcriptase; thus, it inhibits the replication of HIV Researchers believe it is effective against HIV for up to eighteen months, and I’ve been taking it for three years. There are problems with toxicity and resistant strains of the mutating virus. Zovirax is an antiviral that targets the herpes virus. I’m pretty sure Zovirax is working. I haven’t had an outbreak in years. Herpes can act synergistically with HIV. My friend Glenn Pumilia experimented with stopping Zovirax, and his herpes came back virulently. He died on July 4, 1991.
I like Trental because it’s pink. Trental is another drug that may or may not work. It is a blood viscosity remover used to treat painful leg cramps associated with arteriosclerotic disease. My doctor prescribes it off-label because research indicates it may inhibit HIV in the test tube. I also take two antioxidant vitamins, the most expensive vitamin I have ever bought, sixty dollars for 250 pills. And lysine, an amino acid that suppresses herpes. And a tablet of aspirin. My friend Michael Morrissey was taking aspirin daily and it did wonders for his T-cells. I didn’t get the same effect, but then I was using Duane Reade generic and he was using Bayer.
 
 
After the doctor, I reward myself with an overpriced takeout lunch at the gourmet deli with the cute counterperson who has biceps the size of grapefruits. I generally go on sugar binges after dental visits, especially when I get root planing. I feel okay over the weekend, maybe a little weaker than usual. On Tuesday I am so exhausted I stay home from work. My body aches all over and I have a severe headache. I feel better Wednesday. My doctor’s partner leaves a message on voice mail at work; I call back to discover I have strep throat and Hemophilus, another common throat infection. I tell him I feel much better; maybe the rifabutin has cured it. Then at four I start shivering. I feel like going straight home, but I have to go to Tom Cunningham’s memorial at five-thirty. It is January 27, 1993. Tom Cunningham was ACT UP’s work-space manager for a year and a half, and he introduced me to the music of k. d. lang three years ago. We flirted together for several months. Then two years ago we had a violent disagreement about whether the Heritage of Pride Committee should have a special category of “Best AIDS Float” in the Gay and Lesbian Pride Parade. Tom was a tireless advocate for the rights of the disabled. He frequently interpreted meetings, concerts, and conferences for the hearing-impaired. I can’t miss this service. I take another rifabutin.
Bob Rafsky speaks at Tom Cunningham’s memorial. Bob is one of my biggest heroes. He went to a meeting with a Japanese pharmaceuticals company that was delaying work on a promising treatment for KS. Out of fury and frustration, he rolled up one of his pants legs and placed his lesion-covered leg on the table, a direct object lesson of his anger. I could only think of Nikita Khrushchev taking off his shoe and banging it on the table for attention at the U.N. Bob has challenged presidential candidate Clinton face to face to take action on the AIDS crisis: “You’re dying of ambition. We’re dying.” The AP photo of them face to face was in every newspaper in the country.
In a way, Bob Rafsky is the heart and soul of ACT UP. Through his eloquent and passionate speeches, Bob can fire us up. He is ACT UP’s unofficial cheerleader, always rousing us to attend the next rally or demonstration with a stirring call to action. Yet he is highly selective in his causes. Bob has the guts to cut through the crap and dismiss an irrelevant zap. “What does this have to do with saving lives? Why else are we here?” Bob Rafsky is our bravest warrior, and at the same time our ever-goading conscience.
Bob says that this is the last memorial at which he will ever speak. His endless eloquence always astounds me: It takes him longer to state his reasons for refusing to speak at another memorial than most other people’s entire testimonies. But then again, I am cranky and shivering. I love Bob Rafksy. Bob refers to himself as the Kaposi’s sarcoma poster child. He is obviously in pain. He says, “I feel that my speaking is also disrespectful because it flies in the face of the absoluteness of Tom’s death and all the other deaths, as if in the face of that my words could give a sense of closure, of significance, of comfort. In fact, another AIDS death signifies nothing and there isn’t or shouldn’t be any comfort. So I’ve made a vow that this is the last memorial at which I will speak.”
I bolt after the service and take a cab home.
People simply disappear. Obituaries are posted on the bulletin board at the gym next to Fire Island shares. I always wonder whether someone had just died when I see notices for furniture at drastically reduced rates. There comes a point when you realize you’ve gone to so many memorials that at the height of hubris you start thinking about your own, how to make it the craziest, the most memorable, the most outrageous—somehow forgetting that you won’t be in attendance. You fear you’re going to end up as a four-by-six section of cloth that keeps growing exponentially.
I’m sick and tired of red ribbons and the Names Quilt. There’s something “nice” about a red ribbon for AIDS awareness. There’s nothing “nice” about AIDS. Leave it to some design queens to transform a plague into a fashion statement. As for the Names Quilt, I don’t want to end up a rectangular rag, however suitably decorated. The textile responses to the AIDS crisis leave me cold. I prefer to wear my ACT UP button that says “ACT UP, FIGHT BACK, FIGHT AIDS” and have people on the subway cringe when they read the last word on it.

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