A&U magazine essay, Second Acts column: “Hanging On”

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“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.

“Ahoy, mate!”

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.”

(Click on link for full piece)

Hanging On

Bruce Ward

as published in A&U Magazine, “For the Long Run” column, 2017

“Lazarus Syndrome” is one of the terms coined by psychologists and sociologists to describe the condition of many long-term HIV survivors – those of us who were given a death sentence in the 1980s and 90s, only to have it unexpectedly and suddenly revoked at the eleventh hour. We somehow made it to the other side – hanging on day by day, pill by pill – until, seemingly out of nowhere, the effective treatment known as HAART (Highly Active Anti-Retroviral Treatment) appeared in 1996. 

I acquired the virus in 1984, a year before it was isolated and named. In 1986, an antibody test for the virus (then known as HTLV-III) was made readily available, and my result was confirmed. 

I have now been living with what we now know as HIV for 32 years. I have known both the Before and the After of the drug treatment cocktail that dramatically changed the course of the epidemic, twenty years ago.

And I share a common bond with many of my fellow longterm survivors. 

In 1996, we were the ones who had made it to the other side – bloodied, shell shocked, and uncertain of the future. 

 Well-meaning friends and family members, undoubtedly themselves relieved that the “epidemic was now over,” urged us to return to our so-called normal lives. But much of the damage had been done: careers ended, relationships thwarted, finances ruined, friends and lovers lost, psyches scarred.

In 1996, I witnessed men on their deathbeds become their former bodybuilder selves, seemingly overnight. But no one really knew then what was to come: the new wave of afflictions, the secondary phase for those of us whose bodies and immune systems had been racked by years of viral infestation and toxic chemicals. Lymphomas, heart disease, high cholesterol, bone loss, diabetes, and neuropathy would now add to the list of ailments that already included depression, fatigue, body fat abnormalities, sinus infections and PTSD.

In less than a decade, I would experience nearly all of these conditions, like a medical checklist created for those lucky enough to hang on. 

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: cruise ships filled with laughing, flirtatious young men; yachts with blue-blazered captains and champagne-swilling heiresses; sailboats with a joyful skipper, tilting his headsail into the wind while his blissfully straw-hatted fiancé dips her delicate toes into the rushing water; canoes with happy men and women paddling their first blush of romance; even kayakers who, though alone, are healthy and robust, their triceps ablaze with the knowledge that a lover and a good beer awaits them when they return to shore.

Some of them wave as they pass by. Others barely notice me. 

“Take me with you!” I cry. 

But to no avail. 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.

“Ahoy, mate!” 

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 in 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 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.

And then I wake up.

Roy Hoffman, famous in West Village literary circles in the late 20th century, lived his entire life with cerebral palsy. He rarely complained about his illness. In his memoir, Tom’s World, Hoffman wrote:

“My condition is…certainly no physical barrier to an entirely adequate imitation of everyday life.”

An entirely adequate imitation of everyday life. This seems like the perfect phrase to describe what it often feels like to be living with HIV as a longterm survivor. This is what it feels like, going about one’s life in a constant state of anxiety, sadness, anger, anticipation, and hope, fighting isolation and antipathy, hanging on, while the rest of the world keeps strangely spinning.

Second Acts: Bruce Ward

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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.

Michael Musto • PRIDE “1980s: “Underground” Episode 4 • Photos courtesy FX © 2021. FX Networks. All rights reserved

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 • PRIDE “1980s: “Underground” Episode 4 • Photos courtesy FX © 2021. FX Networks. All rights reserved

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.

Tez Anderson • PRIDE “1980s: “The Culture Wars” Episode 5 • Photos courtesy FX © 2021. FX Networks. All rights reserved

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.

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“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.”

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.

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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?

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.

“Okay.”

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.”

“Thanks, John.”

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.

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(to read previous chapters, please type in “aumag” in search box, or click on:

https://aumag.org/category/columns/years-of-living-precariously/

“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.’”

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.

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My review in A&U Magazine of the phenomenally-popular U.K. Series, “It’s A Sin”, finally beginning to air in the U.S. tonight, on HBO Max.

(click on link to read review. Please feel free to come back here to comment! And don’t forget to “follow” if you have not already. Thank you.)

bit.ly/37nC6I9w

“For those of us who lived during that time, and survived, It’s a Sin may be emotionally triggering. But, because such care is taken in the creation of its characters, the ultimate effect will be, for some, cathartic. It was for me.” A&U’s Drama Editor Bruce Ward reviews “It’s A Sin.”

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Welcome to my site, “Mental Ward”! To receive automatic email notifications of future posts, please enter your email address in the box provided. WordPress members: simply press “follow”.

