This is the daily pill box that I fill every Sunday evening.
This is the story of how it got that way.
Part XIV of “Years of Living Precariously”, my ongoing column in A&U Magazine, chronicling my experiences during the early years of the AIDS epidemic. This is the text version of the oral “storytelling” event that I posted here in June. As always, thank you for reading.
A New Normal Part XIV of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic by Bruce Ward
One Sunday, about fifteen years ago, I was visiting my then eighty-five-year-old father in Massachusetts. We were sitting at his kitchen table, and each of us was silently filling our 7-day pill organizers, top for A.M., bottom for P.M.
That’s when I realized that, at age forty-six, I had been sorting pills much longer than my eighty-five-year-old father. In fact, the process of sorting pills had become completely normalized.
Over the years, I have continually had to adjust to a “new normal.”
I was diagnosed with what then was called HTLV-111, in 1986. This was ten years before the pharmaceutical treatment we all know now as the protease inhibitor “cocktail” changed the course of the epidemic, in 1996.
My T-cell count, at the time the marker for viral progression, was 217. A normal T-cell count is 500–1500.
I was living in New York City, and had already been working as an AIDS educator when I received my diagnosis in ’86. And it was my nature to take the bull by the horns and take immediate action.
Of course, there was little to be done at that time. I found a prominent doctor in the West Village who had a primarily gay practice, and was now steeped in all things AIDS. There were a few experimental treatments that worked in separating the virus from healthy T cells, but only under the microscope.
One such treatment was only obtainable through an underground AIDS guerrilla group, the PWA (People with AIDS) Coalition. It was called egg lipids. So, in 1986, I took the subway to their makeshift office downtown and purchased a huge jar of this viscous, peanut-butter-like concoction, paid them a lot of money, and brought it to my tiny fifth-floor walkup studio apartment in what was then the seedy area known as Hell’s Kitchen.
What you would do is scoop the substance into individual ice cubes, freeze the tray, and, in the morning, pop out one of the cubes, let it melt, and then spread it on a piece of toast, and eat it.
Although the egg lipids did nothing to increase my T cells, I continued to do my daily routine, and, in fact, went to purchase a second jar at the PWA Coalition. And left it on the subway. I probably cried on the street when I realized it. And never purchased it again. Around the same time that I was diagnosed in ’86 and taking the egg lipids, the first pharmaceutical drug was released into the market: AZT. I was working as an educator for the New York City Health Department AIDS hotline, and TIME Magazine came into our offices to photograph the operators for the breaking story. And so my photo appeared, twice—phone receiver to ear, a head full of curly brown hair—on the inside cover of TIME, and again, larger, accompanying the story, under the headline: “A Ray of Hope in the Fight Against AIDS.” I was the unwitting face of hope.
Two years later, in 1988, I began taking AZT, myself. It signified a new marker for me. Now it was serious. I held that tiny blue and white pill, imprinted with a unicorn—the symbol of Burroughs-Wellcome pharmaceuticals—in my hand. I took a breath and swallowed it. Little did I know that I would still be swallowing antivirals, every day, for the next thirty-six years. And counting.
But then that became the new normal. Until I became anemic. And then a constant plateauing of “new normals” would occur, every year and a half, when I was switched from one antiviral to another.
For the next eight years, I managed to stay just one step ahead of the virus, from AZT to less toxic drugs: ddI, ddC, 3TC, Fuzeon, and then in combinations, that all may have slowed the progression of the virus, but did not stop its inevitable and relentless gobbling up T cells like the PAC-MAN video game.
And then, in 1996, seemingly out of nowhere, came the protease inhibitor cocktail. For the past twenty years, I have been on the same treatment regimen. I’m not one of those who can just take one pill a day. I’m on what’s called “salvage therapy.“ And the double A.M./P.M. pill organizer became the next adjustment, the new “new normal.”
I still take three antiviral meds, twice a day, for a total of ten pills a day. That’s in addition to the meds for all of the other ailments that I’ve experienced as a consequence of living with the virus for so long, like checking off items on a grocery list: two lymphomas and chemos, a heart attack, six stents, both hips replaced, high blood pressure, neuropathy, diabetes, depression, and chronic fatigue. And pills and injections for all of them.
I have estimated that I’ve ingested approximately 100,000 antiviral pills, since that first AZT tablet, thirty-three years ago.
I am basically held together by duct tape and Elmer’s glue. And the miracles of modern medicine.
Some research has stated that the typical long-term survivor is 13.3 years older than our biological age. So I’d like to think that I’m not doing too badly for a 76.6 year old man. (I am, in actuality, 63.)
