Stories of Devastation

'If I didn't play any song that reminded anyone of AIDS, there would be no music to be played.'

DJing at Eagle Nest
Story by Jimmy Perigny

Here is a story I would like to share on World AIDS Day:

When I was hired as Friday Resident DJ at Eagle Nest NYC in ’94, I was forbidden to play any disco or Saint music by the owner, Jack Modica. One day, I sneaked the Main Event B Streisand Extended version on around midnight.

Jack ran into the booth and ripped the record off the turntable and proclaimed, “You are not not to play any disco, because it reminds people of the sad deaths from AIDS.”

I responded, “If I didn’t play any song that reminded anyone of AIDS, there would be no music to be played.”

He thought about it and later agreed. So, I struck a deal to play only one song after the bar stopped serving … the last song. Patrons mostly stayed to hear my last song, which was a tribute to the Saint and our friends we danced with that passed on.

I remember the quotes distinctly to this day.

'I got here for Lawrence. He wanted me to thrive, not just survive ... I didn’t get here by forgetting. I came here by way of remembering, too.'
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Lawrence Buckley, 1957 -1995
Story & Recording by Chris Creegan

In July 1995, my partner of 10 years, Lawrence, left me. He’d been leaving for a while. First his body and then, in the last few months, his mind. Not a sudden parting, more an ebbing away. Like a lingering tide, occasionally he would threaten to come back. But the pull was unstoppable. He had to go.

Every year, I take a brief sojourn from the routine of life to relive his last weekend. A little melancholy, but comforting too, perhaps because I’ve been going for 23 years. Some years it approaches like a hazard warning light. Others it seems to catch me unawares. But it always comes. And I always go.

It can’t be said often enough that grief is not something you get over or move on from. The intensity doesn’t change, only the frequency. It can be random, sparked off by the mention of a book, a place or a piece of music. But there’s nothing random about this weekend. It comes round again. Right on time.

A friend in the throes of very new grief asked me recently how I got from Lawrence’s death to the joyousness of my marriage to Allan last year. Almost an exam question, that. Hard to answer, no matter how well you’ve revised. My stumbling response was that I got here for Lawrence. He wanted me to thrive, not just survive.

But as I came away, I thought of something else. I didn’t get here by forgetting. I came here by way of remembering, too.

'Does it really matter what disease you contracted or what you died of OR how pure your heart is and how deep you loved? They deserve respect and honor and I give them that till we meet again my angels. Love Big and Love Deep.'
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An Entire Family, Gone
Story & Recording by Cynthia Piña

My mother, father, sister, brother and uncle all succumbed to complications from HIV/AIDS.  My entire immediate family, gone!  By the age of eight, I said goodbye to my mother and then my father and so on.  But I’m here!  I’m here to say they matter, they were wonderful beings.  They will ALWAYS be remembered for who they were, NOT by what they died from.

They had names: my gorgeous music aficionado mother, Innocencia Caban, “Tita”; my artistic and strikingly handsome father, Amilcar Piña, “Al”; my beam of light baby sister, Cristina Marie Piña; my nautical ultra charismatic brother, Juan Pablo Barroso, “Pipo”; and my fun loving uncle, Angel Piña.

We all have a unique story and they do as well, and I wish I could share them with you – but for now just know this … they all left this earth way too soon and left a hole forever in my heart.

Does it really matter what disease you contracted or what you died of?  Or does it matter how pure your heart is and how deep you loved?  They deserve respect and honor and I give them that ’til we meet again, my angels. Love Big and Love Deep.

By Cynthia Piña

'I felt like I was in a horrible car accident where the car rolls over and over and all you hear is the sound of metal against metal, then silence .... Physically, you have survived, not even a scratch, but the world as you see it is no longer the same.'
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Tested
Story & Recording by River Huston

 

I’m River Huston and this is my HIV story, which I call “Tested.” 

Claude taught people how to sing. He was charming and sweet. We started to hang out. We did not have sex. But we did make out a lot. 