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), type “aumag” in the search box. It’s best to start at pt. 1 (“Last Dance”) 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.

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“The Shot Heard Round the World.” 1985. Remembering Rock Hudson’s press conference with Doris Day. “Years of Living Precariously”: Part IX of my ongoing chronicle of the early years of the AIDS pandemic, in A&U Magazine

bit.ly/3olp1Vn

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.

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 TalkLover 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.


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Years of Living Precariously, A&U Magazine, PT. VIII. 1986: First Ray of Hope?

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First Ray of Hope?

On September 29, 1986, my picture appeared on the inside cover of Time magazine, on the index page, one of the three highlighted articles for that week. The picture was again on page 61, only this time larger, at the bottom center of the page. The title of the article was “A Ray of Hope in the Fight Against AIDS”. Underneath was the subhead: “While not a cure, an experimental drug called AZT prolongs the life of patients.”

1986: First Ray of Hope?
Part VIII of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic
by Bruce Ward

Pandora, the first mortal woman, received from Zeus a box that she was forbidden to open. The box contained all human blessings and all human curses. Temptations overcame restraint, and Pandora opened it. In a moment, all the curses were released into the world, and all the blessings escaped and were lost——except one: hope. Without hope, mortals could not endure.
—Jerome Groopman, M.D., The Anatomy of Hope

On September 29, 1986, my picture appeared on the inside cover of Time magazine, on the index page, one of the three highlighted articles for that week. The picture was again on page 61, only this time larger, at the bottom center of the page. The title of the article was “A Ray of Hope in the Fight Against AIDS”. Underneath was the subhead: “While not a cure, an experimental drug called AZT prolongs the life of patients.”

In the picture I am seated at my desk at the New York City Department of Health AIDS Hotline, where I was employed as a hotline information counselor.

It is a nicely framed shot: I am on the phone, left hand on receiver, pen held firmly in right hand, papers arranged semi-neatly on desk, a folder with the word ‘AIDS’ partially covered underneath my right arm. An in/out mailbox frames the lower left of the picture. A very professional-looking health education poster announcing the HRA HELPLINE is behind my right shoulder, in red and black. Behind me, my co-worker, Don, mirrors my pose, with his right hand on phone and his left hand handling a pen. I am wearing a blue and green striped button-down shirt. My hair is curly. My summer tan is still lingering. I am twenty-eight years old.

It had been two years since I had returned from Hawaii. The small pea on the left side of my neck was still a small pea, no larger and no smaller. Otherwise, I felt fine. I went about with my life, trying to keep up with the dizzyingly changing information while still honing my skills as a counselor, educator and interviewer.

Despite the creation of anonymous testing sites in early 1986, most gay men, including myself, were not running out to get tested for fear that the results would not be as “anonymous and confidential” as promoted, and that a round-up to a deserted island was in the imminent future, as Senator Jesse Helms suggested.

The idea of an isolated island didn’t seem so bad, actually. Much more fabulously festive than the leper colonies on Molokai, I imagined. But I balked at the idea of some conservative nut sending us there. It would have to be on our own terms.

William F. Buckley suggested that the potential perpetrators of disease distribution be tattooed on—where else?—the buttocks. In his own words:

“The objective is to identify the carrier, and to warn his victim. Someone, twenty years ago, suggested a discreet tattoo the site of which would alert the prospective partner to the danger of proceeding as had been planned. But the author of the idea was treated as though he had been schooled in Buchenwald, and the idea was not widely considered, but maybe it is up now for reconsideration.”

I actually do not think the Time Magazine photo was posed. Though I may be wrong. I remember the photographer taking our picture. I’m not sure if I knew then that he was from Time or that he was there for an article about AZT. I certainly wasn’t expecting it to be so prominently displayed in a national magazine.

But the photograph wasn’t about me. I wasn’t the subject. I was the cog in the wheel, the comforting voice on the phone, the city health educator who kept careful notes and checked off appropriate boxes of each logged call. I was anonymous and confidential, nameless and (until September 29, 1986) faceless. I was an emblem, a symbol, on the periphery, part of the larger picture but not the main event. I was the face of the “first ray of hope.”

I see this as the calm before my own personal storm. I look at the photograph of my twenty-eight year old self, and the moment floods back to me in a perfect confluence of emotion and detachment. I think this is why I am now able to chronicle it from a personal viewpoint. Memory takes distance. So I travel back and absorb.

As I stare at the snapshot, I can feel myself going down again, down that rabbit hole, through the Looking Glass, into another world, another me. It was thirty-four years ago, but it seems like another life, someone else’s life, but also my life. Me but not me. As in a dream in which I’m constantly trying to wake myself up.

