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.
“It is as if the residents of Provincetown are the culmination of all who have gone before: the Portuguese fishermen and their descendents remain, as do the parsimonious New England Methodists, the ‘60s hippie-artists, and the ‘70s Village People handle-bar mustached gay men. The iconoclasts, drag queens, lesbian comics, townies, high school students, even the babies: they all seem to know that they are in an enchanted place, a place untouched by time or animus.”
A friend recently asked to read this piece from 2007, so I am adding it here. For those who cherish the magical “specialness” that is P’town, and for those who have yet to experience its wonders, this is my Valentine to the little Portuguese fishing village, at the end of the world. I hope you enjoy it.
I am once again standing on the breakwater overlooking the Long Point lighthouse in Provincetown, Massachusetts. I come here off-season, to this tourist town that shrinks from 60,000 in the summer to 3,000 residents after Labor Day, when I feel the need to clear my mind. Provincetown in off-season is a place I often go for healing – from a crisis in work or family or relationship, or just for respite from the din and sensory overload of New York City life. Standing here, looking out to the immense Atlantic, I feel as if I am at the end of the world.
Located on the very tip of Cape Cod, Massachusetts, P’town (as it is affectionately dubbed by residents and tourists alike) is surrounded by water. If you were to walk to the easternmost point of the peninsula, you would encounter the Long Beach lighthouse, one of the oldest in the country, built in 1826. If you continued east past this historic landmark, you would fall into the Atlantic Ocean. After P-town, there is nowhere else to go. You either stay put or go back in the direction from where you came.
The Mayflower Pilgrims knew that when they landed in Provincetown waters in 1620. After a five-week sojourn, during which the adult males signed the “Mayflower Compact”, the Puritans determined that the terrain was too rocky and the water too salty for suitable colonization, and they turned their ships around and sailed back up the coast of Cape Cod. According to a timeline of Provincetown located on the online site, provincetowngov.org:
At last, in late December, the Mayflower and her company departed this harbor and sailed over to Plymouth, where they may or may not have noticed a certain inconsequential geological object known ever after as ‘Plymouth Rock.’
Ever after, Provincetown would be a place for the intrepid, the stalwart, a place that set man against nature. It would become a sanctuary for the idiosyncratic, the loner, the outsider, and a destination for those on the run: a place to hide, but also a place, once arrived, where you could be yourself. Many who ended up there were also running and hiding from something, from someone. You didn’t ask why your neighbor was there, just as you didn’t want him to question you.
Provincetown’s bad boy image probably began with the first settlement of fishermen’s shacks on the beach. It was known as a wild place inhabited by a cosmopolitan group of fishermen, smugglers, outlaws, escaped indentured servants, heavy drinkers and the “Mooncussers,” who were said to have lured ships to their doom by placing lighted lanterns on the beach at night, thus forcing ships to wreck on sandbars offshore and then salvaging the cargo.
In 1908, P’town became a safe harbor for black slaves, before heading north to Canada, as part of the Underground Railway System. During the early part of the 20th century, the town was a haven for writers, artists, and those living embracing the “Bohemian” lifestyle, including Eugene O’Neill, John Reed, Louise Bryant and Edna St. Vincent Millay. The 1960s brought counter-culture hippies and flower children; gay men and lesbians began to migrate there in the 1970s, and in the 1980s, many people with AIDS found in P’town a community in which they could live with comfort and dignity, and in safety from political and personal harassment.
* * * *
I first started to going to P’town in the 1960s, when I was a baby. My parents, who lived in suburban Massachusetts with my two older brothers and myself, would often rent a cottage in the town of Dennisport for two weeks in August. Dennisport, located about ninety miles from Boston and sixty miles from P’town, is almost directly situated at the halfway point of Cape Cod, which is marked by the Sagamore Bridge on one end and Provincetown on the other.
