Stories of Resilience
DJing at Eagle’s Nest
Read by Susan Morabito
Story by Jimmy Perigny
Jimmy’s story first appeared on The AIDS Memorial on Instagram
Hi, my name is Susan Morabito, DJ and producer. And I’m pleased to share this story from Jimmy Perigny about his days of DJing at the Eagle’s Nest — a former bar known for low lighting, leather, and Levi’s — on the Westside Highway at 11th Avenue and 21st Street.
Jimmy wrote:
Here is a story I would like to share on World AIDS Day. When I was hired as the Friday resident DJ at Eagle Nest in New York City in 1994, I was forbidden by the owner, Jack Modica, to play any disco or any music from the club the Saint. One night, I sneaked on The Main Event Barbra Streisand extended version at around midnight.
Jack ran into the booth and ripped the record off the turntable and proclaimed, “You are not allowed 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.
* * * *
Jimmy’s story reminds me of a similar one I experienced from the mid-90s, when Michael Fierman was playing the Pavilion one night at Fire Island Pines. He was playing a song called “Move Your Body (Elevation), which was big back then. The dance floor was packed. He then slammed into “Don’t Leave Me This Way” by Thelma Huston, a song from 1977. There was a notable shift on the dance floor.
Dozens of younger guys fled, and just as many people ran to the dance floor, but they were over 35-ish. As I was moving towards the dance floor, I walked past these two guys and one said to his friend, ” What is he playing this for? They’re all dead.”
That comment captured the vibe on the island for several summers. During those days, I never felt the dance floor so divided.
I had to Fight for My Right to Work
Story and Recording by Andrea de Lange
I’m Andrea de Lange and this is my story about what happened to me starting in 1987, when I tested positive for HIV.
I was 23. My boyfriend and I had been living together for a year, and we called each other “soulmates.” But HIV is a litmus test for whether someone really is a soul mate, and John failed miserably.
He treated me like a leper every single day! I was afraid of being single, so I tolerated his rage and cruelty for the next two years. Finally, I kicked his ass out.
All that abuse hacked away at my self-esteem. The support of my friends and family helped me through that scary and stressful time. Being a full-time college student at Cal State Northridge and doing a lot of public speaking and interviews also helped. It rechanneled my pain and fear into ways I could benefit others.
Dr. Tilkian gave me hope that I could stay healthy. I became involved in alternative treatments through holistic healers I met at Louise Hay’s weekly Hayrides and at Marianne Williamson’s Center for living. I became healthier than ever.
This helped me separate myself from all the fatalistic dogma medical sources and the media were imposing on anyone HIV-positive. We were slapped with timelines: supposedly, we could remain asymptomatic for up to five years. Then we’d get AIDS, and succumb to a nightmarish death, within two years. AZT helped fulfill that prophecy, usually much quicker than the timeline.
I got my Bachelor’s in Art, then completed a Master’s program in counseling. While doing an internship, I bought a ’52 Packard from a friend; then side-hustled as a driver and extra on the film Ed Wood. Johnny Depp’s bodyguard and driver became my husband.
Ben and I moved to Albuquerque, and I worked in the HIV field over the next four years. My career was great. But my marriage? Not so much. I ended it after three years. And that, along with several other stressful things, led to my burn out.
I knew of the New Mexico School of Natural Therapeutics, and I completed the school’s six-month, 750-hour program for massage therapy. I returned to LA as a nationally certified massage therapist, and picked up a permit application. It was insulting to learn LA Police Commission was in charge of certifying massage therapists – but it got worse. Applicants needed to submit a doctor’s letter stating they were HIV- and Hepatitis C- negative!
I knew the U.S. Supreme Court added HIV to the Americans with Disabilities Act in 1997. The LA Police Commission was messing with the wrong HIV+ massage therapist.
I contacted the HIV & AIDS Legal Services Alliance, and they provided me with a lawyer. The Police Commission was funded by the U.S. Department of Health and Human Services, so Brad Sears and I literally made a federal case about it.
Our grievance ended after a year, and we won. The commission had to remove all discriminatory wording from permit applications and send permits to anyone previously denied one because of HIV or Hep C. Plus, they had to conduct HIV educational trainings for their staff.
