Chapter XIII of my ongoing personal chronicle of the 1980s, “Years of Living Precariously”, in A&U Magazine.
“Eventually, the movie houses closed. The Anvil closed, the Saint closed, the baths closed, Fire Island virtually shut down, Provincetown was Province-Ghost-town, the Castro became deserted. Dancing stopped. Laughter was muted. Every person was a potential Bodysnatcher. Entire armies of men sheathed in rubber. There was no joy in Gomorrah. Donna Summer had left the building. Young gay men had nothing to do, so they joined gyms.”
Reading my monologue, “Last Dance”, for the March 23, 2021 event, “It Starts With A Word: Dramatists in Times Square”, co-sponsored by The Dramatists Guild of America and The Times Square Alliance, by the Red Steps in Times Square, NYC.
For HIV Long-Term Survivors Awareness Day, June 5: A repost of my personal essay, “Hanging On”. Thank you for reading. Our voices must continue to be heard. 🙏
“For many years, I have had variations of this recurring dream: I am adrift at sea, clinging on to a flimsy life raft, while sailing vessels of all kinds pass me by…
…None of them can hear me; not on the cruise ship, the yacht, the sailboat, the canoe, or the kayak.
“Howdy,” some of them cry, seeing me out there in the deep.
Many are friendly. They mean no disrespect. They just somehow do not see that I am clinging to a raft, alone, and that I am scared. Perhaps it is my demeanor; nothing about me indicates that I am in any kind of pain or that I want to be saved.
“Take me with you!” I cry. But they hear, “Isn’t it a wonderful day?”
They do not understand. They think I am out for a swim.
Every so often, another life raft will come floating by. It is usually occupied by a person from those pre-cocktail years—someone who remembers the horror, who was there when it all started, and who remained as it devastated our lives. We are two souls lost in the night, finding each other floating in the middle of the ocean. And we smile because we have found another person who understands. Perhaps there will be no rescue, but at least there is some comfort.
And, at least for that moment, neither of us feels quite so alone.”
Musto captures the mood of New York City during those early years, when he states, “Everyone was filled with grief, terror, and rage. But you know what? The nightlife kept going….We were more bonded than ever. We had to leave the house and connect.”
Pride, FX Networks’ ambitious and compelling six-part docuseries on the LGBTQ+ movement, gives individual indie filmmakers the daunting opportunity to encapsulate the LGBTQ+ experience, from the 1950s to the “2000s,” in 45-minute segments per decade.
The AIDS epidemic is featured prominently in Episode 4: “Underground”, and in Episode 5:“The Culture Wars”, the 1980s and ‘90s decades, while left out entirely in Episode 6: “Y2Gay”, which spans the two decades of the new millennium.
With so many issues to grapple with in twenty years of “Y2Gay”, it is understandable that AIDS may take a back burner. But no mention of PrEP or U=U feels like a lost opportunity to follow up on the 1980s and ‘90s episodes.
Episode 4, “Underground”, focuses on NYC’s East Village, and immediately catches the vibe of the ‘80s, with the cacophony of honking yellow cabs, the hairstyles, the fashions, and, appropriately, Michael Musto, the Village Voice columnist and quintessential nightclub bon vivant of the 1980s.
Musto captures the mood of New York City during those early years, when he states, “Everyone was filled with grief, terror, and rage. But you know what? The nightlife kept going….We were more bonded than ever. We had to leave the house and connect.” And so we are brought, through archival photos and footage, to the Pyramid club, the drag balls, and the creators of the East Village scene, thumbing their noses at Reagan’s America. Much of the archival footage shown here is from videographer, Nelson Sullivan, who filmed over 1,200 hours, from 1982–1989. And his images are among the most moving of the series. Through his lens, he captured a scene that was losing all of its artists.