I remember the names of my supervisors at the New York Department of Health hotline and what they looked like. Susan was a raven-haired Jewish former hippie turned social worker. Stephen was a buttoned-down and horned-rimmed spectacled WASP. Susan was tougher. Stephen was into discussing feelings.

I remember Don, the co-worker sitting behind me in the Time photograph, and his calm demeanor. I remember Rebecca, another hotline counselor, and her girlfriend, Lourdes, a medical student, and our discussions about my fathering their child.

I remember the square, state-funded, industrial room, and the posters Scotch-taped to the walls, each with a corner always curled up or down, until somebody would smash a palm on the fallen edge so that the poster could stay up for at least one more day.

I remember the sssss of the radiator in the winter and grimy paint-peeling windows we had to lift from the bottom to open. I remember the smells of pencil shavings and Xerox paper and the ring of the telephones (a loud brrrinngg brrrinngg) and the small square red lights flashing, each one representing a person on hold.

And I remember when Rock Hudson died, and how literally overnight the epidemic turned from a back page item in the New York Times to a national news story.

The world was starting to crumble but, at that moment, I still clung to the illusion that I was in control, that everything would be okay, that we would be safe, that medical professionals knew what they were doing. I believed, as did my co-workers, that if we just worked hard enough and long enough, this craziness would all be over soon. Surely, it couldn’t get worse or last much longer, could it? We were living at the end of the twentieth century, there hadn’t been a plague since… well, the plague. No, no, it’s not possible that half of a generation of gay men will be wiped out, most of them within a span of only ten years. Maybe this wasn’t really happening. Maybe it was just a dream, after all.


Want to start from the beginning? Link to the first column: https://aumag.org/2020/05/25/last-dance/.

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Harm Reduction: An Alternative Approach to Managing Addiction, Talkspace Newsletter

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Marco’s success story is remarkable, given his rapidly escalating drug addiction, many relapses, and descent into physical and emotional darkness.

Harm Reduction: An Alternative Approach to Managing Addiction 

In September, 2013, at the age of 45, Marco* tried Crystal Meth (also known as “Tina”) for the first time. Someone smoking from a pipe blew it into his mouth. A month later, he smoked it directly from a pipe. By the start of 2014, he began smoking every weekend. By March, he was smoking almost every day.

By August of 2015, Marco had lost contact with all friends and family members, and had lost his career. He smoked more, which added to his depression. He stayed at home, arranging Party and Play (PnP) encounters with other users, where they would consume the drug in order to enhance sexual activity. 

He states, simply: “I knew I wanted to die.” 

What is “Harm Reduction”?

When we hear the words “addiction” and “recovery,” many of us think of the 12-step model, founded in 1935 as Alcoholics Anonymous. For decades, however, there have been alternative roads to recovery, and the “harm reduction” model is one such approach that has gained in popularity and effectiveness in recent years.

While Harm Reduction may be used for all substances, this article focuses on the outpatient group program of “Crystal Clear,” at Mt. Sinai Hospital’s Addiction Institute in New York City, which works to treat crystal meth addiction, primarily among the gay male population. 

Harm reduction is defined by a focus on reducing the negative effects of substance use, rather than trying to prevent or stop the usage itself, incorporating a spectrum of strategies that includes safer use and managed use. Advocates of harm reduction support the goal of people working towards abstinence, but recognize that, for many, this process takes time and that setbacks do not amount to defeat.

 

Harm reduction isn’t a new idea. While the term can be dated back to 1987, the idea of minimizing the harm caused by substance use disorder can be traced to the 1920s. The International Harm Reduction Association (IHRA) was founded in 1996.

Principles of Harm Reduction

The IHRA lists eight principles of harm reduction. The first two of these principles embody the non-judgmental approach toward managing addiction:

1.    Accepts for better or worse, that licit and illicit drug use is part of our world, and chooses to work to minimize its harmful effects rather than simply ignore or condemn them

2.    Understands drug use as a complex, multi-faceted phenomenon that encompasses a continuum of behaviors from severe use to total abstinence, and acknowledges that some ways of using drugs are clearly safer than others

A common misconception about Harm Reduction is that it condones or encourages drug use. The eighth and final principle combats this fallacy:

8.    Does not attempt to minimize or ignore the real and tragic harm and danger that can be associated with illicit drug use.

For a full list of the Association’s eight principles of Harm Reduction check out the National Harm Reduction Coalition’s website.

Crystal Clear

Joseph Ruggiero, phD, is a clinical psychologist who has worked in the field of addiction for twenty years. He is the co-founder and director of the Crystal Clear program, the only program of its type for crystal meth addiction in New York City.