Recently, Brad told me he cited our case in another discrimination case. That is one of many things that make me think it was all worth it.
Wayland Flowers (1939-1988)
Recorded by Mario Cantone
Story by Karen Eyres
Wayland Flowers, who became famous on TV for creating and voicing the sassy puppet Madame, was one of the first openly gay entertainers to find acceptance in mainstream America. When breaking into show business as an actor proved unsuccessful, Flowers began performing in bars and clubs as a puppeteer and comedian. It was during this time he created the now legendary and influential character “Madame.”
I’m Mario Cantone from Sex and the City and Just Like That, and I know a little something about sassy comedy.
After refining his cabaret act throughout the 1960s, Flowers – and Madame – debuted on The Andy Williams Show, a long-running TV variety hour. From there, Flowers became a regular presence on network TV — although it was not unusual for Madame to get more closeups. Madame was gaudy, glamorous, and bitchy… a queer icon. With an act that included edgy jokes and social commentary, Flowers began to garner mainstream success with appearances on hit TV shows such as Laugh In, The Merv Griffin Show, and The Johnny Carson Show. When Paul Lynde left Hollywood Squares in 1979, Flowers and Madame took over the center square.
Flowers offered prime-time television audiences the attitudes of 1970s-era gay men taking their first steps towards Gay Liberation, a point of view that could have been regarded as controversial and provocative to mainstream audiences. Flowers managed to do it without worrying about the network censors, because the dialogue was coming from a dummy.
By the end of his career, Flowers had won two Emmy awards, and had played such venues as the Radio City Music Hall, the Universal Amphitheater in Los Angeles, the Sahara Hotel in Las Vegas, the Guthrie Theater in Minneapolis, and the Warner Theater in Washington, D.C. In 1983, he authored the book Madame: My Misbegotten Memoirs.
Sometime in the early 1980s, Flowers was diagnosed with HIV. His performing career came to an end on September 2, 1988, when he collapsed during a show at Harrah’s resort in Lake Tahoe. Several days later, Flowers was flown by air ambulance to make one last visit to his hometown of Dawson, Georgia. Then he returned to Los Angeles, where he checked into the Hughes House, an AIDS palliative care facility.
Flowers died on October 11, 1988 at the age of 48. His publicist originally reported the cause of Flowers’ death as cancer. In keeping with his request, Flowers was cremated and his ashes were interred with his dummy, Madame, in Cedar Hill Cemetery in Georgia.
Pride Tirade 2021
Story and Recording by John Kelly
Happy as I limp my wrist in pride for us — the outcast, the maligned, the persecuted, the entrapped, the murdered, the sweated, the followed, the avoided, the violated, the blackmailed, the serial-tattooed, the sneered, the ostracized, the erased, the hated, the invisible, the raped, the tolerated, the patronized, the parodied, the joke, the denigrated, the evicted, the diminished, the emasculated, the de-promed, the expelled, the therapized, the shock-treated, the lobotomized, the numbed and the drugged, the lost, the dead, the erased, the removed from tangible history, the persistent dwellers in blessed proximity, the survivors, the warriors, the steadfast, the persistent, the inclusive, the non-ageist, the color blind, the expansive, the essential, the imaginative, the true, the warriors, the activists both stewing and shout spewing, the long term survivors demanding to be honored, the generational glue that is gold, the striving and striding toward our place in the sun that demands to be respected, and the imperative that we acknowledge that the AIDS pandemic ruptured our inter-generational dialogue, and our personal, systemic, collective and more generally cadenced growth.
This/MY generation of artists — and OUR audiences — disappeared.
YOU are standing on our generational, grave–like, culturally curtailed, and tribally intrinsic sinkhole. You may be afloat and faring ok on the gravitas of a vast family of ghosts and heart shattering loss, of dead young unresolved spirits. Advance, as we had done, in your own way and manner, and as you continue to grow and transform the world, please aim to bless the ground on which you re-trace our analog step.
WE walk the very same path.
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.
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.
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.
