Stories of Loss
Steven Arnold, May 18, 1943 – August 6, 1994
Recording by Ellen Burstyn
Story by Irwin M. Rappaport and Ellen Burstyn
Photo courtesy of The Steven Arnold Museum and Archives
My late friend Steven Arnold was a visionary surrealist filmmaker, artist, set and costume designer, jewelry designer and overall counter-culturist whose works can be seen in the collections of the Whitney Museum of Art, the Museum of Modern Art, the Cinematheque Française in Paris, and the San Francisco Museum of Modern Art, among others.
I’m Ellen Burstyn, and I met Steven, oh, somewhere in the late ‘70s, yeah I would say ‘78. He was brought to my home where I was doing a production of Midsummer Night’s Dream outside in my garden. He was brought to my home by a close friend of both of ours, and he videotaped the production.
And we became friends immediately. Vast, deep friends. He really felt more like a brother than a friend.
Steven’s film Messages, Messages premiered in San Francisco in 1969 at the Palace Theater in North Beach, where he later was hired to program called Nocturnal Dream Shows, a first-in-the-nation series of midnight movies.
The avant-garde drag troupe “The Cockettes” got their big break there and later launched legendary gay artists Divine and Sylvester. Messages Messages was presented at the Cannes Film Festival’s prestigious Director’s Fortnight in 1970.
At the Whitney Museum screening of his second film Luminous Procuress, Steven met iconic surrealist artist Salvador Dali and he soon became his friend and protégé. According to Vishnu Dass, director of the Steven Arnold Museum and Archive, Dali inspired Steven to “translate his dreams, visions and fantasies into art.”
The result was Steven’s trademark series of tableaux-vivant, which were produced in his Los Angeles studio called Zanzibar which became a hangout for visual artists, musicians, designers, drag queens, hustlers and others outside the cultural mainstream. And me, by the way.
These theatrically staged black-and-white photographs seemingly sprung from his sub-conscious mind. They are elaborately constructed — often campy — homages to imagined queer gods and goddesses. Spectacular, playful dreamworlds filled with imagery of non-binary sexuality, mythology, inter-connected spirituality, and divinity.
Perhaps not surprising for a man whose childhood bedroom was decorated in the style of Louis XIV, who as a teenager smoked opium and marijuana and drank champagne and cough syrup, and who lived for months on the Spanish island of Formentera, where he and friends took LSD daily, lived in caves and experimented with painting and costumes.
A documentary film about Steven and his art, Steven Arnold: Heavenly Bodies, was released in 2019, narrated by Angelica Huston.
Steven was diagnosed with AIDS in 1988, and passed away in 1994.
When he died, he was laid out in a friend’s home and decorated with flowers. He had a gardenia between his big toe and his next toe. He had beautiful artifacts around him.
He was like that for three days, as so many of his friends came and sat with him. When the men came to take him away for burial and introduced themselves, one of them was named Angel.
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.
Life & Death in the AIDS Ward
Story & Recording by Ed Wolf
I remember a patient on the AIDS unit whose mother arrived too late. She was traveling by bus, because she was afraid of planes. But he died before she could get to San Francisco.
We put a sign on his door, “See Nurse Before Entering!” When she arrived, a doctor took her into the room and sat with her and the body. We could hear her crying.
Afterwards, she walked down to the visitor’s lounge. Ricky, homeless and only 18, was on the couch watching television. He was the youngest patient with AIDS I’d ever met.
The mom sat down next to him and they began to talk. After a few hours, she left — but she returned the next day, and the day after that.
By the end of the week, funds had been raised for two airline tickets. Ricky had assured her that flying was safe, and she was taking him home.
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.
Jim Brumbaugh, 1948-1991
Story & Recording by Ellen Matzer
One of the bravest men and patients I remember. They were all brave, but Jim Brumbaugh (1948-1991) faced this illness with a calm and realism we didn’t see often.
He was in and out of the Hospital many times. He had a multitude of opportunistic infections throughout the year he was ill. He had a wonderfully supportive partner and family that was also rare back then.
I remember one of the times, Jim knew he was close to the end. I went into see him. He was sorting out imperial topaz gem stones. I had never heard of that stone before and he explained to me that it was one of the most beautiful topaz stones there was. He was sorting out the stones to give them to all his nieces after he passed.
I remember sitting with this wasted yet still handsome man, looking at each stone and talking to his partner about which family member should get which stone. It was as if Jim was having a normal conversation about anything. I remember thinking, how can he do this so matter of factly? His partner had also known that my 2-year-old son liked elephants. The next day, he came in with a bandana that had elephants on it. I still have it.
Jim, I miss our talks. I miss you, how brave you faced every speed bump, every obstacle. There were so many we lost back then. I try to remember everyone’s face, something special about them. Most of them, I do.
Valery Hughes and I wrote the book Nurses on the Inside, Stories of the HIV/AIDS epidemic in NYC to remember this generation lost. To warn against it happening again.
We must know the history of the awful epidemic. There are too many people that don’t remember, were too young or not even born yet. It was a holocaust. We must honor all these brave men and women. We must never forget they were here.
Bryan Glen Henderson, 1959 – 1991
Story & Recording by Linda Henderson
In memory of Bryan Glen Henderson (September 7, 1959 – July 17, 1991).
There is a deep longing
Residing in my belly
Rising up in the hours of darkness
Tears swelling, seeking out
Arms of safety
To be held
In the love once known
The death of a brother is like no other death. It is a unique event that can only be likened to an ending of the world.
This year will mark 27 years since losing my brother to AIDS. The memory of this day is just as vivid and present as it was 27 years ago when I witnessed that final breath of life. A final breath that provided relief for a body ravaged with the symptoms of a disease that knew no boundaries. It stole life and dignity both in what it did to the physical body and its ability to tear at the heart of the human condition.
Its reputation as the gay disease portrayed by the Grim Reaper sowed fear into the social imaginary. The suffering inflicted by this disease was not enough: society felt it their right to judge and condemn those inflicted as having their just punishment for their sinful ways. The discrimination and judgement was harsh. My brother knew this all too well. I bore witness to the hatred he endured. But he was bigger than those who judged displaying love and kindness in return. This was my brother — a beautiful man — a beautiful soul.
Forever I will feel your absence in my life.
Forever I long to be held one last time in your arms. Forever I treasure your memory.
Forever a love for a brother that has me engaged in the melancholic work of mourning for a brother that is never done, can never be done, never finished.
Robert Michael Painter, 1949-1983
Story & Recording by Ryan Michael Painter
I never knew my father in a way that makes writing about him easy. He is enigmatic, a man of masks. An ever changing follower of fashion. Mythical, Mormon, gay, incongruent. Contradictory. A gentle someone who cried the only time he spanked me.
Robert Michael Painter — Mike to his friends and Dad to me — was the first person in Utah to be diagnosed with AIDS. It was the summer of ‘83. I had just turned seven years old.
My parents divorced before I knew they were together. Mom didn’t know he was gay; he didn’t say. Still, she kept him close to us. She was afraid that someday all the world’s cruel nouns and adjectives would convince me to push him away.
Dad and I watched Dallas in the warm glow of his den. He set an alarm so I would never miss The Smurfs on Saturday mornings. He drank Diet Dr. Pepper in glass bottles. Used plastic milk containers filled with water as weights. He tanned in the bathroom. Listened to the Village People’s “In the Navy” as he combed my hair.