With crystal meth use among the gay male population reaching epidemic proportions at the start of the 21st century, Dr. Ruggiero saw the need for a program that specifically addressed the needs of gay men and crystal meth addiction.

Dr. Ruggiero does not believe that the harm reduction and 12-step approaches are in conflict. In fact, many of the program’s clients take advantage of both models. But he does believe that the harm reduction approach is more integrated, in that it can include tools such as psychotherapy, skills building, pharmaceutical interventions, support groups that encourage “cross talk,” and a deeper understanding of the complex of drug use in people’s lives. 

Ruggiero states that “harm reduction is about working on goals that the client wants to work on and not making assumptions, and meeting people ‘where they’re at.’” He describes an approach in which relapse, ambivalence, and struggle are often a part of that process. 

Making Choices

Kaitlyn Murphy, M.A., MHC-LP, co-leads the Crystal Clear program, and runs many of its outpatient groups. She sees the program as one which helps people make choices by looking at their motivations, while also giving them tools to achieve their goals.

During the COVID-19 shutdown, Murphy’s groups have been meeting virtually. With consistency in membership, over time, comes trust in one another. Members talk of shame and trauma and shared experiences. 

Murphy believes that success in the program is about someone reaching their goals and living a life that is happier or has meaning. It is about living a life within the person’s own values — which generally goes hand in hand with using less, and often leads to abstinence. 

Both clinicians talk about the amazing transformations they see in their clients.

This is one of those transformations.

Marco’s Journey

Marco was in a spiraling depression, with suicidal thoughts. He didn’t take his HIV medication for a year, and he weighed 90 pounds, down from his normal 145. That summer, his brother had made two attempts to check in on Marco at his apartment. During his third attempt, in October, he came with the police. The next morning, Marco admitted himself into the psych ward at Bellevue Hospital. No one close to him had ever suspected that drugs were involved with his deep depression; he had been adamantly “anti-drug” until the age of 45. 

He was at Bellevue for 10 days, for suicidal ideation. Upon his release from Bellevue, Marco revealed his drug use to his brother.

But that didn’t stop him. As soon as he left the hospital, his drug use returned, and with a vengeance. In January 2016, Marco was out of a job and behind on his rent when a marshall came to evict him from his apartment.

In the summer of 2016, Marco’s use escalated further, from smoking to “slamming.”

“Slamming” is a term for injecting a substance into a vein, via a syringe and needle. Not all who smoke crystal meth slam. But those who do see it as the surest way to addiction, psychosis, and a precipitous decline in health, welfare, and social interaction. 

Seeking help

In August 2017, Marco began attending Crystal Clear group therapy, along with occasional 12-step meetings. During his first year, he continued to relapse. But, slowly and surely, the tools he learned through the program began to take hold and, with an enormous amount of strength, courage, and commitment, Marco was able to turn his life around. In August 2020 he “graduated” from the harm reduction program after two full years of sobriety. He is now studying to become a drug addiction counselor.

Marco’s success story is remarkable, given his rapidly escalating drug addiction, many relapses, and descent into physical and emotional darkness.

Understanding relapse is, in fact, a vital part of getting sober, according to Marco. The key to his recovery has been in recognizing the triggers and using the tools he has learned.

When he first came to Crystal Clear, he didn’t believe he could do it. After months of sobriety, he began to believe, for the first time, that he could stop using totally. Through the Crystal Clear program, Marco was at first able to process his recovery in a more responsible way, in a non-judgmental atmosphere, until he finally reached his ultimate goal of complete abstinence.

Recovery Takes Commitment

Marco’s journey to recovery may be an extreme one, but it is not at all unique. Some in his support group continue to struggle with addiction, after many years of use. Many have periodic relapses. Others have left the group and continue to use. And still, others in the group have died from drug-related causes. 

Despite the differences among the group members, there are striking commonalities: the progression from casual use to addiction; feelings of shame, trauma, and alienation that both fuel, and are the result of, addiction, as well as the sexual validation that comes from the drug’s euphoric and invincible powers.

The Harm Reduction model has helped group members make use of the tools they learn through the program. One member, Raphael,* states that, for him, the term “relapse” can be daunting, whereas a “slip” means that he needs to keep coming to group and committing, perhaps in a different way, to the tools he has learned. 

Members are discovering the deeper meanings behind their use. And that helps them to use more responsibly, less frequently, or to achieve abstinence.

Through open, honest communication, often by revealing wounds that have been locked up in shame for their entire lives, members find that recovery is possible, in an atmosphere of non-judgmental support and encouragement.

*Clients interviewed for this article used pseudonyms in order to speak freely. 

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