7 New Yorkers Remember the Early Days of the AIDS Epidemic

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The New York Memorial Quilt on Central Park's Great Lawn, June 25, 1988. Photo: Bettmann/CORBIS

On Sunday HBO premiered The Normal Heart, Ryan Murphy's long-awaited film adaptation of Larry Kramer's landmark 1985 play about gay men in New York fighting back against government indifference to the AIDS epidemic. The film captured an era unfamiliar to young gay people, who came of age amid lifesaving HIV medications, but full of emotional memories for its middle-aged survivors. We reached out to dozens of them — living both with and without HIV — to ask what moments they remember most vividly from those years, which were terrifying and grief-filled but also sometimes exhilarating and empowering as AIDS street activism flourished in the latter half of the '80s.

Harold Levine, 57, marketing consultant, HIV-negative

I remember the spring of 1981, standing in Cahoots, the gay bar on Columbus and 80th Street. It was the middle of the day; we had probably just had brunch. There was a restaurant in back with big rattan peacock chairs, and the sun was streaming in the windows. I was talking with a group of guys from Boston, and one of them said that a friend of his had just died from "that new gay cancer." None of us had heard of it, and we asked for more details. "He got sick, went to the hospital, and was dead in a few weeks," we were told. At that time we were always hearing of gay men's diseases, but they were almost always STDs. We just didn't know how to get our heads around "gay cancer." It was a few months before I heard about a second case, then the floodgates opened and it was all we could talk about.

John Blair, age withheld, club promoter, HIV-negative

I owned a gay gym, The Body Center, on Sixth Avenue from 1978 to 1985. In early 1981, one of our young trainers, very good-looking with a beautiful body, got sick and went back to Pennsylvania to his family. Four months later, we got a call from his sister saying he was very sick and the doctors did not think he would last the week. We jumped into our car and raced to his bedside. I cannot tell you the horror I felt as I walked into his hospital room and saw this old man in bed with tubes in his arms and nose. He was skin and bones and could barely talk. To see this once-young, healthy boy deteriorate so fast was devastating. Unfortunately, it was a picture and a situation that would play out over and over for the next decade. The Normal Heart is our legacy to this generation. What you see on that screen is true and very painful to watch, but it's also important to remember all the beautiful people that were taken from us in such a horrible fashion.

Tim Miller, 55, performance artist, HIV-negative

It was the summer of 1981 — that summer of the first New York Times story on the yet-unnamed AIDS — and I was 22 and had just broken up with my boyfriend, John Bernd, with whom I had done a bunch of performances in the East Village. A couple of months after we broke up, John was at the dentist and under the hygienist's vigorous scraping, his gums started to bleed and wouldn't stop. The hygienist applied gauze, but nothing seemed to stanch the flow. The dentist became quite perplexed and admitted John to Bellevue for tests.

"It seems my blood has lost the ability to clot," John told me over the phone from the hospital. "They want to check me for all kinds of things. They're testing my blood for platelets, whatever they are."

"Well, I'm sure it's no big deal," I lied, vaguely aware of some disturbing rumors that had been afoot about some gay men who were sick. "I'll come by later today and visit."

Surely this "gay cancer" could only affect older West Village mustached disco queens who went to the baths every day, not youthful smooth-faced East Village anarchist performance artists in skinny neckties.

I was wrong about that.

Stephen Pevner, 54, film and theater producer, HIV-negative

I distinctly remember reading a New York Times article about a rapidly spreading cancer affecting gay men in New York, San Francisco, and Los Angeles on a train ride up to New York from Baltimore, my hometown. It was July 5, 1981, and I was moving to New York to live with my college roommate who had graduated a year earlier. I remember the date because I had secured a job interview to gopher at a talent agency and they were only available to meet after the July 4th weekend.

At the time, there was a huge herpes scare, so my friends and I would hang on to any news about STDs. The 350-square-foot efficiency apartment I was going to share was located on far West 71st Street, where three of the six studio apartments were occupied by African-Americans. One gentleman, James Johnson, worked in the publicity department at  Paramount Pictures and would invite me to movie screenings. By the end of the summer, he and the other two black guys in the building were dead. I would run into each of them frequently enough, but I never saw any of them deteriorate. It was that fast. So fast that the landlord was having trouble turning over the rent-stabilized apartments, so I was able to secure one for another college buddy. A couple of years later, the Times obits section was commonly referred to as the Gay Sports Page, because we would count the number of apparent AIDS-related deaths before checking the other news.