Ann Northrup, the activist-journalist who figures prominently in dramatic, rarely-seen footage of the ACT UP demonstration inside St. Patrick’s Cathedral, also speaks to the importance of Sullivan’s powerful images, when she says, “I’d like to think his archives are as valuable as the Egyptian pyramids. They tell you about queer life in the eighties in New York.”
In Episode 5: “The Culture Wars”, the focus shifts to San Francisco. As with “Underground”, the filmmaker examines viewpoints not always given visibility: The writer Jewelle Gomez, talking about how the Castro was “almost hollowed out,” and recalling the vital role of lesbians as caregivers during that time, and activist Tez Anderson representing the issues of long-term survivors.
Anderson states, “AIDS went from being a death sentence to HIV being a chronic, manageable illness. And for a lot of us it took a while for that to all kind of make sense.”
In addition to to some amazing archival footage, what makes these two episodes the most compelling is the inclusion of the issues of sexism, racism, and class, in addition to homophobia. We hear the often untold stories of lesbians, people of color, and individuals who are transgender and work as sex workers, who often felt disenfranchised from the more visible and “acceptable” activism, during those early years of the AIDS epidemic.
In addition to playing on FX, the series is streaming on Hulu.
1986: The Virus That Dared Not Speak Its Name Part XII of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic by Bruce Ward
Though my public affect was one of stolid nonchalance, I began a private descent into shame, fueled by stigma and rejection—from society, our government, potential paramours, and even from medical professionals.
I was experiencing a throbbing toothache, and I went to the dental clinic that was available to me through the City Health Department. On the form I was given to fill out in the waiting area, I dutifully checked off that I was HIV-positive, and that I had been exposed to the hepatitis C antibody (as were 80% of NYC gay men at the time), meaning that I was not a “carrier” of the hep C virus and was not infectious.
After waiting an hour in the dental chair, both a female hygienist and a male dentist entered the room wearing rubber gloves, surgical masks, and fearful expressions. They took turns giving my teeth a perfunctory prod with a piece of equipment.
“It looks like you’ll need a root canal,” the dentist informed me.
“We’ll be right back,” intoned the hygienist, as they again both rushed out the door, closing it shut behind them.
I waited in the chair for another hour.
When the hygienist returned by herself, still suited up in her HAZMAT uniform, she informed me that I did, indeed, need a root canal but that they would not be able to perform it at their clinic.
“We would need to autoclave the equipment for twenty-four hours prior to the procedure in order to sterilize it,” she stated mechanically.
“We’d also have to scrub down the entire office, including the walls. And we are not equipped to do that.”
But what about my root canal and my impacted tooth that was hurting like hell?
“You will have to find another dentist,” she informed me.
After spending three hours in the office, two of them waiting with a bib tied around my neck, I was hardly in the mood to argue. Besides, I was beginning to take the mantle of “outcast” in stride. I skulked out of the office, feeling like a leper of Molokai.
After a couple of days had passed and I had consulted with Stephen, the Hotline supervisor, I realized that my instincts were right: These kind of precautions were unnecessary and showed an obtuse misunderstanding of medical knowledge.
Stephen urged me to file a complaint with the state’s Human Rights Commission and I did. I was later told by the lawyer that three other people had also filed similar complaints against the same dental clinic.
Word of the complaints was brought to the press and I was contacted on the phone by Art McFarland, a reporter at WABC, one of the local news affiliates.
I agreed to an interview and I met Mr. McFarland and a cameraman in his office.
At this point in the epidemic, there was a great distinction in the media in regards to being HIV-positive, having AIDS-Related Complex (ARC), and being diagnosed with AIDS. AIDS was a dirty word and it carried with it the connotations of death and nasty sex and extreme infectiousness. Being “positive” seemed more innocuous, like you were cheerily optimistic, not so infectious. Maybe you weren’t going to die immediately. Maybe you got the virus another way, a “nicer” way, say, through a blood transfusion.