He knew people with personality. He went to a party dressed in a diaper; his boyfriend Bryan was dressed as a nurse. I smelled coffee for the first time in the basement apartment of one of his friends. Watched, but didn’t understand, Star Trek: The Motion Picture with him and someone forgotten on a date.
We appeared in a print and television Father’s Day ad campaign for a local mall. I saw the commercial once. He talked about land he had purchased in Montana. Said we’d go there someday. He left out that it was part of a polygamy compound.
I loved riding in his Mercades convertible with the top down and the sun on my face.
I’ve completely forgotten the sound of his voice.
He died on September 19, 1983, but his grass marker only reads “Robert Michael Painter 1949-1983.” His parents feared that if they included exact dates, someone would know that it wasn’t just pneumonia that killed him. I was still seven years old.
I remember missing him more than I remember him. So I wrote a book for him, Mom, and me called @theunexpectedson. It’s unbelievable and completely true. There’s just not enough of him in it.
Dad, I love you.
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.
Jaime Jesus Jimenez, 1963-1995
Story & Recording by Guy Berube
Jaime Jesus Jimenez (May 18, 1963 – October 27, 1995). That’s us in 1990, Jaime in front, in Little Rickie’s photo-booth, madly in love.
I had just ‘landed’ in New York in 1989 — illegally — and got a gig as bouncer and bar back at The Bar, an infamous queer hangout in the East Village where some scenes of “Cruising” where shot with Al Pacino. I met Jaime on my first shift. It was instant, our connection.
Jamie was the first to make a move on me. That fuckin smile did it.
“Hey Babe, when do you get off work?” he says.
“Wait in line, Buttercup,” I replied.
That ride lasted five crazy years. Jaime was the only man I ever fell in love with. He was insanely beautiful, inside and out. The stories are endless but one that I cannot erase is bathing Jamie at his weakest in the last stages of his illness. That very moment, looking at each other, knowing this was it. I felt something shift in my chest. It was my heart literally aching.
Fuck I miss him.
Tom Rolfing, 1949-1990
Story & Recording by Ralph Bruneau
Dear Tom Rolfing,
It has been such a long time since you’ve been gone. I honor your life, death and the years we spent together. You were my first real love and biggest loss. I am forever in your debt. So much of who I have become is due to our time together.
We were: Summers on Fire Island, cocaine and Scotch, Upper West Side and West Village, sexy boys, quaaludes, Cartier roll rings, Studio 54, ordering in Chinese food, Levis and white tees.
Then AIDS came and we were: Kaposi’s sarcoma, doctors and hospitals, ACT UP, funerals, terror, wheelchairs and hospital beds — and then you were gone.
I want you to know that I’m still here and fighting. I am well and able to love in a way I couldn’t have imagined back then. You are still in my thoughts and in my heart. I think, I hope, that you would be proud of me.
I remember you. I remember us. I love you.
Demian Acquavella, 1958-1990
Story & Recording by Seán Curran
My name is Seán Curran, and back in the 1980s, my last best friend Demian Acquavella and I were dancers in the Bill T. Jones/Arnie Zane dance company. One day out on the road, we were rehearsing in a gymnasium, and at the end of that long rehearsal, Demian and I decided to go and take showers before the van came to pick us up to take us out for dinner.
We were in the shower together, and Demian very nonchalantly picked up his left arm and pointed to a big splotch on his inner bicep and said, “Hey, Seán, what do you think this is?”
I knew exactly what it was – it was a Kaposi’s sarcoma lesion. But I took a deep breath and said, “Wow, Demian, I don’t know, it looks like a bruise … Did somebody grab your arm or were you doing a duet with somebody?”
We got dressed and went out to wait for the van, but I said, “I think I forgot something.”
I ran back into the gym, I found a pay phone and I called Arnie Zane back in New York, collect, and I told Arnie that Demian had just shown me his first KS lesion. Arnie sprung into action and made a couple of appointments with doctors for Demian for when we returned back from the tour.
But then when I went back outside to wait with the dancers for the van to go to dinner, I noticed the other dancers were standing around talking, but that Demian had laid down on the very cold marble steps of this gymnasium building and he had fallen fast asleep. I thought to myself, there’s kind of a fork in the road for Demian and me today. And I don’t know why, but I took out my Instamatic camera that I had in my dance bag and I took a photograph of Demian asleep on the steps. After I got it developed, I put it in a frame and it’s been in my bedroom ever since and it’s a tribute to Demian and it’s a way for me to remember him.
I really miss Demian desperately and I also miss dancing the Bill T. Jones master work, D-Man in the Waters. It was a tribute to Demian and to so many of the other people we lost.
The epigram for Bill T. Jones’ piece is a truism by artist Jenny Holzer: “In a dream you saw a way to survive and you were filled with joy.”
Lulu & Her Fairy Godfathers
Story & Recording by Lulu from San Francisco
When I was a little girl, we rented out a room in our large Haight-Ashbury flat to generate extra income. It was always rented to a young gay man, probably because my mum, a single parent, felt it was the safest and most sensible option.
Their room was right next to mine in the front of the house and included a sitting room that we called the “library,” because it had floor to ceiling bookcases, big puffy pillows on the floor and comfy nooks to settle in for reading or taking a nap. It was a common area in the house, but was mainly for our renter’s use, though I could often be found perched on the big overstuffed chair, peering out the window to observe the view of the always entertaining corner of Haight and Ashbury Streets.
If I wasn’t daydreaming, I had my nose buried in a book; such is the life of an only child in a household with no TV. Inevitably, our housemate would slide open the French doors that divided their room to the library and slowly, gently, tenderly, carefully, our friendship would unfold.
The men who lived with us all referred to themselves as my “fairy godfathers” – their term, not mine. As a child, I didn’t understand the tongue in cheek we’re-taking-our-power-back meaning. Once I did, I both grimaced and grinned.
We had about five young men live with us over the years. This was in the late ’70s – early ’80s, before gay people could easily adopt kids or were even really allowed to think, dream about becoming parents in some cases. I was the only child in their circle of friends and was often invited to tag along to their ever so glamorous soirées, Oscar parties, holiday fêtes, and any other over-the-top event that might just really be a Tuesday night but always seemed like so much more. These outings gave my mum nights off from mum-ing and me, adventures to be fondly remembered decades later.
I often found myself sitting crossed-leg in the middle of one of their friend’s exquisitely decorated antique-filled living rooms in the Castro district on a priceless oriental rug, beading necklaces or playing with antique paper dolls (theirs, not mine), Judy blasting in the background, watching a group of lively young men gossip and flirt and dance and share stories about their hopes, dreams, and fears.
I heard them talk about how they had escaped to San Francisco from places like Iowa, Kentucky, Texas, so that they could live and love freely. They had all been disowned by their families for being gay. They had to create their own families, and I was privileged to play the role of the little sister, niece, cousin they had to leave behind or, on an even deeper level, the child they never believed they would ever be able to have. It was from them that I learned my lifelong mantra: Friends are the family we choose for ourselves. And love is love.
Sorry, Lin, but they said it first.
Of course, I was much too young to really understand the implications of all of this, but what I did know was that I felt so grown up and cherished in their presence.