A Mother’s Unconditional Love
Story & Recording by Aaron Holloway
I never even told my mother I was gay and she didn’t know. While lying there in what I perceived to be my deathbed, I thought that my mother would abandon me. She never did.
I was a graduating senior at Prairie View A&M University in Texas and on my spring break visiting my mother when I was diagnosed with AIDS and end-stage renal failure. When I arrived home, I was greeted very warmly by my mom. Her retirement party was that night. Over the weekend, my health continued to deteriorate. On March 10, 2008, the anniversary of my father’s passing four years prior, my mom insisted on taking me to the emergency room. She drove us to the hospital, where I was born and where my father passed away. I was beyond terrified.
After check-in and having my vitals taken, the nurses began taking several laboratory tests. Within 24 hours, I was checked into the hospital and had an AV fistula implanted into my heart. I was diagnosed with end-stage renal failure. The nephrologist assigned to me was shrewd and proclaimed that my kidneys were “gone” and I would never urinate again.
The same general physician I saw previously in the presence of my mother informed me about my AIDS diagnosis, and thereby outed me — twice. I will never forget what that physician said to me.
“Wake up! It’s AIDS. Are you surprised?”
Miraculously, during one of my dialysis treatments over that summer, my kidneys regained their proper function. I was able to return to my undergraduate studies.
In May 2009, I graduated cum laude from Prairie View A&M University with Bachelor of Business Administration in Management degree. I also graduated cum laude from Texas A&M University – Commerce with a Master of Science in Technology Management degree.
Sylvester, 1947-1988
Recording by Billy Porter
Story by Dave Marez and Irwin M. Rappaport
Sylvester, sometimes known as the Queen of Disco, was famous for an androgynous look and a fierce falsetto voice. Born in the Watts section of Los Angeles on September 6, 1947, he grew up singing in a Pentecostal church but left the church at age 13 and soon after left home after being shunned by the congregation and his mother for being gay.
Refusing to bow to pressure to conform, for his high school graduation photo Sylvester wore a blue chiffon prom dress and his hair in a beehive. He moved to San Francisco in 1970, where he performed for a couple of years with the infamous group of drag performers “The Cockettes.”
He released in a solo album in 1977, performed regularly in gay bars in San Francisco’s Castro neighborhood, and was cast in a cameo singing role in the Bette Midler film, The Rose. It wasn’t until his third album in 1978 that Sylvester found success including his best-known hit “You Make Me Feel (Mighty Real)”. That album, with background vocals from the Two Tons of Fun, Martha Wash and Izora Rhodes, went gold, topped the dance charts in the U.S., and led to major talk show performances and promo tours in the US.
On March 11, 1979, while Sylvester recorded his Living Proof live album in a sold-out show at San Francisco’s War Memorial Opera House, then-Mayor Dianne Feinstein awarded him the key to the City and proclaimed it “Sylvester Day.”
Never forgetting his community roots, Sylvester performed at gay pride festivals that year in San Francisco and London. Another dance hit, “Do You Wanna Funk,” released in 1982, was co-written with Sylvester’s frequent collaborator, writer-producer Patrick Cowley, who died of AIDS that year when the disease was still known as GRID.
Sylvester, along with Joan Rivers and Charles Nelson Reilly, did the first-ever AIDS fundraiser at Los Angeles’ Studio One nightclub in 1982. He called his 1983 song “Trouble in Paradise,” an AIDS message to San Francisco, and performed benefit concerts to raise awareness and money about the epidemic.
Sylvester’s boyfriend at the time died of AIDS in 1987, and Sylvester’s own health began to decline later that year. In the spring of 1988, Sylvester was hospitalized with pneumonia but managed to attend the Gay Freedom Parade in June in a wheelchair.
The Castro Street Fair in October of that year was dubbed “A Tribute to Sylvester.” Although he was too ill to attend, he heard crowds schanting his name from his bedroom and continued to give press interviews, openly stating that he was dying of AIDS and trying to highlight the impact of the disease on African-Americans.
Sylvester James, Jr., died on December 16, 1988 at age 41. At his direction, his body was dressed in a red kimono in an open casket. In his will, he bequeathed all future royalties to two AIDS charities.