One day he asked me if I would be willing to go with him to take an HIV test. It was in a flirty way, like if we take this step together, we would be making some kind of weird commitment. 

I didn’t know anything about HIV, but I couldn’t possibly have it. At the time, I’d been clean and sober five years. I could run eight miles without any effort. I did yoga every day and ate brown rice. I knew what AIDS looked like from the guys in the Village. I saw the emaciated men, covered in sores, walking with canes and toting oxygen tanks. I knew people from Narcotics Anonymous who had had AIDS, but it was a secret thing. No one talked about it. I had never heard of a woman who had AIDS.

I said yes. It was May 1990. We went to the Department of Health and had our blood drawn. We joked and were relaxed. They told us to come back for our test results in ten days. 

I sent up a few prayers to cover my bases. I had struggled with God most my life. I had grown up agnostic. I made up a God that I called Harry when I was a child. He was useful for when I was in trouble. I decided there was no God when I started using drugs at 12. It was simpler that way.

Later, in recovery programs, they talked about a higher power. I never understood it. It was silly to believe with such abandon in what seemed to be a fairy tale. But I needed something to hold onto. I made a decision to just have faith. I didn’t believe in anything specific, but I had faith there was something.

The 10 days preceding our test results were filled with a simple prayer, “Please do not let this test be positive.” I hummed it silently like a mantra.  And as Claude and I headed up to Harlem on the A train to the Department of Health, I hummed, “Please do not let this test be positive.” 

We were excited and nervous. I was ready to go further with Claude than with anyone else I had met. He seemed real. He was not an addict, had a loving family. He was normal. I was almost normal, or I could appear normal. I worked, I went to college, tried to learn social skills, participate in society.

I had spent most my life living on the edges of civilization, not exactly legal, but not hurting anyone. I grew weed in the ’70s in Humboldt County, I lived in a van, played music in the streets. I roamed the country, selling my body along the way since I was 15. I made the leap into the world of conformity when I got sober at 25. I often felt like an interloper in the so-called real world.

We took our seats in the clinic. The testing had been anonymous. I fingered the piece of paper with my number on it as if it was a winning lottery ticket. We were the only ones in the waiting room. 

They called his number first. I waved, “Bye, honey.” Then it was my turn, and I followed the doctor into a small room. 

She smiled at me, but looked tense, almost scared. I sat down. She was sitting across from me staring at the folder. Finally, she looked at me and said, “Your test came back positive.”

I couldn’t quite grasp this.

“Is this good?”  Knowing it wasn’t.

She said “no” and explained to me that I was HIV-positive.

Then my denial kicked in. My voice trembled when I said, “They make mistakes, right? We should take another test. I’m sure this is mistake.”

She explained they had done both the Western Blot and the Eliza test. “You have this virus in your bloodstream.”

I felt like I was in a horrible car accident where the car rolls over and over and all you hear is the sound of metal against metal, then silence. And somehow, you get out of the car.  Physically, you have survived, not even a scratch, but the world as you see it is no longer the same. I couldn’t hear a word she was saying. I stared out the window at broken glass that littered the asphalt beneath an empty swing set. 

“Why did you ever think it would get better?  You don’t deserve anything.  You’re a piece of shit, and you’ll always be a piece of shit. Damaged goods, garbage, a pariah.”

These thoughts paraded along with, “You will never have children, you’re going to die alone, diseased and untouchable. I fucking hate you, you stupid piece of shit.” 

The doctor broke through my barrage of self-loathing when she said, “Listen, according to everything you told me in the last visit, you have a good few years left.” 

I started to cry. I cried the way you do when you can’t stop. After a few minutes, I looked up. She handed me a box of tissue with a sad face. I felt dizzy and sick. The walls seemed to close in on me. I couldn’t stand to be in that room another second. 