Those Cape Cod weeks, which stayed fairly constant each August through my early adolescence, constitute some of my fondest childhood memories. Our contingent of family and friends (which would often include grandparents, cousins and babies) would spend leisurely days on the beach, lazing in the sun (no ozone warnings then), building sandcastles and frolicking in the waves of the icy cold Atlantic. As a baby, I was taught to swim by my mother, who would hold me in her arms and chant, “One, two, three, dunk!” as we dipped beneath the water’s surface. This was followed the next summer by my father’s tossing me up and across the sky into the ocean, following the same numerological mantra. Our evenings would be spent eating clam rolls and soft-serve vanilla/chocolate swirl ice cream, and playing miniature golf, our faces beautifully bronzed and our minds slightly delirious from a day of incessant sunshine.
On the first cloudy day (God willing – a chance to let the tan seep in), we would pile in the car and drive to Provincetown to “see the artists” and buy chochtkes, the Yiddish definition for charming, worthless seashore junk. My mother, having studied as an Art major at Hunter College, reveled in the counter-culture scene of the 1960s. She had made the choice at nineteen to marry my father, two years her senior, an Army 2nd Lieutenant during World War II. During their first two years of marriage, he was often stationed away from my mother and, when logistics permitted, she would join him. It is difficult, even today, two years after my mother’s death, to imagine her living in Army-issued housing in Macon, Georgia, in the sweltering summer, without air-conditioning. But she was young and they were in love. Following her graduation from Hunter, she chose the more conservative role of suburban wife and mother, at least until all of her three children were grown, when she went back to graduate school.
She once revealed to me that she had smoked pot and “didn’t like it.” Unlike the picture of her “shvtzing” in the Southern heat, I could well imagine my mother smoking (or at least trying) dope. I could see it in her during our weeks on the Cape – the housewife persona would begin to shed during her first day on the beach, as she dove into the waves, wearing her fashion-of-the-moment one-piece bathing suit and flowered bathing cap. Upon reaching the shore, she would doff her cap and shake out her semi-dry hair. Even smoking her Kent 100 cigarettes, she looked like a young Vivien Leigh or Elizabeth Taylor. Everyone said so. I see photos of her now and I agree.
When we went to P-town, the mask of propriety shed even further. In those days (pre-gay Liberation Stonewall), Provincetown was not thought of as a gay-friendly town per se – just artistically inclined and accepting of all bohemian lifestyles. My mother would study the sidewalk portrait painters creating their caricatures. My own portrait was painted twice – once when I was twelve, and the second time when I was fourteen. The first painting was lost in shipping during a family house move, and my mother insisted that I have the exact same pose replicated the following summer. The portrait of my youth still hangs in the dining room of my father’s house, like Dorian Grey overseeing every holiday meal.
Even my buttoned-down father was more relaxed during these summer months, though he more so while ambling on the Dennisport beach than amidst the crazy energy created by the artistic hedonism of P’town.
Between the ages of ten and fourteen, I spent four consecutive summers at a sleep-away camp in Wellfleet, two towns north of P’town. During each of these summers, I would travel to Provincetown twice: once in July with my cabin-mates and counselors (by camp bus or by riding the hilly twenty-mile terrain on three-speed Schwinn bicycles), and once in August with my parents during “parents’ day”. Whichever way I got there, the visits were similar: engorging myself on fried clams, soft-serve ice cream and penny candy, and being both awed and titillated by the counter-culture hippie artists. They seemed so happy, so free of the shackles of suburban conformity. They were not hemmed in by mind-numbing nine-to-five jobs. They didn’t have their dreams quashed by the orthodoxy of raising two-point-three children and the aspirations to an upper-middle class consumerist lifestyle. They had made other choices. They weren’t my parents.