Because I had not yet had an opportunistic infection, I was not labeled in the dreaded AIDS category. This helped fuel my hopes that I wasn’t really “that sick.” I also naively believed that everyone else understood the distinction among the terms. Imagine my surprise when I watched the news report that night and saw the graphic “AIDS victim” scrawled on the screen beneath my face.
I was furious and mortified. At least I’m sure no one will see this, I told myself. My face was only on screen for about ten seconds.
The phone rang.
It was my mother. A relative from New Jersey, who I barely knew, had called her, having seen the news report.
I hadn’t had the official discussion with my parents about my viral status being confirmed. But they were with me, after all, in Hawaii when I got sick, and they knew about the type of work I was doing and the very real possibility of my having the virus. I assured them that I did not have AIDS, and this seemed to comfort them. I was “merely” HIV-positive. They would have to somehow explain this to my New Jersey cousin, who had probably already fired off a number of phone calls.
But the cat was out of the bag, at least to some members of my immediate family. Cousin Bruce was a gay man with a gay disease.
I did indeed find a dentist, a gay one, who understood the necessary precautions, and I had my root canal.
The four of us involved in the complaint against the dental clinic filed a joint lawsuit and we won. There was little monetary compensation for any of us, personally. We had only wanted to send a strong message regarding unnecessary and discriminatory dental practices. The clinic was fined, with the money going to AIDS organizations. The most important outcome, however, was that the directors of the clinic were told to implement an AIDS education program.
I was proud to have had my hand in just a little part of the city’s anti-discriminatory policy, but I had also learned my first lesson in the consequences of revealing my status. A new scalpel had been introduced to incise my self-worth. But the shedding of shame that had begun with acceptance of my sexuality was now replaced by a deeper, more sinisterly invasive shame. I had entered a new era of secrecy and self-loathing. To paraphrase Oscar Wilde, I had the virus that dared not speak its name.
The Columbia University/NIMH research study offered free and confidential HTLV-III testing to its participants, and then that became a new element of the interviews.
As one of the study’s field researchers, I was also given the courtesy of taking the test.
The study participants were each asked to come into the Columbia office to receive their test results. But John Martin, the study investigator, felt, since I was an AIDS “professional,” that I could handle the information over the phone. He called me to tell me while I was on my shift at the NYC DOH Hotline.
“I’m sure it’s not a shock to you, because of Hawaii and your lymph glands,” his soothing voice intoned. “You’ve tested positive for the antibody. I know you know what this means, and there’s no reason to panic. My main concern, though, is that your T4 cell count is very low, 217.”
“What does that mean?” I asked.
We at the Hotline evidently had not been abreast on the very up-to-the-minute medical technology.
“You’d better talk to your doctor about that,” came the reply.
There was a pause in the conversation.
I could imagine John on the other end of the phone, thinking about the hundreds of other men he would have to tell this information to, that day. I could also imagine him flashing back to the year before, and to the very hot and very safe and very inappropriate one night of sex he and I had the night following our champagne celebration of the first Columbia interview.
What I did not know at the time of this phone call was that John had probably also tested positive for the HTLV-III antibody.
“Are you okay?” he asked.
I could almost sense the phone wires humming. It felt as if there was a great distance between us, at the moment my life would change once again.
“Sure,” I answered stolidly, looking around the Hotline room. Could people tell? Had I changed in an instant? Was I now officially one of the “others.”
“I’m fine. Thanks for letting me know.”
“Call if you need me.”
I had prepared myself for the result, but the confirmation of it with the words, “You tested positive” was still a shock. But it was true; I was okay.
What I wasn’t prepared for was how low my T4 cells were: 217.
I confided in Rebecca, who was working the shift with me. I had become close friends with her and her partner, Lourdes, and I trusted them.
The idea of my fathering their child suddenly vanished before me. I wouldn’t be a father after all.
I asked Rebecca if she knew what the T4 counts signified.
“Let me call Lourdes,” she replied with a sympathetic timbre.