I pulled on my sunglasses and I walked out without another word. Walked right past Claude. I couldn’t even look at him, I felt so ashamed and dirty. I headed for the door, went down the stairs to the street, and started to run. 

I cut through the kids on the sidewalk that were getting out of school and the moms with their baby carriages. I just wanted to get to the train. I wanted to go home, I wanted to hide under the covers. I wanted to forget this day ever happened. I finally reached the train as it pulled into the station. I got on and the doors slid shut. I stared straight ahead, shaking, numb, nauseous. I felt someone slide next to me. I turned my head, and it was Claude. 

He had this look on his face. The fucking look I would come to dread for the next 30 years, the look of pity. He was out of breath from running.

He leaned over and said, “River, it’s going to be okay.” 

I wanted to scream. “It’s not okay, and it will never be okay, and okay is over.”

But I didn’t say anything. I stared straight ahead. The train stopped and went, and stopped and went. The wall I started to build around me was impenetrable. Claude lapsed into silence. We exited together at Union Square. We climbed the stairs to the street.

With a weak smile, he said, “If you need anything …”

He gave me a quick, awkward hug. He went his way, and I went mine. End of my relationship with Claude, beginning of my relationship with HIV. 

At 61, HIV has been the only constant in my life. I’ve done amazing things, wrote books, painted paintings, traveled the world, did a one-woman show. I also spent many years sick, in beds, in hospitals, poked and prodded, alone, depressed, in enormous physical and psychological pain.

I tried so hard to not define myself by HIV, even if the world continues to define me as diseased. I have walked this journey alone with as much kindness and love I can muster for myself. But mostly I’m just waiting to die.

'She was dying of a terminal illness, already a year into her death march.'
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Christine Bessey, 1927-1994
Story & Recording by Diana Keough

It wasn’t your usual family gathering. My mom had summoned all six of her children home, so she could go from room to room, assigning us her possessions. She was dying of a terminal illness, already a year into her death march. One down, three to go, it turned out.

She told one of my brothers, “I think this will look nice in your front hall,” her hand resting on a chest of drawers.

And so it went, on and on. A macabre ritual demanded by our well-organized matriarch, able to square off against Death in the realm of the mundane, but unable to face the broken and stressed out relationships looking right back at her.

“And I don’t want any fighting about any of this after I’m gone,” she said. This was my mom at her finest: in control of both her possessions and our fragile feelings. We were her obedient children once more, as well as contestants in her game show of random kindness.

I didn’t want her stuff, but then again, I did. For that was the yardstick of her love. She gave to her favorites, her favorite things, with no extra charge for her tangled web of strings attached. I was a little girl, again, and I hated it. I just wanted to hear her say how she loved me. But a family heirloom would have to suffice because it was the only love she knew how to give. When all of her earthly possessions were dispensed, she told us there was one more thing.

“I want you all to know,” she began slowly. “That when I feel the end of my life is near, and while I’m still able, I’m going to take my own life.”

She sat looking at us, with her hands folded tightly and placed demurely off to the side of her lap. Her spine was rigid and straight against the back of the chair. Her chin was raised high, her legs crossed at the ankles.

“My mother knew about two affairs but thought they were with women.  In spite of that, she stayed with him as long as she did because she was a “good Christian woman,” and was afraid of what other people would think. “It takes a lifetime to build a reputation and a second to destroy,” she often told us.  Fear killed them both.

One of my favorite memories of my dad — and I have many — is making Christmas cookies.  I have so many great memories of my mom but we had a difficult relationship.  Before she died, we healed a lot of our relationship and I was able to forgive her.

My dad always said he thought my mom looked like Grace Kelly and, I have to admit, I sort of agree with him.  She was beautiful, stylish and really smart.  In a different time, I think she would’ve been a successful entrepreneur.

My dad passed away in July, 1990, in an AIDS hospice in Cincinnati with me and three of my siblings by his side.

My mom passed away in a Catholic hospice in Milwaukee, her door plastered with bright red warning signs about her disease, with me and my oldest sister holding her hands.