In 2005, Sylvester was inducted into the Dance Music Hall of Fame and in 2019 the Library of Congress chose “You Make Me Feel (Mighty Real)” to be preserved in the National Recording Registry.
Growing Up HIV+
Story & Recording by Noelle Simeon
Photo by Julie Ann Shaw
Hello, everyone. My name is Noelle Simeon. I have been living with HIV since I was two weeks old.
Back in November 1982, my mom was attending a routine ultrasound close to her due date. Her excitement of soon meeting her first child quickly turned to dread when it was discovered some of my intestines and other organs were on the outside of my belly, a condition called gastroschisis. An emergency c-section was ordered for a few days later. My birth was complicated, to say the least.
The first year of my life was spent in and out of the hospital with six surgeries and a blood transfusion. The main surgeon didn’t want to go through a possibly lengthy process of getting blood from my immediate family, so he recommended using the hospital’s blood bank. Now, this is a world-renowned hospital with some of the best surgeons, so my parents listened.
A few years later, my parents received a letter stating that because I received a blood transfusion, I should get tested for HIV. When the test result came back positive, the hospital suggested my parents keep my HIV+ status a secret to protect me from being alienated from our family or friends.
Ryan White, the middle school student who was banned from attending his school because he was HIV+, was freshly in the news, so my parents listened … at least for a little while. My mom told a few of her close friends whose girls were in my Girl Scouts troop, which quickly led to the entire troop finding out.
An emergency meeting was called. My parents organized for my doctor and another infectious disease doctor to come and educate the parents and Girl Scout leaders. Although only a few felt uncomfortable with me staying, as they didn’t want their daughters to get attached to someone who was just going to die, my parents chose to take me out of the troop. They didn’t want to stir any trouble.
Eventually, the rest of my family found out about my HIV status. I was loved and cared for, never feeling ostracized or unloved by anyone in my family. They are my biggest supporters to this day, and for that, I am forever grateful.
Growing up HIV+ was very alienating in other ways, however. Due to my health, I didn’t go to regular school and was home-schooled for a large chunk of my childhood. I didn’t attend school until about the third grade, and went to my first public school in seventh grade. Until then, my days were mostly spent by myself unless my cousins or family friends with kids were getting together with my parents.
But my lack of social interaction was changed when my parents found Paul Newman’s Hole in the Wall Gang Camp and Camp Laurel. Hole in the Wall Gang Camp is a camp for children with any kind of disease. It was in beautiful Connecticut, its sole location at the time, and I got to fly by myself for the first time in my life.
I remember thinking how green the ground looked as we landed. Camp Laurel is a camp specifically for kids infected with or affected by HIV/AIDS, so direct family members like my younger sister could also attend.
We didn’t need to worry about remembering to take our medications because the staff and counselors kept track. We could just be kids, and run and play and sing camp songs and ride horses and learn to fish and have our first crush and first kisses and tell campfire stories. They were the best summers of my entire childhood.
At one of these camps, I met a girl who was also blood-transfused with HIV at the same hospital as me. Her name was Anique, and she had been going to Hole in the Wall Gang Camp for a few years. Her last wish was to go for one last summer, and so her parents made it happen.
We had never met before, but there was an instant kinship felt between us. Anique even gave me a present: a cute, stuffed bunny that I named Benjamin. Unfortunately, she didn’t survive the drive back home and passed away.
Hers was the first death I experienced. I remember her coffin was so small, and it scared me without me really understanding why. I was nine. I still have Benjamin.
It was not my last death of kids from camp. I still remember and think of them often. Some of their names are Nathan, Billy, Dawn and Raytasha.
Living with HIV when you’re young is interesting. There is no specific time or incident I really remember, but my mom would explain that I had “special blood,” so if I were to ever fall or get cut, I should not let anyone touch it.
I could never be blood brothers or sisters with anyone. When I was a teenager, my doctors told me not to kiss anyone, as my braces could cause me to bleed.
A very small circle of my friends knew about my HIV status when I was in middle and high school, and a few teachers who I deemed to be “cool.” The stigma surrounding HIV made me reluctant to tell many people.