My last time in P-town as a teenager was when I was seventeen. Then, at age twenty-two, I came back, this time refitted with a new identity. During those intervening years, this refuge for ‘60s Bohemians had become a major gay and lesbian tourist destination, and I was now a major gay tourist. It was 1981 and I was horny. After years of suppressing my sexual nature and desires, I was the kid in the penny candy store. P’town was no longer just fried clams and street artists and ice cream (though it still was all of those.) It was men and dancing and men and bars and drinking and laughing and men and dancing. And men. One man, in particular. I fell in love with the houseboy at my guesthouse. The affair ended disastrously after we tried to transfer an idyll romance into the real worlds of New York and Youngstown, Ohio, but in those five summer days, I discovered my first Provincetown transformation as an adult; I felt a freedom in my bones that I had never dared to imagine. Dancing to Laura Branigan’s “Gloria” on the deck of the Boatslip, consuming seafood pasta with a group of New York gay friends (i.e. not my parents), getting stoned on the beach at noon and drinking copious amounts of beer at midnight, having heart-to-hearts with a person I was falling in love with, underneath a full moon and a blanket of stars: these were all new experiences for me. P’town had again worked its magic, in a different way from when I was a child or a teenager.
Each time I journey to P’town, I go with no expectations. And each time is a transformational experience. The restaurants and shops change. The costs of owning a home, eating out, staying at a guesthouse, have become almost prohibitively expensive. But there things about the town that never change. When I was a baby, my father shot reams of film footage of with his 8mm Kodak Brownie home movie camera. We still have these movies, now transferred onto videotape (itself now also a relic.) One of those grainy reels contains images of P-town’s Commercial Street, the main thoroughfare. Some of the details are different, but the scene is the same: Automobiles still inch along the narrow street, tourists still window-shop for tacky t-shirts, and restaurants and bars still dot the street. The cars are now red Jeep Wranglers instead of blue Ford Mustangs, the fashions are different, but one detail has remained the same: there, clear as a the red crustacean on its shingle, is The Lobster Pot, in its same location, on the corner Commercial and Standish Streets. Still the best place to order fresh lobster, unadorned, the Lobster Pot has been a staple in Provincetown for over twenty-five years.
It is this consistency that keeps me coming back year after year, no matter the season. The home mortgage rates may rise, and the names of the restaurants and shops may come and go, but the P’town city council has been adament about retaining certain by-laws year after year. Despite the absurdity of allowing cars to peck their way through Commerical Street, the traffic remains. The restaurants and shops fill every space on the street, and there are no chain stores. The restrictions on building new property, from as height requirements to expansion to water useage, are enough to thwart a new owner. Except that there is such good money to be made. There is comfort in this consistency. It ensures that, along with always being a haven for misfits, outlaws and outcasts, P-town is also a place where one can go home again: there is a solace amidst its crazy constancy. This also helps in its transformational qualities: in its atmosphere of comfort, it is easier to try on a new identity, to escape an old life (if even for a short while), to forge a new beginning. And one either stays or returns back North, hopefully with a new-found sense of purpose.
* * * *
As the Pilgrims would have attested, even the journey to Provincetown takes determination. This is the primary characteristic of the town: most of the tourists, and certainly all of the residents, have a purpose for being there. They are there for a reason. One does not mistakenly slip into Provincetown. It is not a place that can be passed by. It is a destination.
During the fall and winter months, the number of travel options is limited to car, bus or plane, since the ferry from Boston stops running in October. I live in New York, but have family in Massachusetts, and this weekend I have rented a car for the expedition to my spiritual homeland. I haven’t made this trip in a while and have forgotten the number of obstacles involved. First, I must dodge the quintessential “Boston driver,” for whom a left-turn signal on a three-lane highway is considered a sign of weakness. After getting through the dense Boston traffic on the confusing Central Artery, I am faced with a myriad of quick decisions, as road signs indicating “North” are really going South, and those cantankerous, signal-impaired South Shore commuters do not show much mercy as I try and make a swift directional decision. I am challenged by squeaky tin-horn honks by ladies from Saugus in hair rollers and Peterbilt truck blasts from grizzled tattoo artists wearing backwards Red Sox baseball caps. Both drivers give me their versions of the middle-finger salute, though only one of them accompanies this gesture with colorful regional language. (Hint: it is not the truck driver.)