John T., 55, accountant, HIV-positive

On July 4, 1981, a beautiful summer day, we gathered at my friend Carol’s studio apartment in Kips Bay — Carol, Alfred, and myself — before we all went to one of the beaches reachable via public transportation. This was our first summer in New York after college. We had gone to Coney Island on Memorial Day, and vowed to go to the next beach eastward every weekend that summer, hoping to make it to Montauk by Labor Day. I think we were going to Brighton or Jones Beach that weekend.

There was a day-old copy of the New York Times at Carol’s. One of us noticed a small article inside the front section with the headline “Rare Cancer Seen in 41 Homosexuals.” We discussed this story as we headed for sun and sand. The news felt simultaneously distant and ominous. We were just starting to venture into the gay scene; Alfred and I, who were best friends, frequented Julius, The Ninth Circle, and Uncle Charlie's South, but were only beginning to meet other gay men. The article said that the victims had "multiple and frequent sexual encounters with different partners, as many as ten sexual encounters each night up to four times a week." That wasn't us.

Alfred died in 1989, the same year I tested positive myself. I got a call about him from our friend Andrew while I was in a department store, with Tiananmen Square tanks on TV. We were all a few years younger than the generation that was mowed down by the initial wave of infections, so I lost relatively few people compared to men older than I.

Sean Strub, 56, diagnosed with HIV in 1985, founder POZ magazine and The Sero Project

One Saturday in May of 1983 I was having breakfast at a diner in New Hope, Pennsylvania, where I had a weekend place, with Rupert Smith and his boyfriend, Patrick McAllister. Rupert was an artist who worked for Andy Warhol as a screen printer.

Over scrambled eggs, Rupert casually said, “I guess you’ve heard about Robert,” referring to someone I was fond of and had dated.

I felt a chill. “No, what about Robert?” I asked.

“I heard he’s got it," was all Rupert needed to say.

That led us to talk about Joe McDonald, a prominent model who had died a few weeks before. Patrick said that he was worried about a ménage à trois he and Rupert had had with someone who had dated Joe. My mind was stuck on the news about Robert, worrying about him and myself, thinking back to all the times he and I had had condomless sex.

Then my attention fixed on a small oblong purple spot near Patrick’s left earlobe. It was about as wide as the tip of a pencil eraser and about the same color. I had seen guys on the street and at AIDS benefits, but their lesions were bigger and darker than Patrick’s. Did he know it was there? Should I say something? There was no etiquette in the situation.

Just then Rupert said, “But Patrick and I got checked out by our doctor, and we’re okay.”

I was flustered for a moment, then heard myself blurt out, “Did the doctor see that spot?” I pointed at Patrick’s ear.

Rupert took a peek, and his face changed. “I don’t think that was there a couple of days ago,” he said. Patrick, who could be prickly, said belligerently, “What? Now you think I have AIDS? Thanks a lot!”

He left the table to look in the bathroom mirror and returned with an ashen face. I felt guilty, like it was my fault for having noticed the spot.

(This has been adapted from Strub's memoir, Body Counts.)

Perry Halkitis, 51, researcher, author of The AIDS Generation

I grew up in NYC but all through high school I was in the closet. I was kid from Queens with a mullet, a dress shirt unbuttoned to my abs, and Jordache jeans. At 18, after my first semester at Columbia, I ventured into my first gay bar — The Eagle. I loved what I saw but no one seemed to notice me. A week later I returned there with Levi's and a tight white tee, a crew cut, and three days of razor stubble. My fortunes quickly changed.

Flash forward to 1988. My blood was drawn by my physician, labeled in collection tubes, and placed in a brown paper bag. It was then my responsibility to deliver the specimens to the Health Department lab on First Avenue. I placed the bag though a metal collection chute and waited two weeks for the results.

I was at work when the doctor called to tell me, over the phone, that I'd tested positive. Time stood still. I felt myself outside my body, and yet the world was spinning. I didn't think the end was near, just soon to come. That anxiety and sense of being outside myself exists to this day every time I see my doctor. I'm always expecting to hear something bad and that my time is up.

I called my partner at the time, Robert Massa. It had been his love that had encouraged me to test. When I got home, we went about our business. I had suspected that I was positive. One of the first men I had sex with had died in 1985. So while it was shocking, it was not unexpected. The next day I made a doctor's appointment. I remember thinking how futile it was to even go see a doctor, but I guess deep down inside I knew that I should be connected to care. I've had a doctor's appointment every three months since 1988.

Editor's Note: AIDS deaths in New York City peaked in 1994, by which point almost 50,000 had died. Late the following year, new drugs called protease inhibitors emerged, becoming part of a drug cocktail that sent AIDS mortalities plunging. According to the New York State Health department, 3,400 New Yorkers were diagnosed with HIV in 2012, compared to 15,000 in 1993.