I knew there was something special about these men. To me they were worldly and fancy and sparkly and they knew a little something about everything. And most importantly, they taught me what they knew.
From them, I learned about music and fashion and art and literature and Broadway and why black and white movies of the ’40s were the best movies and that you must always bake with butter, never margarine and that cookie dough is calorie-free and the power of the LBD and that one must always dress up when going downtown and the difference between Barbra Streisand and Barbara Stanwick, Bette Davis and Bette Midler, Oscar the Grouch and THE Oscars, and the importance of wearing sunglasses, even in the fog, to prevent wrinkles, darling.
They were men of great style, class, elegance, intellect, wit, charm, creativity, beauty and fun. They were incredibly cultured and had exquisite taste. My memories of my time with them run deep:
– Going to the “Nutcracker” every Christmas Eve
– Having high tea at Liberty House
– Lip syncing and dancing to the Andrew Sisters “Boogie Woogie Bugle Boy” (I know all the words still, to this day)
– Taking in the Christmas decorations downtown at Macy’s and I.Magnin’s, and ending the day with a cable car ride to Ghirardelli Square for hot chocolate with extra cherries and whipped cream
– Lengthy sermons on the essential need for dust ruffles and monogrammed stationery and silk dressing gowns
To a young child, these experiences leave a mark, a permanent flourish of rainbow-colored glitter sprinkled on her soul.
To my child’s eye, mind and heart, these men were magical. They were my playmates, the most delightful big brothers to a shy, often sad and lonely little girl. They were fun and silly and played dress up and always let me be Cher to their Sonny – a major sacrifice on their part, to be sure!
They told me I was a glittering gem and that I was “fabulous” and they meant it in a REAL way, not a “hey girl hey” way, though we had those moments, too.
They treated me with respect. They didn’t patronize or pander to me. They expected me to keep up my end of the conversation, regardless of the topic or my lack of knowledge about it. Local politics or Best Dressed at the Oscars, my opinion mattered to them.
They didn’t baby me. They treated me like an equal. But that didn’t mean that they didn’t spoil and coddle me. They made me feel special and valued and respected. Perhaps because society didn’t offer them the same respect as gay men, they felt compelled to make sure I was always treated as a whole person.
For a young girl of color, this went far in developing my sense of self and worth and pride in being who I was.
They also showered me with gifts, some that I still have to this day:
– A beautiful hand-woven throw made on an old-fashioned loom
– A hand-beaded necklace with an antique tiny bell at its center (too tiny now for my adult neck but still cherished)
– A beautiful white cake stand from Tiffany’s, an odd gift for a 10-year-old girl, you might think, but as the gift giver said when he handed me the HUGE blue box, “Sweetie, if I’ve taught you nothing else, please remember this: The light blue box is always the BEST box!”
I still have those treasures, but I no longer have my fairy godfathers.
They all eventually succumbed to AIDS. They were all in long-term relationships. Their partners died, too. By the early ’90s, they were all gone.
These men were the first and most prominent adult male figures in my young life; in truth, the only father figures I had growing up. I know for a fact that it is because of my time with them that I am the person, the woman, the friend, the activist, I am today.
They didn’t live to see the many strides and advances that the LGBTQ community has made. If they were still alive today, they would be at the front of the line continuing to fight the good fight for the strides still to be made.
But they aren’t, so I do it for them. It is the least I can do to honor their legacy and repay them for all they have given me.
My description of these men might seem almost disrespectful in its seemingly stereotypical depiction of gay men, but these were the men I knew, as I knew them, when I knew them. This was who they were, at a time when the gay community in San Francisco was thriving and carefree, when the pulse of the disco beat of the day seemed to ring in sync with the beat of the cultural awakening that was taking the world by gloriously gay rainbow storm on the streets of San Francisco.
I am so lucky that I spent my formative years as their fairy goddaughter, wrapped up in the glow of this historical time. But my golden carriage turned into a pumpkin well before midnight of my young adulthood dawned and my fairy god-fathers vanished with it.
I am a better human being because I knew them. THIS, I know for sure.
My fairy godfathers may be gone, but their rainbow-colored fairy dust flows in my veins forever.
They had their Pride. And they gave me mine, too.
Love,
Lulu
The AIDS Atlanta Outreach Team
Story & Recording by Misha Stafford
This story originally appeared in The AIDS Memorial on Instagram.
After graduating from college, I moved to Atlanta, Georgia for my first real job and I began volunteering for AIDS Atlanta.
This is a picture of myself, with seven of the best friends I ever had, taken in September of 1990. We were trained in an outreach project that gave talks about HIV/AIDS and safe sex.
We spoke at churches — if they would have us. We spoke to schools, civic organizations, local groups — any group that would let us in the door. We came up with a whole routine that had both humor and a very serious aspect to it.
I share this very scared picture of mine, my friends, my “Band of Brothers.” We were having a cook-out that night and waiting on all of our other friends to arrive when someone snapped this pic. It’s old, it’s not in great shape — but it means the world to me.
We were listening to Roxy Music that night, and the songs “Avalon” and “More Than This” can still take me back to every detail of that evening.
I have “ghosted” my friends’ images so that those who are too young to remember the early days of AIDS epidemic can maybe understand, just a bit, what it’s like to be the last one left.
In this picture are two high school teachers, one attorney, one in law school, one hairdresser, one college student and one carpenter. They each have their own, unique story. By 1997, all had succumbed to AIDS, including my best friend, Phil, and I was the last one left. The only one alive.
I left Georgia after this, taking a position in south Florida. I found that you can change your surroundings, but you still carry the hurt, the loss, and the grief wherever you go.
My First Love Story
Story & Recording by Brice LaBarthe
This story first appeared on The AIDS Memorial on Instagram
It all happened in Toulouse, France between August 1986 and September 1989. Eric Jussiaux (1964-1989) was 22 years old … six years older than me. Eric would become my first love story.
I noticed Eric in a cafe-bar one day after class. We looked at each other in such a way I knew something was going on. And when I was on my way back home, I will always remember I could feel he was behind me. I turned back, and I saw him. We were both too shy so it was only the day after, at the same bar, that we started talking.
Eric was visiting a friend; he was from Paris. We fell in love. He decided to stay in Toulouse.
I knew from the start Eric was HIV positive. Nothing seemed to matter more than to be near him. I never found anyone else with the same energy, sense of humour and creativity. Eric was making everything magical, whatever he was doing: a drawing, a poem or even making coffee, with always a sense of craziness.
Eric was an artist. He could draw, he could paint, he could sing, but what he decided to do was to open a café just opposite my college. That was his masterpiece!
I left college and I went to work with him. The place became the refuge of all the outcasts and weirdos. It was our nest where others were welcome. He was making everyone laugh, me first. He was a true artist, in the sense your life was not the same after meeting him.
AIDS took him in one week. I feel so lucky Eric didn’t have to go through all the torture and agony. One week is long enough.
The Berlin Wall falls, and I am 20 years old. These two events left me in a sort of total indifference.
Eric left. It was like being paralyzed and still today, I can’t get over it. It was so painful, I didn’t attend his funeral. I couldn’t even tell friends or relatives what happened.
And then, I took the courage to ask Eric’s dad for some pictures, as his face started to fade away in my mind. I couldn’t bear it. I only kept a book note of his poems and a love letter.