A few moments later, Rebecca relayed the information to me with a grim face.
“A normal T4 count is above 1,000. You should see your doctor.”
The virus was cleverly eating my healthy immune cells and had already done a lot of damage.
At the time, we were telling callers that it seemed that perhaps 10% of those who tested HTLV-III positive would go on to develop AIDS. The virus had only been identified two years before, so there was no way yet to determine the likelihood of disease progression.
I went into battle mode. I thought that if I took care of myself, took vitamins, did not do drugs, watched my drinking. and continued to have “safer sex,” then I would easily be part of the 90% of the those infected who did not eventually get AIDS.
As the months and the years progressed, however, it became clear that it was not ten percent of those who would become develop AIDS and eventually die of the disease. The percentage would be closer to 100%.
There was little to be done when I received the news in April, 1986. The announcement of AZT and the Time Magazine article were still five months in the future.
The only experimental treatments were being sold underground by the PWA Coalition. I tried what was available. Egg lipids, Naltrexone, AL-721: They had all shown some efficacy in slowing down the progression of HTLV-III in lab rats, but had little effect in preventing the virus from attaching itself to human cells.
We were grasping at straws. But if there is no flotation device available and a straw is thrown at you, you grab it. Humans, I have learned over and over through the years, have a tremendous capacity for survival.
As time progressed, so did my anxiety. I could be as cautious and holistic as possible, but would I still be one of those 10%? By all indications, I felt that it would be just a short period of time (a couple of years? Months? Weeks?) until I began to show the visible signs of illness. The KS lesions would appear. I would begin to lose weight. My cheeks would start to sink into my face. I would develop pneumonia.
I was twenty-eight years old. In just a few months, perhaps, I projected, I would no longer be desirable, acceptable. I would, in fact, become a pariah, a walking manifestation of the disease that was ravaging my insides. Who would want me? Who would desire me? Who would love me?
John Martin would die of AIDS-related causes, six years later, in January 1992, at the age of thirty-eight. Only one part of the study had been analyzed and published in medical journals. There was so much important clinical data that showed, for the first time, the impact of the epidemic on gay mens’ social and sexual behavior. Though Laura, his assistant, attempted to keep the study funded, at least for the collection of data, most of the study results—seven years of it—died along with him. John was #49 on my list. By the time the transformative pharmaceutical “cocktail” was introduced in 1996, forty-four more of my friends and colleagues would succumb to the ravages of this unrelenting, and indiscriminate, virus.
Rock Hudson’s announcement changed the hotline from a periodically active business with a handful of phones to a non-stop barrage of frantic citizens, anxious and frightened, wanting information on mosquito bites, swimming pools and the sharing of eating utensils, apartments and make-up brushes.
Of course, there were also serious concerns: questions about kissing, oral sex, the blood supply, testing, mortality rate—questions to which we could only attempt an approximate answer, on information that was changing by the minute.
On the forms where we recorded the calls, there were columns in which we would log information, such as the gender of the caller, sexual orientation, referral made, etc. The most complicated category was the one labeled “Reason for Call.” Reasons included: “Member of high-risk category seeking information”, “Testing”, “Symptoms”. Many times, these categories overlapped.
In the category of “Risk Factor,” the overwhelming majority of the calls were what was categorized as “The Worried Well.” Those in low-risk categories at the time consisted mainly of white, non-IV drug-using heterosexuals, calling about casual contact.
Even though we received extensive counseling in handling our hotline calls, it didn’t take a degree in psychology to realize that behind every hysterical call about mosquitoes or swimming pools lurked a fearful secret about a clandestine affair, a drug-using past, a sexual orientation. Sometimes a call revealed deep fears of one’s ability to be a mother, or a lover, or a friend. The calls were a constant mix of the profoundly poignant and the absurdly irksome. Some examples from my journal, November 5, 1985:
• Woman calling saying she bought a fabulous apartment on Christopher Street and afraid of getting AIDS from a building that had “90% AIDS people.” She was afraid if the super bled in her apartment.