As I got older, I told more and more friends, growing more and more tired of curbing my conversations and hiding my medications. In 2020, I flat-out went public with my HIV status, posting a lengthy letter on my personal blog and social media. The pandemic made me realize that if I wanted to be protected, then I would have to be honest with everyone I have in my life.
HIV/AIDS affects everyone who has it differently, but there’s this underbelly of shame that is carried with each person. My current therapist has experience with the HIV/AIDS community, and with her help, I’ve been able to let go of some of that shame.
I believe living with any disease creates a kind of continuous trauma of explaining yourself, fighting for your medical rights, and feeling side-effects from treatments and medications.
Therapy has made me see how hard it is even to speak about my feelings about having HIV, as I am never asked how it makes me feel. I’m used to telling my story, but those are all the facts and bullet points, not the emotional tolls or daily consequences that are paid. Even writing this has stirred a lot of uncomfortable feelings.
But, I believe having HIV has given me a strength and fortitude that I wouldn’t have otherwise. The people and experiences and hope I have felt is unbelievable.
Being told for most of your life that it’s a miracle you are even here is very humbling. It makes you want to treasure the blessings and the failures in life, because at least you’re here to fail or succeed, because there are so many who aren’t here any longer.
Spirituality, Medicine, and Art
Story & Recording by Vasilios Papapitsios
My name is Vasilios Papapitsios. I became HIV-positive when I was 19, in North Carolina, through barebacking. The first five years I lived with HIV, it’s like I was stuck in a vacuum. I couldn’t breathe.
In 2011, three months after my diagnosis, I was expelled from the University of North Carolina at Chapel Hill under homophobic claims that I was the center of the local HIV outbreak. This was simply not true.
The school told me I was a threat to campus and banned me from stepping foot on the grounds. This caused me serious mental health issues which forced me into a dark place for many years. I even went to the ACLU for assistance, but decided not to put up a fight, because that meant disclosing to the public and to my family.
I didn’t get on antiretroviral treatment because I had little accessibility to care and stigma made me fear taking my next steps. I got really sick. At one point, I was reduced to 104 pounds and 6 CD4 or immune cells. I should have had thousands of those little warriors. My doctors told me I had one to three months left to live, if left untreated.
There I was. staring death in the face. But I made a new start, through spirituality, medicine, and art.
I did an exercise in transmutation with my mentor, Sharon Jeffers. She’s the grandmother I never had growing up and a true mystic. On pieces of paper, she laid down the words “fear” and “love” in front of me. She had me stand on fear and feel with every particle of my being what that felt like. I saw HIV — the virus, as well as the stigma associated with it — as lead in my body: dense, dark, and heavy.
She then asked me to step forward onto love, and to begin visualizing what loving my HIV would look like. Love was only two feet in front of me, but getting there felt like pushing through a wall of cement.
I thought to myself, “I can love HIV.”
As I moved from fear into love, I visualized darkness turning into something full of light, sparkly and golden, pumping life through my once ‘polluted’ tunnels, now made into a magical network of veins transmitting healing forgiveness inside of me. I made the intention to let go, to breathe, and to finally begin to heal and feel pleasure, to experience joy, and be more fully me, by embracing HIV.
Finally I was ready to start my journey towards a more holistic health. It felt like I was taking a deep breath for the first time in a while.
You might wonder why I avoided treatment for five years, especially when doctors tell us how important it is to start treatment as soon as we test positive. I don’t have an easy answer for you, except to say that lots of bad things happened to me during those five years, and I couldn’t cope.
For starters, I was so poorly educated that I didn’t think things would get as bad as they did. Then there was my struggle to get good medical care in North Carolina after they had defunded the AIDS Drug Assistance Program in 2012, not to mention the ugly layers of stigma and self-stigma.
The important thing is that, shortly after I accepted the virus and stepped out of fear, I was ready to take my meds. Within three months, I had gained 30 pounds and my CD4 cells returned to near normal. My body felt better than it had in years. And I was breathing again.