I still feel he’s behind me, but I never wanted to turn back again.
Jack Foster
Story & Recording by Sandra Bernhard
I met Jack Foster in the summer of 1974, waiting in line to see The Rocky Horror Show up on Sunset at the Roxy Theatre.
He and his whole crew from the San Gabriel Valley were fun, irreverent, crazy and gay as you can be. Jack and I hit it off and started hanging out all the time. We’d go dancing at Studio One, and raise the roof off the joint. He became a bartender and worked at clubs all over Los Angeles, so we could get in for free.
We went to see Tina Turner in 1980, when she struck out on her own after leaving Ike. It was one of the most memorable concerts I have ever seen, and Jack and I bonded over that like nobody else possibly could.
When he first got sick in 1986, he said the doctor told him “Yeah, I can’t eat hotdogs or be anywhere near birdshit.” He goes, “What does that mean?”
And we laughed about it. He kept his spirits high all during his fight against HIV and AIDS. We talked all the time; he’d moved back home and lived with his parents back in the San Gabriel Valley.
The last time I saw him was at County Hospital when he was toward the end of his life. It was a very sobering sight to see my good friend – who was so vibrant and funny and full of life – fading away. I’ll never forget that.
I miss Jack, and he left me a vinyl Tina Turner record that his parents gave to me after he left us. I still have it, and I still miss him to this day.
Brian Pockar, October 27, 1959 – April 28, 1992
Recording and story by Randy Gardner
I’m Randy Gardner. Tai Babilonia and I were a figure-skating team starting when Tai was 8 years old and I was 10. We won the 1979 World Figure Skating Championships and five U.S. Figure Skating Championships between 1976 and 1980.
AIDS had a devastating impact on the professional and competitive ice skating community, so Tai and I wanted to share some of our memories. One of our best friends was Brian Pockar, the U.S. Canadian Men’s Figure Skating Champion and a 1980 Olympian. He came to train with us in Santa Monica almost every year. He and I became really close buds, skating colleagues and confidants.
In September of 1991, Brian came in for Tai’s wedding and stayed with me a few nights. He asked me to take a walk with him down at the beach. We walked for a short time, and he said, “Randy, I have something to tell you. I have AIDS.”
I wasn’t that surprised, as Brian had lost weight, and his beautiful blue eyes and handsome face had started to change. He told me he didn’t think he had much longer. He lasted about six months, and he passed away in April 1992.
Brian was from Calgary, so his parents wanted him to be laid to rest up there. His funeral was the exact week of the Rodney King riots in LA.
I was asked to be a pallbearer and I wasn’t going to miss it. Tai and I were both going to travel together up to Calgary. With the riots, roads were closed, LAX was cancelling flights, and it seemed we weren’t going to be able to get out. We searched and searched for alternate routes, and the only one available was out of Ontario, about 90 minutes outside of Los Angeles. We grabbed a flight, an expensive one, and made our way up to Canada.
Brian was laid to rest in the most beautiful ceremony I’ve ever seen. “Bring Him Home” from Les Miserables was played as he was lowered into the ground:
“He is young
He’s afraid
Let him rest
Heaven blessed
Bring him home”
I visited Brian’s grave a few times after that whenever I was in Calgary. I talked to him and thanked him for his beauty, talent and friendship. A young man, and one I will never forget.
Brian Pockar, 32 years old.
A Grave on Hart Island
Recorded by Judd Hirsch
Story by The AIDS Memorial & Irwin M. Rappaport
Photo by Melinda Hunt for The Hart Island Project AIDS Initiative
A version of this story first appeared on The AIDS Memorial on Instagram
In 1985, the first infant to die from AIDS in New York City was buried in a gravestone marked “SC-B1 1985” on Hart Island, off the coast of the Bronx in New York. That grave is referred to by some as the “Tomb of the Unknown Child.”
“SC” stands for “Special Child” and “B1” stands for “Baby number 1.”
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. Hart Island has been the final resting place for unclaimed bodies and the bodies of the indigent in New York City since just after the Civil War.
I’m Judd Hirsch. This heart-breaking story speaks to me as a native New Yorker.
In 1985, little was known about the cause or spread of AIDS, and empathy and respect for people with AIDS suffered as a result. So, these early AIDS burials were done differently.
Until 2021, burials on Hart Island were done by the Department of Corrections. Its officers supervised inmates from Rikers Island who dug the graves for 50 cents an hour. The officers and inmates were afraid to catch disease from the dead bodies, so they wore protective gear that they threw out after each burial.
Strangely, but perhaps poetically in retrospect, they buried these first 17 AIDS victims in individual graves because of fear and lack of understanding, 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-most tip of the island.
AIDS killed IV drug users who shared needles and their babies who contracted the disease in-utero. It killed poor people whose families and friends couldn’t afford a private cemetery plot. It killed gay men and kids estranged from 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. In 1983, New York State Funeral Directors Association urged members not to embalm AIDS fatalities. These poor souls had nowhere to go except Hart Island.
Eventually it became clear that the bodies of people 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.
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.
Rock Hudson, November 17, 1925 – October 2, 1985
Recording by Matt Bomer
Story by Irwin M. Rappaport
Photo (c. 1955) by Ray Jones
Hi, this is Matt Bomer, and I’m honored to celebrate the life of Rock Hudson.
On July 25, 1985, movie star Rock Hudson, one of the biggest celebrities in the world from the mid-1950s to the mid-1960s, was the most famous person ever to publicly announce he had AIDS. Just over a week before, he had appeared with frequent co-star Doris Day at a news conference promoting her new cable TV show. He looked gaunt and frail. He couldn’t eat a meal that Day had prepared for him. Ten weeks later, on October 2, 1985, Rock Hudson was dead at 59 years old.
An Oscar nominee and a four-time Golden Globe award winner, Rock Hudson never came out publicly as gay. The perceived risks to his career were apparently too great for him to do so. Rumors of Rock’s homosexuality led to a planned exposé in Confidential magazine in 1955, the same year Life magazine named him “Hollywood’s Most Handsome Bachelor.” But his agent Henry Willson (the one portrayed by Jim Parsons in Ryan Murphy’s Netflix series Hollywood) managed to convince them to bury the story in exchange for giving information on two other clients, Rory Calhoun and Tab Hunter.
Soon thereafter, Hudson married Willson’s secretary. The marriage lasted three years. It has been reported that Elizabeth Taylor, Mia Farrow, Susan Saint James, Carol Burnett, Angie Dickinson, Robert Stack, Julie Andrews, and others knew of his homosexuality, but he was such a friendly guy that even John Wayne is said to have remarked, “Who cares if he’s queer? He plays great chess.”
Rock’s first major hit, alongside co-star James Dean, was the 1956 George Stevens western Giant, which also starred Elizabeth Taylor, who would become a lifelong friend. Other hits include romantic comedy Pillow Talk with Doris Day; Come September with Gina Lollobrigida, Sandra Dee and Bobby Darin; and the long-running TV series McMillan and Wife with Susan Saint James.
Rock’s last significant role was a five-month recurring role on the television series Dynasty from December 1984 to April 1985. Hudson was diagnosed with HIV on June 5, 1984, after a dermatologist did a biopsy of a mole on his neck at the suggestion of friend Nancy Reagan, who thought Rock looked too thin. But Rock kept the results a secret for over a year.