I am surprised to find that the Powers-That-Be have removed the next official obstacle: the Sagamore Bridge traffic circle, located at the foot of the Cape. Every time I have reached this part of my journey, I have found the choice of exits to be overwhelming. There is a Christmas Tree store (which seemed to be busy even in August) at one exit, a Burger King at another, and signage covered in foliage at each of the four possible arteries. Legend has it that a family of four in a 1964 station wagon drove around for four hours, until they ran out of gas. They may still be there. Today, the rotary is paved over. This is regrettable, since I have been looking forward to this exit in order to use the restroom. I have now missed the only exit to the Burger King, and now I have passed the thirty-foot sign at the entrance to the Bridge, encouraging motorists to call the Good Samaritans hotline. After enduring aggressive accelerators, hieroglyphic highway signs and a full bladder, I can understand the impetus for an otherwise sane person to get out of his car and consider jumping.
Once over the bridge, the next challenge is the thirteen-mile one-lane road. While it can be quite lovely during the summer months observing the quaint Cape Cod scenery of five-dollar T-shirt stores and soft-serve ice-cream shacks, it is not so pleasant during the off-season. Besides, I still need to use the restroom. I am stuck behind a great-grandmother, out for a Sunday drive in her dead husband’s mammoth Cadillac (probably back from a day at the Christmas Tree shop), barely able to see over the windshield, driving twenty-eight miles per hour in a thirty per mile lane. Given that there are no passing lanes on this thirteen-mile stretch, I am forced to suck on the tailpipe in front of me. This is particularly maddening when, ahead of the tank in front, there are miles of empty road. We seem to be the only two cars on the road, when, just a moment ago, I was in the Grand Prix bumper car road race.
In the summer, I will almost always choose to take the Fast Ferry from Boston, which only takes an hour and a half, and on which I can get a head start on my tan. But as I get closer to my destination, I try to remind myself that part of the satisfaction of the trip is in its challenge, and that the journey can be as important as the destination.
After completing the thirteen-mile one-lane stretch of highway and leaving the little old lady in the dust, I drive past the towns of Sandwich, East Sandwich, Orleans and Wellfleet, and enter Truro. I am starting to feel relaxation enter my pores. Now is the time to roll the window down all the way. I stick my left hand out and let the chilly November wind tease my fingertips. Radio reception returns and I turn to the oldies rock station on the F.M. dial and blast it. I sing along with Bruce and Aretha. I smell the salt from the ocean, and hear the seagulls summon me to their territory.
Then I wait for the moment. I know when it will come. I climb the crest of a small hill, and, on the descent, I see, to my left, a row of little white cabins perched along the lip of the oceanfront, like pristine Monopoly pieces. It is the image from countless paintings by countless Cape Cod artists. In front of the cabins, I can make out the whitecaps on the ocean’s waves. And then I am on a two-lane strip of highway, with the ocean on my left, and the bay on my right, as I pass the sign, free of foliage, clear as a Welcome mat – the sign that says “Welcome to Provincetown.”
And I feel the weight of the journey, and the city I left behind, and the job and the halted relationship, and all the stress and anxiety –I feel it all begin to melt away, and I breathe in the salty air, and exhale a deep sigh of contentment. I have arrived.
* * * *
In keeping with its tradition of inclusion, Provincetown is a place that offers something for everyone – all ages, colors, nationalities, sexual preferences, religious and political beliefs are welcome here (though perhaps supporters of the current Republican administration would be advised to keep that belief to themselves.) The athletically inclined may choose the rigorous bicycle trail that ends with the rewardingly breathtaking apex of white-sanded Race Point beach. Other beach goers will ride in another direction, locking their bikes at a wooden fence on the highway, and make the quarter-mile trek across marshland to the more secluded and stony terrain of Herring Cove beach. Imbibers may quaff in the Rock and Roll atmosphere of the Town House, where heterosexual bikers in black leather jackets play checkers and sing karaoke, or in the dungeon of the Vault, where homosexual men pretending to be bikers will cruise each other and watch porn on television sets hanging from cages. Historically minded literati may choose the Atlantic House (known as the “A” house), where Scott and Zelda drank and fought. If you need to ask “Scott and Zelda who?”, you might want to sip martinis and watch a drag show at the Crown and Anchor. Gourmands are in luck: unlike many tourist destinations, the cuisine in Provincetown is truly exceptional, ranging from family-style breakfasts to romantic, pricey dinners of quail and shrimp-stuffed lobster.