Which brings me around to the role of art in transforming my life. I am an artist. I make digital art and soft sculptures. Disclosure is one of the most important aspects of fighting HIV stigma, preventing the spread of the virus, and gaining a healthy sense of self.
One day I had this idea. I thought, what if I could use art to disclose my status and help others to disclose theirs? And what if it was light-hearted and cute, not heavy and scary?
I began to embroider weathered jocks and underwear I’d lived in since I contracted HIV. I call this series of artworks “Intimacy Issues.” They are like my magical protective garments and have titles like Love AIDS, I’m Poz, and my personal fave, Poz4pleasure.
I began embroidering my underwear as art therapy, and with each stitch, I felt empowered. Through this work, my fear started to dissipate and I could see myself having an intimate relationship again.
I believe there are blessings and hidden blessings in everything, including HIV. As the great Sufi poet Rumi said, “The wound is where the light enters you.” HIV is but one of many wounds I have, but for me it is where the most light pours through.
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.
A Life Shaped by HIV/AIDS
Story & Recording by Louis Buchhold
My name is Louis Buchhold, and I live in West Hollywood, California. My entire adult life has been shaped by HIV and the AIDS crisis. It has done things to me and for me I would have never chosen had I not been gay and HIV positive.
The early talk about a mysterious gay disease didn’t scare me. I was young and horny and full of wanderlust. I was one of those beautiful young men you may have encountered on Santa Monica Boulevard, a runaway from the Midwest, in a life resembling a John Rechy novel.
Before my young adulthood bloomed, I took a wild ride through a world that soon came apart around us. The generation of free love I grew up in had turned to free death. I watched everyone in my life fall to the disease and die.
I was a lucky one. I only had minor and treatable opportunistic infections.
I became an art director at Liberation Publications and oversaw the national bi-weekly magazine, The Advocate. It was a hot time for everyone trying to get the latest information about AIDS, what the government was doing or not doing about the epidemic, about support services, about hate crimes, and details on organizations like ACT UP and how they were making the world aware of what was happening to us.
I vividly recall the growing AIDS quilt photos and stories I laid out – probably the only information small-town gays saw. I felt I had an important function to our community at that time, and it pushed me forward.
At a point the terror on the streets was deafening, and things became so grim. Funerals and wakes were turned into parties set up by the deceased only weeks or days before their death, and strictly intended to be fun memories of and for our friends and lovers. It was too much to think about the corroded decimated shells the disease left behind.
One good friend, Wade, had been a clown, a very sensitive and happy man who believed in the power of laughter and loved nothing more than to make people smile, volunteering his time all over LA. He was a son of fame, born in LA privilege – the privileged family who threw him out, disowned him and left him to the streets, where he was eaten from the inside out by Candida, an opportunistic infection. It was a ghastly way to go. He went through it without family, in County Hospital, only loved by us AIDS outcasts. It was better for his high-profile parents if he died forgotten.
A week after Wade’s ugly demise, all his friends met at his memorial margarita party he arranged. I was loaded. I was so loaded in those days just to make it through. It took a lot to hold back my fear and hatred and agony from all the loss and death. I stood in front of Wade’s photo with my margarita, surrounded by his adoring friends, my friends. I fell apart at the seams, crashed onto my knees and couldn’t catch my breath.
How could such a thing happen to such a beautiful man? How could the world allow, or even sanction, the death of my entire generation of gay men?
All my friends were dead or dying. My youth was stolen. I couldn’t hold onto it. I saw my future: like so many of my kind, I would meet my end alone on the street.
Someone lifted me up and took me home, and the daily drinking continued without a pause. The world hurt too much. Eventually I received my diagnosis and death date, summer of 1997. And like others before me, I tried to drink myself away before the unthinkable happened. Unfortunately, I appear to have pickled myself instead – and wasn’t able to die. I only preserved eternal pain and woke up one day laying in the street in Cathedral City at 40.
Similar to Wade’s memorial, a man pulled me up and drove me to AA. It is there I re-started my life, having mostly no fond memories of my youth. But my health struggle didn’t stop with cleaning up. In 2008, I came home from the hospital to die from complications of HIV/AIDS. I didn’t want to die alone trapped in a hospital bed. I wasn’t expected to live past that week. Miraculously, I lived, my work apparently not completed.