Despite their friendship, the Reagans refused to provide him with preferential treatment at a U.S. military hospital, ignoring the pleas of Rock’s publicist. Two days after his press conference with Doris Day, Rock traveled to Paris for treatments that were not approved in the United States, and collapsed at his hotel room at The Ritz. His American publicist announced that Hudson had inoperable liver cancer, but four days later his French publicist admitted that Hudson had AIDS.
Rock flew back to the United States, spent a month in the hospital at UCLA, but was then released to go into hospice care at home.
His AIDS diagnosis was front-page news for almost every major U.S. newspaper in the summer of 1985. Rock sent a telegram to an AIDS Project Los Angeles fundraising event in September 1985, saying, “I am not happy that I am sick. I am not happy that I have AIDS. But if that is helping others, I can at least know that my own misfortune has had some positive worth.”
People magazine reported that more than twice the amount of money was donated in support of AIDS research in the few months following Hudson’s death than had been donated in the entire year of 1984. Rock left $250,000 in his will in support of an AIDS research foundation created by friend Elizabeth Taylor and his physician, Dr. Michael Gottlieb. That foundation later merged with another AIDS organization to become the American Foundation for AIDS Research, known as amfAR.
President Reagan had never spoken publicly about AIDS until September 1985 following a month of widespread publicity about Hudson’s illness. A few days after Hudson’s death, Congress allocated $221 million toward finding a cure to AIDS.
Life AIDS Lobby
Story and Recording by John Duran
Photo from John Duran’s personal collection
(shown from left, circa 1987: John Duran, co-chair of the Life AIDS Lobby; Dianne Feinstein, mayor of San Francisco; and Lisa Kaye from the Eleanor Roosevelt Democratic Club)
My name is John Duran, and I’m the former mayor and council member of the City of West Hollywood for 20 years, former legal counsel for ACT UP chapters here in Southern California, Clean Needles Now the needle exchange, and Medicinal Marijuana. But prior to all that work, I was statewide co-chair for the Life AIDS Lobby.
The Life AIDS Lobby was created when we defeated Lyndon LaRouche’s Proposition 64 back in 1986. And we were quite happy to beat that back 2-to-1; it would have quarantined HIV-positive people in camps, had it passed.
And once we soundly defeated Lyndon LaRouche, we thought our work was done. But within six months, the California legislature had introduced almost 200 separate pieces of legislation on HIV and AIDS, from the most progressive ideas like AIDS education in the classrooms and needle exchange, to the most oppressive and extreme draconian measures like mandatory quarantine of HIV positive people in camps — again.
So we didn’t have, you know, the luxury of dissent at that point. We were under attack.
So we ended up organizing ourselves from San Diego all the way up to the north coast of California, and put 102 organizations together at a common table. Everybody was there. All the LGBT PACs, all the Democratic clubs, all the Stonewalls and Harvey Milks and Alice B. Toklas, all the Log Cabin Republican clubs, all the chapters of ACT UP, the sober recovery community organizations, all the Pride festivals, all the LGBT publications, the California nurses, teachers, health care officers — all at a common table.
And we would come together for quarterly meetings and debate policy, but we knew that with all the confusion and fear around HIV and AIDS, we really didn’t have the luxury of being able to disagree. We had to find a common table to hash out policy and stand united. And that’s what we ended up doing.
So we would meet with the California legislative leadership, Assembly Speaker Willie Brown from San Francisco and Senate Pro Tem David Roberti from West Hollywood, and we’d say the following 102 organizations all agree on these policies.
We would adjourn these meetings in memory of those that we had lost since the last time we met. And sometimes the adjournments would go for 30 minutes or more, as people openly wept about comrades who had fallen and people that had shared that common table with us.
And it was such a somber and sullen moment at the end of every quarterly board meeting, because we all realized, no matter what our political differences or our great diversity or gender or race or anything else — it didn’t really matter, we were all in the fight for our lives, and we were there to do what was best for the common good.
I always wondered why I was, you know, such a young man, living in Laguna Beach at the time and no more than 27-28 years old, and I’m the statewide co-chair. At the time, I was HIV-negative, and it was confided in me that they selected me, because a lot of the men who were positive or had AIDS who were elder statesmen and known and tested leadership, were sick and dying.
So it really became the story of lesbian women and our straight women allies taking the reins, along with some of the younger gay men who were recently infected or still HIV-negative, that would end up coming into leadership, because those that came before us were very, very sick.
It was quite an extraordinary period. Our first executive director was Rand Martin, who’s still up in Sacramento, and our second was the late Laurie McBride, who was just an angel on earth. Both such incredibly dynamic leaders that really made all the difference in crafting California’s compassionate response to HIV and AIDS — which, by the way, became a model for all the other states around the nation.
I think what gives me such a warm feeling about the Life AIDS Lobby, is remembering that there was no time for differences, no time to see something different about the person sitting next to me. We had to link arms and hands and work together no matter what, because our lives were on the line.
Anthony Kabungo, 1948-1992
Story & Recording by Joan Dellavalle
Dear Dad,
This day, the 21st of August 1992, we received the sad news of your passing. We all knew the day will come as each passing day you become more and more frail. You would be in and out of hospital sharing a room with other sick patients, everyone fighting for their life as doctors tried to find out what AIDS was.
When we came to visit you, we observed some patients sleeping on the floor because families could not afford beds for them or the hospital didn’t have enough beds. Those days were hard to witness. I still have visions of grown men crying in pain. I still have visions of you crying in pain in silence and singing “All to Jesus, I surrender.”
In the early 1990s. AIDS was not mentioned — they would call it TB. Watching you go through pain
everyday was heartbreaking. Most third-world countries had no access to medicine, then the only
thing they had was prayer and hope.
You lost your job as soon as they found out you had “that disease” as they called it. Oh, I remember how everything changed for us in a second. I remember how quickly gravity pulled us down. I also remember how you found strength to instill wisdom in me.
I am so grateful to have had you as a father.
1992 feels like only yesterday when you took you last breath to another journey. AIDS took you so quick, like the speed of light. I know you are not in pain and this gives me hope that all those amazing
people out there trying to find a cure of what took you so fast that one day will find a cure.
I advocate for you, my sister and many loved ones we have lost from this cruel disease. I continue to advocate for loved ones living with HIV/AIDS. I advocate to give strength to families and friends watching loved ones fight this battle. I am grateful to have found new friends at The AIDS Memorial that can feel this pain like I do.
Today, I sing our favourite songs. “All to Jesus, I surrender. Take my hand, Precious Lord, lead me
Home.”
It doesn’t matter whether it has been weeks, months or years, the pain of losing you always pinches
me like lightning for a lifetime.
Dad, you fought a good battle.
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
Elizabeth Glaser, 1947–1994
Ariel Glaser, 1981-1988
Story & Recording by Jake Glaser
“My life had certainly not turned out the way that I expected, but while tomorrow would bring what it would, today was glorious.”
– Elizabeth Glaser, wife, sister, mom and angel
On a Los Angeles summer night, in a chance meeting at a stop light on Sunset Boulevard, Elizabeth Glaser, a second grade school teacher, and Paul Michael Glaser, a television star from Starsky & Hutch, rolled down their car windows and found one another on this spinning rock in the cosmos to create a family whose creation, passion, love, fear, tragedy and sacrifice would change the world.