They were both only 67 with a lot more life to live.  They never had a chance to watch me grow into the woman I’ve become.  My four sons never had a chance to get to know them or spend time with them, which is a damn shame. Their deaths — the deaths of anyone from AIDS is such a waster and so damn senseless.”

The physical pain she had feared so much, was controlled with medication and never came close to the emotional agony she twisted in prior to her terminal diagnosis.

“Life is such a precious gift from God,” she told me. “Don’t waste your life or any of the time that God gives to you. Promise me that, okay?”

We battled for so long, both of us feeling completely justified, and so full of pride and self-righteousness. The deadline of her death launched her on a soul trip and in taking me along, we were able to call a truce, leaving me to mourn what could have been, not the torment of what was.

I wonder if we would have been able to let go of our anger without the crescendo of her ticking body clock. All I know is what I saw: In the hospice, as she lay gasping for breath, holding my hand, looking right into my eyes, she asked, “This is the sickest I’ve been isn’t it?” I held her hand and thanked her for being the best mom she knew how to be. I thanked her for so many long talks and hugs and for not killing herself. She smiled and squeezed my hand back with all her might as she struggled to say, “I would’ve missed out on so much.”

Me too, mom. Me too.

'In 1985, SC-B1 was the first infant to die from AIDS in New York City. His or her name is unknown.'

A Grave  on Hart Island
Story by
The AIDS Memorial and Irwin M. Rappaport
Photo by Melina Hunt, © 1993

A gravestone marked “SC-B1 1985” on Hart Island, off the coast of the Bronx in New York, is referred to by some as the “Tomb of the Unknown Child.”

“SC” stands for Special Child and “B1” stands for Baby number 1.

In 1985, SC-B1 was the first infant to die from AIDS in New York City. His or her name is unknown.

The Special Child was buried along with 16 other people who died from AIDS. They were the first group of AIDS burials on Hart Island.

At the time, little was known about the causes of AIDS, or how it could be spread, so these early AIDS burials were done differently. Until 2021, burials here were done by the Department of Corrections. Its officers supervised inmates from Rikers Island who dug the graves.

The officers and inmates were afraid of catching the disease from the dead bodies, so they wore protective gear that they threw out after each burial. Strangely, but poetically perhaps in retrospect, they buried these first 17 AIDS victims in individual graves, not in the mass-grave trenches used for the rest of the island’s dead. They were buried as deep in the ground as the backhoe would go, on the southern tip of the island.

Unclaimed bodies and the bodies of the indigent in New York City are sent here. AIDS killed IV drug users and their babies who contracted the disease in utero. It killed poor people whose families and friends couldn’t afford a cemetery plot elsewhere. And it killed gay men and kids estranged by their families or who had run away from home. Many of their parents wanted nothing to do with a child who had AIDS.

Many funeral homes refused to handle bodies of those who died of AIDS, following a 1983 advisory from the New York State Funeral Directors Association not to embalm AIDS fatalities.

These are many of the AIDS deaths on Hart Island.  Eventually, it became clear that the bodies of those who died of AIDS presented no risk of contagion, so those bodies (including babies) were buried on Hart Island in mass graves like the rest, crates
stacked on top of each other, covered in dirt by bulldozers.

Over one million people are interred on Hart Island. It is estimated that over one-third of the dead are infants and stillborn babies.

Hart Island has been called the largest tax-funded cemetery in the world. Burials on the island began shortly after the American Civil War. In 1869, the city then began using it as a public cemetery for unclaimed bodies and the indigent dead. Funeral ceremonies have not been conducted at the burial site since the 1950s.

The Hart Island Project is a nonprofit founded by artist Melinda Hunt to improve access to the island and information on its burials so that more of the bodies can be identified. The Hart Island Project AIDS Initiative now helps people to try and identify those buried on Hart Island who died of AIDS.