I’m always adjusting to a new “new normal.” It’s the only way to stay afloat. So, I continue to sort my pills, every Sunday—just as I did with my dad, at that kitchen table, fifteen years ago.
Because we all—all of us—learn to adjust to new normals, throughout our lives. And I want to stick around long enough to see what the next one will look like.
A New Normal: Telling my story at The AIDS Memorial/NYC, June 1, 2021
Friends: This is a 1-minute “teaser” for my 7-minute storytelling gig this past June 1, as part of a collaboration between The Generations Project and the NYC AIDS Memorial.
On June 1 & June 10, ten long-term survivors and allies told our stories of resilience and survival, in a continuing effort bear witness to history.
To watch my full 7-minute story, and the stories of the other 3 participants from June 1, please click on the link below. Their stories will inspire you, no matter your background or experience.
One Sunday, about fifteen years ago, I was visiting my then 85-year-old father in Massachusetts. We were sitting at his kitchen table, and each of us was silently filling our 7-day pill organizers, top for AM, bottom for PM.
“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.
1986: Donna Summer Has Left the Building Part XIII of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic by Bruce Ward
David Reuben’s Everything You Always Wanted to Know About Sex* (*But Were Afraid To Ask) sold 100,000 copies in 1969, and remains one of the best-selling nonfiction books of all time.
I was fourteen years old when I read it, clandestinely scouring the indices of my mother’s psychology books, in search of the word “homosexual.”
Here is an excerpt from the one brief chapter Reuben allows on the matter of homosexuality, his shortest chapter in the book:
The majority of gay guys, when they cruise, dispense with the courtship. They don’t even have time for footsie or love notes on toilet paper. Homosexuality seems to have a compelling urgency about it. A homosexual walks into the men’s washroom and spots another homosexual. One drops to his knees, the other unzips his pants, and a few minutes later, it’s all over. No names, no faces, no emotions. A masturbation machine might do it better.
No names. No faces. No emotions.
Well, that didn’t sound appealing to me at all. I ran the other way, as fast and as far as I could.
Following my HIV diagnosis in 1986, reeling from the stigma and rejection by paramours, the dental clinic, the media, and by society, in general, a new cycle of shame emerged. I turned to the darkness of porn movie houses and gay bookstores, trolling bars until closing, sometimes even on weeknights. I figured that as long as I was turning heads, even in the darkest and dirtiest of atmospheres, as long as I was desired by desirable men, then I must still look good. And if I looked good, then I must still be healthy. As long as hot and healthy-looking men were willing to have sex with me, then I was able to keep panic at bay. There would be plenty of time to be reclusive and celibate—when I was covered in spots and as thin as a toothpick.
With each encounter, I wanted more. The more I had, the more shameful I felt. The more shameful I felt, the more depressed I became. Was this all that would be available to me now? Is this what I was worth? The more depressed I became, the more I thrust myself into that world. I was an addiction cliché. I was Batman in reverse: do-gooding healthcare education worker by day, the Religious Right’s poster child for deviant, diseased homosexual at night.
I followed the “safer sex” guidelines of GMHC and the NYC Health Department, so it wasn’t the sex act itself that was shameful to me. And I was not under the influence of alcohol or drugs. Despite the religious Right’s call to have people like me castrated, I knew I wasn’t purposely putting anyone’s life at risk or adding more risk to my own. But the shame and secrecy enfolded me as tight as a shroud.
So this is what was left of life: nameless, faceless sex in dark, seedy balconies that reeked of desperation. With married men from Connecticut who were also each overflowing with shame and despair and lust. With other newly minted Positive men who didn’t care anymore, who just wanted some human touch, some validation.
Maybe David Reuben was right, after all. I did not deserve to be loved.
Anything, anything to fill the void. The fear in the air was palpable. The desperation. The loneliness. The anxiety. And yet none of us could talk about it with each other. We were all terrified. The only way we knew how to deal with the emptiness was to be with each other in the way in which we were accustomed: in silence and in shame.
And now there was evidence to support what we had been taught all our lives: Sex with another man was so unnatural and so against the laws of nature that it literally could kill you. AIDS was a real downer for liberated sex junkies everywhere.
We all thought this would be over in a few years. We thought if we just fought hard enough and long enough, if we shouted loud enough, if we showed our determin-ation and stamina, surely this would be over.
But the bodies continued to pour down like water. Jim, Michael, Bo, Vito. The AZT was toxic, the doctors were helpless, bodies shrank to ninety pounds.
I remember walking into a hospital room and thinking I was in the wrong room because there was a eighty-year old man in what was supposed to be Michael’s room. And the old man was Michael, who was thirty-six.
And there would so, so many others yet to come.
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 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.”
(Click on link for full piece)
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.
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.
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.
“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.