It was in 1981 when my mother, Elizabeth Glaser, gave birth to our guardian angel, our guide in life, Ariel. While in labor at Cedars Sinai in Los Angeles, my mother hemorrhaged and lost seven pints of blood. In order to save her and her baby, a blood transfusion was necessary, one that would forever change the path of their lives. What began as new virus predominantly showing up in gay men, the Human Immunodeficiency Virus was spreading fast and amongst many communities, not just the homosexual community.
My sister Ariel became sick. She would sink into sickness one week and bounce back the next, signs of what most called an extreme flu, but became known soon after as the global health crisis we now know as AIDS.
It was soon after this that I was born, HIV positive and with an unknown future. After years of antibiotics, and medications never designed for the fragility of a child’s immune system, my sister’s HIV turned into AIDS and took my sister’s life at age 7.
A mother’s response to losing her child is like a crack of thunder across the world. My mother knew she lived with this same virus, and so did I. Her only choice was to do something about it. So she asked for help, used her skills of getting people to come together and work together, and applied it to the start of the Pediatric AIDS Foundation, in an effort to raise essential funds for medical research into pediatric treatments for HIV.
She smashed down politicians’ doors, called Hollywood to action with my father, raised the funds, and built a team of interdisciplinary medical researchers to start asking questions to which we did not have the answers. She used every last bit of her energy to humanize this issue, speaking at the 1992 Democratic National Convention, advocating in Washington, and telling her story to the world in hopes of bringing enough light to this dark place so our future could be bright.
In 1994 after witnessing the creation of the first antiretroviral medications and seeing a step in the right direction, her health declined and my mother passed away at the age of 46, when I was only 10 years old.
The spark that she ignited, lit up the world. Elizabeth Glaser and so many others sacrificed their lives to provide us the opportunity we have now, to create a world free of HIV, to make sure no one dies from this disease and to make sure no child is ever born HIV positive again.
Through the collaborative efforts of The Pediatric AIDS Foundation, a medication that was designed for a different use was applied to stop in-utero transmission of the virus from mother to child. The Pediatric AIDS Foundation has grown into a community health organization in 19 countries, with over 5,500 sites across the globe and over 30 million women reached to prevent the transmission of HIV to their babies.
Today we are not only an HIV-focused family, our programs support a variety of health issues, most recently being COVID-19.
The ripple that Elizabeth Glaser and Ariel Glaser left in this world will forever be reinforced by each and every one of us who choose to do something when we feel we can’t, who choose to run into our fears when we feel helpless and show each other that even when we feel all hope is lost, in the darkest moments in the darkest places in our lives, light will always prevail if we choose to turn the light on.
American Love in Paris, 1986
Story & Recording by Dom Denny
I was driving home the other night, when the late Rose Laurens’ 1986 hit “American Love” came on my playlist. Instantly, I was back: a rainy night in Paris. After supper, Lenny and I went to a small club in the Marais. We drank beer, peppermint schnapps, got a little crazy, danced for hours. I watched Carlos dancing and sweating, his shirt off, his perfect body gyrating under the lights, not a care in the world. It was a wonderful night.
There is a sadness in the melody of the track that evokes a kind of unexplainable pain.
There was a cohort of American boys there, many I knew, including Lenny’s little brother Jeffrey. All in their early twenties, courageous and hopeful that time in Paris may mean they had their lives ahead of them. Sadly, none did. Each of those boys died of AIDS within three years.
Their courage and willingness to participate in drug trials at the Pasteur Institute was critical in the development of the medications we now take for granted. The toxicity of the drugs was grotesque at times. I can still see Lenny heaving and sweating, his tolerance to new combinations lessened as his immune system just broke down, constantly trying to fight vile opportunistic infections but never once willing to pack in and go home to Miami.
I loved that boy deeply and to spend that time with him as his life ebbed away was a privilege. He is in my heart forever, and it is amazing how the power of a song can rip open your soul again, 30 years after he died.
Lenny, Carlos, Jeffrey, Andrew, Eddie and many others are all heroes. They literally lay down their lives for us. Knowing as we did that there was no cure, they pushed on, being injected, prodded, biopsied, examined, humiliated, ostracised and judged.
It was a bizarre time. For me, it redefined the word loss. God love them and thank them for their selflessness.
I miss Lenny and will love him forever. This is our history. It is as painful as any chapter recording marginalized minority groups who have experienced adversity, exclusion and the mass loss of a generation of young men.
In Remembrance of Those Who Were Alone
Story & Recording by Cosgrove Norstadt
In 1981, I was living in Ohio and dating a man from New York City. Because of him, I became aware of a strange cancer striking gay men in New York and San Francisco. Unfortunately, in Ohio, no one was worried about AIDS because only people in NYC and San Francisco were at risk.
Four years later, I moved to NYC. I met the Reverend Bernard Lynch who was ministering to those afflicted with AIDS. I ask him how I could help. What could a naive youth from Ohio know about such a massive Holocaust? I wasn’t cut out for ACT UP and criticized for my lack of anger and outrage. I wasn’t angry. I was sad. Terribly sad. I was sad for all the men dying alone in the hospitals.
Bernard directed me to St. Clare’s Hospital to volunteer. They wanted me to wear masks and gloves and footies, but I couldn’t. If I was going to hold you in my arms as you died, I was going to let you touch me, cough phlem on me and cry on my shoulder. From a Christ-like point of of view, I could not do less than Christ himself.
Most men at St. Clare’s lasted two weeks, tops. I hadn’t lived in NYC long enough to make friends. My friends became short term and very deep with the men who were alone and dying. I met sex workers who taught me compassion. I met intravenous drug users who taught me to be accepting. Every two weeks, I lost my newest best friend. All of these men shared their most intimate secrets with me and, most of all, their love.
The number of men I held as they died is impossible to calculate, but as my life continues, I remember the patients of St. Clare’s Hospital. I remember how you were ostracized by friends and family. I remember how, as gay brothers, we loved one another unconditionally.
This is my tribute to those who were alone. They had no friends and no family. I was just a 22-year-old boy from Ohio, learning life lessons I wish never existed. I miss all of you, and I continue to remember you and love you.
Debbie Lynn Kellner, 1964 – 2004
Story & Recording by Crystal Gamet
My Mama, Debbie Lynn Kellner, August 2, 1964 – January 20, 2004.
My beautiful mama, who never knew she was beautiful and never got that message from this world.
I wish that I could tell her how beautiful she was. Losing my mother was like losing part of my own body. I compiled some pictures to share a little bit about who she was.
She was a woman who was born into extreme poverty to a family of ten. She was blessed to be a twin and have that incredibly deep connection in this world.
My mom could not read or write, and she suffered more physical violence than I can ever bring myself to describe — but she survived longer than the men who tried to kill her. She fought to graduate from high school, despite the incredible bullying she experienced for being in the special education program.
My mom contracted HIV at 21 and was convinced she would never have access to romantic love again in her life. This was partially true.
So when she met Tom, he had just been released from prison and he was homeless, so he immediately moved in with us. Even though that got us kicked out of public housing, my mom was willing to overlook that, because at least she had someone who loved her.
Her ashes are buried with him, and I still find this fact sickening.