'My grandmother was a woman beyond her years.'
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Carlota Vazquez de Gonzalez, 1890-1984
Story & Recording by Miguel Gonzalez

My grandmother, Carlota Vazquez de Gonzalez was born June 12, 1890. She was the youngest female of 12 siblings and was named after Queen Carlota of Mexico during the reign of Maximilian I.

She was a strong woman who faced adversity all her life. She was small in stature but commanded a room. She gave birth to her six children in her home with the help from my grandfather. She lost all of her children through illness and violence, including my grandfather. Only my father survived.

My grandmother was a woman beyond her years. She loved a cigarette and her daily ‘vitamin shot’ (whiskey) in the morning. She would tell me stories about the family, who we were and where we came from. She was very proud of her roots as I am but she was a realist and she knew that life was never easy. She was a woman of strong convictions and believed that faith/religion was personal and not to be shared with others.

My grandmother contracted AIDS through a blood transfusion during hip surgery. After her surgery, she became ill and we could never figure out why. Her doctors at the time would dismiss her illnesses due to her age. It was not until one visit that the nurse turned back her blanket that I noticed the Kaposi’s sarcoma lesions on her legs. I recognized them, because I had seen the exact same lesions on my friends fighting this horrible disease. My grandmother died on Thursday, July 5, 1984. I was 20 years old.

My grandmother was my strength and my protector. She knew about me before I knew what gay was. She told me that she knew I was never going to marry a woman. All she wanted was a child so that the family line would continue. I miss her more than life itself. The wound is still fresh for me. Maybe one day, I can stop crying for her.

'I am here and I am present and I am fully awake. And I love my life and I am married to the greatest human on the planet and I have spirits around me that bathe me in light.'

Spared, Blessed and Fully Awake
Story by Alexandra Billings

When it happened it was not a surprise. It was not out of left field and it was not unexpected. When it happened it was happening to everyone. Everyone I knew. Everyone around me. A black curtain had been thrown over the heads of us all and smothered us all in a cloud of decaying flesh and bloodied foot prints.

And the stench of the AIDS virus infiltrated the inside of my being and it is still potent. It is still thriving. Because I still have AIDS.

And I have outlived most everyone I knew, and we were in our 20s and we were in our 30s and we were still young and still having sex and still doing drugs and still running and jumping and skipping and singing and being queer. And yet one by one, we were being ticked off like ducks at a carnival. In the heart. In the brain. In the limbs.

And for some unknown reason . . . some of us were spared. And it is daily. And it is not gone. And it is getting worse. And it is still potent and it is still fresh. And it still lives in me and one day it will kill me. I know that.

But I am here and I am present and I am fully awake. And I love my life and I am married to the greatest human on the planet and I have spirits around me that bathe me in light.

And so I am truly blessed. Not that I have this disease, but that I learn from it. I remember very well when it happened. Because it seems like it happened yesterday.

'Let’s celebrate and enjoy Pride, but let’s also remember why we have Pride and let’s certainly never forget those who lost the battle.'
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Gay Pride 1993
Story & Recording by Scott Fowler

TBT … NYC GAY PRIDE 1993.  We were so young and innocent.  Ok, we were young!

I look at this photo, and so many emotions come up for me.  The obvious:  We had fun!  Yes, that’s my 26-year-old self in a latex wrestling outfit borrowed from Michael Arnold and holding a beer — which is an odd sight to see, considering I’m now sober over 15 years.

The not so obvious:  We were fighting and marching for our lives and the lives we were losing at alarming rates right in front of our eyes at the time.

It was the best of times, the worst of times, and certainly scary times.  We were young, hopeful, driven — but certainly not carefree.

We marched, fought, memorialized, fundraised and lived “full-out with feeling” in the hopes of finding a cure, equal rights, awareness and a better life for all of us to live.

Let’s celebrate and enjoy Pride, but let’s also remember why we have Pride and let’s certainly never forget those who lost the battle.

See and remember them @theaidsmemorial.