• An Hispanic woman saying she was “desperate.” This was a very personal call. Her husband (ex?) was dying from AIDS, in a coma. She felt betrayed that he had sex with other women. She was very religious. She was now extremely worried about giving AIDS to her children. She cried when I told her she could not give AIDS to her children through casual contact. She told me…I was the only one she could really talk to about this.
• Many men calling about prostitutes. When asked if he ever took in semen, one man said, “I’m a man, not a woman!”
• Woman with small bruise on her scalp. Her hairdresser had a cut on her finger. Could she get AIDS that way?
• Man who owns a live sex show in Times Square wants information to prove that sex with his wife on stage was safe and not a reason to close the show (!) Also wants assurance that lesbian sex was safe.
• A woman calling to say that she had red pimples on her face which went away when she ate some escarole in chicken broth, and that this was a cure for AIDS.
• A mother whose son is gay and living with her. It is against the religion and a moral issue. His sister won’t enter the house until he gets tested.
At home, at night, I would go through my little wooden box of cocktail napkins, matchbook covers, and scraps of paper, with scribblings of first names and phone numbers, and I would make lists of “who I did, what I did with them, how many times, and what level of risk.” In that way, I could fairly ascertain that all roads led to that fateful night in Honolulu.
I ran the scenario of that night over and over in my mind. I tried to remember every detail. I fashioned alternative endings. I attempted to recall his real name and his real cities of origin and destination. I envisioned the moment of impact. Was it really him? Could it have been another time, another place, another person? I thought of my immediate somatic reaction to the exposure.
I tried to forgive myself for my carelessness. I knew intellectually that a virus had not been identified at that point and that, even so, I had been practicing “safer sex” in 1982, before hardly anyone was even aware of the risks. I told myself I understood the reasons I had allowed myself to throw caution to the wind.
I reminded myself that the doctor said my illness could have been a “tropical disease”. Perhaps this wasn’t the virus, after all. It could have just been a coincidence that I became violently ill so soon after my encounter. Perhaps I made it out safely and now I had been given a chance to start fresh.
If I could just take back that one moment. That one moment frozen in time. I thought: if I could just take it back or change it or had said, “No.”
For years, I would blame myself for that one moment.
I think of the years between 1980 and 1985 as the most joyously innocent of my adult life. I was young, I was healthy, I was starting a career, I was having fun. For five glorious years, I felt free and happy and fairly bursting at the chance to leap into the world. The door to that world began to slowly close with each death, with every Columbia interview, with the constant barrage of anxious and frightened callers to the Hotline. And then the door slammed shut after I received my own test result.
4/15/86—I have a very heavy heart tonight. My test results from Columbia came back yesterday. It’s much worse than I thought… I expected HTLV-3. But I did not expect the extent to which my immune system was weakened….217 t helper cells…
Bruce Ward is A&U’s Drama Editor, and he has been writing about the AIDS epidemic since its inception. His plays, Lazarus Syndrome and Decade: Life in the ’80s, have been produced throughout the U.S. Bruce was the original Director of the CDC National AIDS Hotline, and he was honored by POZ magazine as one of 2015’s POZ 100. You may follow him at: bdwardbos.wordpress.com.
On this site, you will find links to my published articles, particularly my monthly column, “Years of Living Precariously”, for A&U Magazine, my chronicle of the early years of the AIDS epidemic. You will also find other articles, radio broadcasts, podcasts, and video performances.
To access all “Years of Living Precariously” chapters (each about a 6 minute read), click on YOLP in the categories, or type in aumag in the search box. It’s best to start at pt. 1 (“Last aDance”) and work your way forward. Then you’ll be all caught up until the next installment! 😎
Please feel free to comment and share, if you feel moved to do so. Comments are always welcome! And thank you for reading.