She survived to the age of 39. She survived the early years of the AIDS epidemic, despite chronic poverty, domestic violence, stigma and depression.
She loved all of my friends. and to the friends who were brave enough to show her love at the end when they knew she had AIDS, I will never forget. I am grateful for how hard to she fought to live long enough to help me grow into the almost-woman I was when she died.
I will miss her forever.
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.
Rolling Through the Pain and Loss
Story & Recording by Marna Deitch
I’m Marna Deitch. In 1980, I lost my parents and grandparents from different illnesses within two months. I was a stage actor in New York City, and I relied on my friends to replace the roots that were just ripped out from me.
We were all young actor/dancer/singers, hanging out at the piano bar with each other and dreaming of accepting our Tony Awards. One of my co-workers at the restaurant I worked at got very ill. I think it was 1981. At first, they didn’t know what it was that was making him waste away. And then they attached a name to it: GRID. Gay-Related Immune Deficiency.
They couldn’t help him. He died. It was a mystery.
The next year, they changed the diagnosis name to AIDS. More and more of my close friends were developing symptoms. Some died quickly, within a few months of diagnosis, and some lingered in a long painful fight. It wiped out the theater community in New York in the early ‘80s, and I lost most of my closest friends.
My high school in Long Island had a big theater department, where a lot of students felt comfortable with coming out, but we stayed friends after graduation. Paul and Steve were together in a monogamous relationship. One night they decided explore opening up their relationship, and they did, only that one night. I can’t remember who died first, but they both died within two years of that one night … and because of that one night.
Of all these losses, one of the most painful was that of Gene, one of my closest friends who disappeared for six weeks and was subsequently found floating in the Hudson River down by the World Trade Towers. George had been Gene’s lover of six years and our friendship went back to high school, where he was my date to prom.
Shortly after Gene’s death, George said to me, “You’re moving to California, aren’t you?” and he asked if he could come with me. I immediately said yes.
“How’d you like to go by motorcycle?” he asked.
I thought he was crazy. Neither one of us had even been a passenger on a bike! But I thought, what the hell, let’s do it. We were empty from all the losses. We had to do something dangerous to bring life back into us.
We took a few lessons and somehow passed our motorcycle road tests. The next day, we bought bikes, packed up and left New York City six weeks later. We left, even though George’s best friend from elementary school, Andy, was battling AIDS. And once we were on the road, I noticed that George wasn’t doing well. He was always tired.
We had planned to camp out on the road, but now he wanted to stay in motels. When we reached Texas, George decided he would head back to New York. I decided to go on to California by myself. And I got to California. By that summer, I turned around to ride back to New York. I wanted to see Andy before he passed, knowing that he was getting bad. But I didn’t make it, he died when I was in Colorado.
And then, soon after, I lost my very closest friend, Kenny. The AIDS went to his brain, causing him to become paranoid. To this day, Kenny’s death was the hardest for me, even harder than the deaths of my parents. It was Kenny who got me through my parents’ funerals and the grief that followed. And now he was gone.
At the March on Washington, D.C. in 1987, I was there for the unfurling of the Names Project and found the quilts for friends who I had lost touch with and were now dead. I left California for a six-week motorcycle road trip and returned home to discover that I lost more friends from AIDS, men who weren’t even sick when I had left.
What I didn’t know on first that cross-country motorcycle trip from New York to California was that George was HIV positive. He had only two or three more years to live. I still have that motorcycle and I had George’s initials painted onto the tank.
But I feel like that motorcycle was their last gift to me. My parents, George, Gene, Kenny, Steve, Paul — it’s like they all said that they weren’t going to be here with me to share my life, so they were going to give me this incredible life to live.
Because of their gift, I have now traveled cross country five times by motorcycle, twice up to the Arctic circle and back, and flew to Hawaii where I rented a bike and road around the Big Island, in order to finally say I have rode my bike through all 50 states.
I have gotten so much recognition because of the motorcycle, which only came into my life because of this pain and loss. I miss them all greatly. But I also know this life I live is because of them and a tribute to them.
one more friend’s death has clocked the day like a tolling bell.'
Assotto Saint, 1957-1994
Recording by Sheryl Lee Ralph
Story by The AIDS Memorial
Assotto Saint (October 2, 1957 – June 29, 1994) was a poet, publisher and performance artist who died of AIDS in New York City. He was 36 years old.
Born in Les Cayes, Haiti as Yves François Lubin, he moved to New York in 1970 and adopted the name Assotto Saint — choosing “Assotto” which is a ceremonial drum used in Haitian Voodoo rituals and “Saint” after Haitian revolutionary leader Toussaint L’Ouverture.
In 1974, Assotto graduated from Jamaica High School, Queens before attending Queens College. During the late 1970s, he performed as a dancer with Martha Graham Dance Company but stopped after an injury.
In 1980, Assotto met his life partner of 13 years, Swedish born composer Jan Holmgren, pictured right. They collaborated on a number of projects, with Holmgren writing songs for all of Assotto’s theatre pieces. They also formed in a “techno pop duo band,” Xotika.
After they were both diagnosed HIV positive, Assotto became an AIDS activist and appeared in Marlon Riggs’ film No Regrets (1993). He was also a mentor to Riggs, Essex Hemphill and Melvin Dixon, who would all succumb to AIDS.
Holmgren died of AIDS on March 29, 1993 in New York. He was 53 years old. The couple are buried alongside each other at the Cemetery of the Evergreens, Brooklyn.
“Life-Partners” is a poem Saint wrote for Holmgren, when Holmgren was dying:
Between solitudes of illness & beatitudes our lips utter,
evening settles in this exile of senses for our surrender,
one more friend’s death has clocked the day like a tolling bell.
Biding time, we are shadows also shrinking early into destiny,
Let us gather our pills & swallow all regrets with a kiss,
cover each other, then weave dreams of another day to come.
Scott Smith, October 21, 1948 — February 4, 1995
Recording by Craig DeSilva
Story by Karen Eyres & Irwin M. Rappaport
Photo courtesy of the Harvey Milk Archives | Scott Smith Collection, Hormel LGBTQIA Center, San Francisco Public Library
Scott Smith was a longtime friend, business partner, political adviser and lover of San Francisco human rights leader Harvey Milk, famous for being the first openly gay man elected to public office in California.
Scott met Harvey Milk in 1969 in New York City, where they started a romantic relationship while working for the Broadway production of the musical Hair. Previously, Harvey had accompanied the show’s touring company to San Francisco and fell in love with the city.
In 1972, Harvey convinced Scott, 18 years younger than him, to move with him from New York to San Francisco. Down to their last $1,000 in collective savings, Harvey and Scott needed to find a cheap place to live and a way to make money, according to Randy Shilts in his book The Mayor of Castro Street: The Life and Times of Harvey Milk.
They decided to open Castro Camera, a photography supplies and service shop that would soon serve as Milk’s campaign headquarters. They chose the Castro District because they heard that apartments there were cheap and they knew of two gay bars that were thriving. Castro Camera opened at 575 Castro Street on March 3, 1973.