One of the rewards of spending so much time in P’town is the discovery of some of the more secret pleasures, such as the dune shacks. The entrance to the trail that leads to the dune shacks is not well-known to the average tourist, and it can be a strenuous walk in the mid-day heat. These six or seven shacks are just that: shacks with no running water or electricity, located on the dunes, tucked away by the bayside. They are rented by fishermen, artists and writers, who want a simple place to lay their heads at the end of the day. One shack, in particular, is a well-loved secret place to those in the know. A journal lies on the desk in this spare space, with only a bed as the other piece of furniture. Guests enter the shack and write messages to the owner and to each other. It is a bit post-modern Thoreau and a bit secret society.
Ritual is also part of the comfort factor of P’town. Massachusetts, still clutching at its ethics, remains an early-to-bed/early-to-rise town, relatively-speaking, and P’town is no exception. The bars close at one A.M., and at that time, the place to be is on the street outside Spiritus Pizza, where surprisingly excellent pizza is actually served inside. Here, friends reconvene, and new friends are made, if only for the night. One summer, in the early 1990s, a rebellion occurred here: A resident of the town, upset that drunk tourists were using her flowerbed as a urinal, unearthed a little-known city ordinance stating that no one could step foot on the street after one A.M. Since this law had never been challenged since its inception, most likely during the Pilgrims brief layover, the local police were compelled to enforce it. This was not acceptable, particularly by the militant dyke townies, who took the opportunity to voice their visible protest by dipping their feet onto the street outside Spiritus, chanting slogans about police brutaility, while their gay brethren stood safely on the curb, cruising and eating pizza, confident that their sisters-in-crime would solve the problem. Which, of course, they did.
The decades-old ordinance was removed the next day, though public nuisance laws (such as peeing in lawns) were still in effect.
Most of all, though, for those of us who venture there year after year, and for those who came to visit and (unlike their Mayflower counterparts) actually stayed, P’town is special because of its people. It is as if the residents of Provincetown are the culmination of all who have gone before: the Portuguese fishermen and their descendents remain, as do the parsimonious New England Methodists, the ‘60s hippie-artists, and the ‘70s Village People handle-bar mustached gay men. The iconoclasts, drag queens, lesbian comics, townies, high school students, even the babies: they all seem to know that they are in an enchanted place, a place untouched by time or animus. Ellie, an eighty-year old transsexual, still sings outside Town Hall every night in the summer, the dogs still wear handkerchiefs around their necks, the hot straight men still cruise the gay ones, with their girlfriends clutching their hands tight. Marijuana is still the drug of choice here. “Cher” rides a motor scooter down Commercial Street, handing out flyers. Tourists buy fudge. It is truly a world of “live and let live”.
And so I am here again, standing on the breakwater, overlooking the oldest lighthouse on the Cape, a little light at the end of the world. It is late fall, and the sun is beginning to set over the marshland. There is a bite in the air as it sails from the white-capped water, forcing me to zip my sweatshirt up to the top of my neck. I can see the lantern on top of the empty light keeper’s house, with its fixed light exhibited thirty-five feet above mean high water, visible for thirteen nautical miles.
The aching sorrow of the lonely foghorn in the distance reminds me of the one that haunts O’Neill’s morphine-addicted Mary Tyrone, with its soulful attempt to pierce the veil of the past. It is very likely the same low moan that inspired O’Neill when he lived here. But I take comfort in the beacon of light that has, for centuries, guided strangers to its shores. It continues to search the vastness of the dark ocean as it revolves around its nest, each determined turn of the endlessly seeking light beckoning, beckoning, reminding me of the possibilities for the future.
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.