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! 😎
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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 July 16th, 1985, Hollywood star Rock Hudson (born Leroy Harold Scherer, Jr.) appeared at a press conference on Doris Day’s ranch in Carmel, California, to promote Day’s new TV cable show. The once-virile and muscular actor had not been seen publicly for a number of months, and his gaunt and frail appearance with Day, his former movie co-star, was shocking to the nation. He was a shadow of his former matinee idol self, and his speech was slurred. This appearance became an international news item and was aired on television repeatedly over the next few days. It was rumored that Hudson had AIDS.
This was the “shot heard ’round the world.” It was the absolute moment that changed public awareness of the epidemic.
To the uninitiated: In the 1960s, Rock Hudson and Doris Day were the King and Queen of fluffy romantic comedies: Pillow Talk, Lover Come Back and Send Me No Flowers. In those movies, Day was apple-cheeked, jaunty and forever virginal. Hudson was virile, square-jawed and a playboy. He had a combative, yet breezy, chemistry on film and, privately, they were friends.
I was working at the time as an AIDS information hotline counselor for the New York City Department of Health. The virus was then called HTLV-III. I was twenty-seven years old.
Before July 16, the phones would ring at an intermittent pace. There were four of us on the shift, answering the push-button phones. We would talk and listen with an ear crooked to the receiver, cradled on shoulder, while the opposite hand grasped a pencil that checked off boxes on a mimeographed form. In the “Reason For Call” category, the majority of the checkmarks ended up in the “Worried Well” box: mosquitoes, swimming pools, casual contact with supposed members of a high risk group, and highly imaginative scenarios depicting every possible “what if” situation.
Two days following his appearance with Doris Day, Hudson was flown to Paris to receive a second treatment of a medication that was being developed there. It was called HPA-23. On July 25, after first declaring that the actor was suffering from inoperable liver cancer, Hudson’s publicist announced that Hudson had, indeed, been diagnosed with AIDS a year earlier.
But it is his appearance with Doris Day that catapulted AIDS awareness into the American consciousness. It got people talking. And panic set in.
The shock of this revelation was many-fold: AIDS was considered to be a gay disease, and here was the fantasy he-man—a likable, non-threatening Hollywood action figure, admired by men and lusted after by women, proclaiming that he was gay.
To many in the Reagan-era mainstream public, AIDS became a visible manifestation of gay men’s “otherness, “ and further supported the religious right’s view of the gay lifestyle as an abomination. With K.S. lesions and severe weight loss, many men were now forced to tell friends and family that not only did they have an infectious disease that would kill them, but they were also leading a secretly gay life.
And now, with his former co-star at his side, Hudson, the square-jawed pal of Ronald Reagan, unwillingly exploded the steel closet door of the AIDS epidemic.
At the press conference, Doris Day showed no sign of fear or pity or sadness. In fact, she glowed with pride as she purposefully gave her co-star a big kiss on the cheek. It was a wonderful and important moment: America’s sweetheart showing the world that, even though there was no mention of the disease, she was not afraid of casual contact with her friend.
Did Rock Hudson understand his place in history? Both he and Doris Day undoubtedly knew the importance of their appearance together. But they did not know, we did not know, no one knew, how much it really signified. It was the beginning. It was the shot heard ’round the world, the first blast from the cannon’s mouth, it was the beginning of the end.
From that moment on, the phones never stopped ringing. The Centers for Disease Control established the National AIDS Hotline, and I became its Director. People with AIDS were ostracized, demonized, shamed, blamed and shunned. Our President, Ronald Reagan, did not publicly speak about the epidemic until April, 1987. By then, over 20,000 Americans had died of the disease.
Rock Hudson died nine weeks later, on October 2, 1985. For the next ten years, the storm would rage, uncontrollably, despite the occasional and hopeful emergence of possible treatments.