Later that year, Scott helped to orchestrate the Coors Beer boycott that elevated Harvey to prominence in the Bay Area’s political scene. One of the first public displays of power by the gay community, the boycott galvanized support behind the Teamsters against the Coors Company, which refused to employ union drivers. Harvey convinced the owners of San Francisco gay bars to boycott Coors beer and it worked — Coors caved in. In return, Harvey convinced the Teamsters to hire openly gay truck drivers, solidifying his reputation as an astute political operator.
Harvey and Scott used the success of the boycott to launch a campaign to elect Harvey Milk to public office. But three unsuccessful campaigns took a toll on their seven-year relationship, and they broke up. However, they still continued their business and political alliance. Scott helped Harvey get elected to the San Francisco Board of Supervisors in November 1977, a major triumph for the LGBTQ community.
When Harvey Milk, along with Mayor George Moscone, was assassinated in late November 1978, Scott was devastated. The violent death of his closest friend sent Scott into a deep depression.
Scott was executor of Milk’s estate, a job that came with the tedious process of resolving Milk’s debts and other open affairs, and he also became head of the Harvey Milk Archives, spending long hours organizing Milk’s papers, speeches, photographs and other ephemera.
Still in the throes of depression two years after Harvey’s death, Scott sought out counseling and began reconstructing his life. He converted Castro Camera into an art gallery, left the world of politics, and started afresh as a travel agent. He continued to work on the Harvey Milk Archives, earning the nickname “The Widow Milk” from his friends.
On February 4, 1995, Smith died of an AIDS-related illness at San Francisco General Hospital surrounded by friends and family. He was 46 years old.
Smith will forever be linked to Harvey Milk’s human rights legacy and life in the Castro District in the 1970s, an era of LGBTQ liberation and empowerment.
Roger Bessey
Story & Recording by Diana Keough
My father, Roger Bessey and my mother, Christine, lived in Milwaukee, Wisconsin. My dad was in the hospital on the brink of death when, on January 7, 1988, we discovered he’d been living a double life for 27 of the 37 years he’d been married to my mom and that he was infected with AIDS.
Three weeks later, we found out he’d infected my mother. He told me later, he had a strong suspicion he was infected with AIDS and was hoping he’d die without anyone finding out.
My world came crashing down. Not only did my five other siblings and I have to deal with my father’s double life, but we also had to get our minds around the fact that both of my parents were dying of AIDS during a time period where there was so much fear and misinformation about how it was spread and how you got it.
The rumors, the threats of blackmailing were so overwhelming, we had to move my dad out of town and change his name. We quickly sold the home they had lived in for 25 years and moved my mother to other side of town. My parents never spoke again.
Friends would come into my home and not eat or drink anything; many were afraid to touch me, afraid that they could get it from me. One friend even told me she couldn’t be my friend anymore because I “didn’t come from a nice family.”
My parents’ lives and deaths still make me so sad sometimes. My dad could never be who he truly was, afraid of what others would think.
Robert Wagenhoffer, July 5, 1960 – December 13, 1999
John Curry, September 9, 1949 – April 15, 1994
Recording by Tai Babilonia
Photo courtesy of CBS (from left): Tai Babilonia & Randy Gardner, John Curry, and Robin Cousins & Elizabeth Manley
I’m Tai Babilonia. When my ice skating partner Randy Gardner and I turned professional after the Lake Placid Olympics in 1980, we had a new family called the Ice Capades — which at that time was the number one touring ice show in the country.
In 1983, after we completed our three-year contract with the Ice Capades and started touring with other shows, I started hearing that some of the guys that Randy and I toured with from the Ice Capades chorus, a.k.a. “Ice Cadets,” were suddenly dying from this mysterious disease called GRID (gay-related immune disease), which would later be named AIDS.
It seemed like we were losing someone every month. I started keeping a list of our friends from our beloved skating family, and also started including friends from the dance and entertainment world.
My list was getting long. It was at least 62 friends that had died by the early ’90s.
Because it was getting too emotional and heartbreaking for me, I stopped adding names of loved ones that we had lost. I was numb. That list is now tucked away in a very special place, and I honor the beautiful friends that we have lost by sharing my story and bringing awareness to this horrific disease.
Talking through all of this, it reminded me of a very special show we were in. Randy and I performed in the first AIDS-related skating benefit in 1989 called “Skating for Life” at the New York State Armory. The show benefitted the Design Industries Foundation for AIDS (or DIFFA) and the St. Vincent’s Hospital Care Program, as well as a fund for skaters and other athletes with AIDS.
There are two notable skaters, and the dearest of friends, that I’d like to remember now.
Robert Wagenhoffer was a national-level medalist in the late ’70s who competed in both singles and pairs. In 1979, he won the silver medal at the U.S. Nationals and was on two World Teams. He retired from amateur competition in 1982. He then joined Ice Capades, participated in many professional events, and became a two-time World Professional Champion in Jaca, Spain.
Robert was known for his innovated skating, the height of his jumps, and entertained thousands. Randy and I knew Robert since we were all kids, as we took from the same coaches. He was like family to us. Robert died from complications of AIDS in December 1999.
And of course, there’s the legendary John Curry, of Great Britain. John was a five-time British Champion, and the 1976 European and World Champion. In one of the most memorable free skates in history, he won the 1976 Olympic Gold Medal. He is remembered as one of the greatest stylists and artists in figure-skating history.
Following the 1976 World Championships, John turned pro and founded a touring skating company that mirrored the same lines as a traditional dance company. He even expanded his repertoire to choreography in both skating and dance, and appeared in two shows on Broadway as an actor.
In John’s last professional appearance in 1989, we worked together on a CBS televised special called the “Ice Stars’ Hollywood Revue.” It was the last time we saw John.
John’s legacy remains strong even today, as the Ice Theatre of New York and the next Ice Age have both been greatly inspired by John’s Olympic status to elevate figure skating as a legitimate performance art.
John Curry died from complications of AIDS in April 1994.
Legacy of Survival
Story & Recording by Brenda Goodrow
When I was 6 years old, my adoptive mother told me I was born HIV-positive. That same year, in 2003, my biological father passed away from AIDS-related complications. His family still believes that it was non-AIDS related cancer, but my childhood nurse, who also took care of him at the adult clinic, told me that he refused his antiretroviral treatment until he died. Suicide by AIDS. I grew up telling people it was a drug overdose.
When my birth mom, who everyone expected to pass away from AIDS sooner than later, died when I was in high school in 2009, I was finally able to tell people one truth about my parents: My mom was a homeless drug addict who died of hypothermia outside of a hospital in the dead of winter. I always left out the part about her being HIV positive, though. It was easier to keep my secret that way.
It’s taken me a long time to find forgiveness for them; to not view their deaths as them abandoning me to live with HIV on my own. But in my darkest moments of living with HIV, I found compassion for them in ways I never thought I would. I realized they were just humans who were hurting, too, and if they felt anything close to what I have then I understand why my mom kept choosing drugs and my dad chose to not fight for his life.
Ever since going public with my status and sharing my story, I’ve found so much healing in the amount of love, compassion, and understanding people have extended to me.
In my short-term experience with activism, I’ve heard a lot of talk about the term “Long-Term Survivors,” and how that encompasses way more than just our HIV statuses. People living with HIV are also often survivors of abuse, domestic violence, homelessness, drug addiction, mental illness, and so many other things.
Despite everything, both of my parents were fighters until they died, in more ways than one. I am their surviving story and I’m proud of that. I like to think they are, too.