I’m 22 years sober today and over 17 years undetectable on medication. I’m a psychologist in Counseling Psychology, and a licensed Marriage and Family Therapist. I work in rehabilitative counseling and recovery.
POZ magazine: Help, Hope, and HIV
Story and Recording by Sean Strub
I’m Sean Strub, and in 1994 I founded POZ magazine with the tagline “Help, Hope, and HIV.”
Hope was important. At the time, not many people believed there would be many survivors, if any, of the epidemic. And while the media context at the time was AIDS was inevitably fatal, dread disease, terminal illness, no treatment, no cure, no survivors – I was living in a world full of people with HIV who were living vibrant lives, raising their children, making art, going to school, creating businesses, engaging in activism, going to demonstrations, caring for others, despite this tremendous health challenge that was likely and only did kill most of us.
It was important to show the example of people who were leading vibrant and full lives, despite that challenge – especially for people who were culturally and geographically isolated and didn’t have the option of going to an ACT UP meeting in the Village and being surrounded by that kind of support.
At the time when we started the magazine, we had a number of, sort of, rules. When we had science coverage, we made sure that a person with HIV was quoted in the first few paragraphs of the story. We didn’t want to hear just from scientists or just from the clinicians; we always wanted to hear from people with HIV themselves.
We sought to make stars. We put people on the cover no one had ever heard of. They weren’t famous; that’s not why we put them on the cover. They were doing really important and inspiring work, and we wanted to bring attention to what it was that they were doing.
The idea of the magazine was to strengthen our community, foster empowerment, resistance and pride, and give that example of survival and hope to people anywhere who read the magazine.
Our first issue featured Ty Ross on the cover. Ty was a very attractive young man who was the grandson of famously conservative presidential candidate Barry Goldwater. He was interviewed by Kevin Sessums, who at the time was the top celebrity interviewer for Vanity Fair magazine. Hollywood photographer Greg Gorman took really great pictures of Ty, added to the appeal.
Frank Rich was a columnist for the New York Times, and he called POZ “easily as plush as Vanity Fair, and against all odds, the only new magazine of the year that leaves me looking forward to the next issue.”
We were criticized, even for the fact that we had high production values and glossy paper and beautiful photography. As if somehow people with AIDS had to have a publication on newsprint with typos, or something. I never understood that criticism. At the time, the publisher of The Advocate said to a trade publication he didn’t understand why anyone would ever advertise in a magazine with such a grim topic.
In those first years, every month, we ran my lab work — the actual scan of the report from NetPath or Quest or whatever the lab was — and explained each of the different things on it. And then we had different physicians and experts comment on my health.
One of my very favorite ones was when my CD-4 count was down, I think, to 1 and my viral load was in the millions. And one doctor looked at my health records and said: Sean is in very serious shape, he is at great risk at becoming ill, and what he needs to do immediately is A, B and C.
In the next paragraph was a different doctor, also an expert, and said: Sean’s situation is dire, but what he shouldn’t do is A, B or C. He should be doing X, Y and Z.
And it wasn’t about trying to call out one doctor or the other. That was the reality at the time is that people were getting conflicting advice even from people who were expert and well-meaning, because so little was known about how best to treat the disease and the opportunistic infections that arose from it.
We were also very focused on the Clinton administration and their failure to support syringe exchange programs when the science was utterly clear that they were incredibly effective at reducing HIV transmission. And that became a campaign that went on for several years. And we were a thorn in their side.
Bob Hattoy, who worked in the White House, used to surreptitiously report to me what people were saying at meetings when the topic came up or things about the epidemic came up.
A year or so after we started, my health had really plummeted. I had spent the money I had saved in my life; I’d sold my insurance policies to fund the magazine. My CD-4 count was almost non-existent, I had pulmonary Kaposi’s sarcoma in my lungs, and I had lesions all over my body. But we carried on, and we found a path through to a point where POZ became the most trusted information source for people with HIV.
In survey after survey, done by us or by government agencies or even the pharmaceutical industry, found that people with HIV trusted POZ more than they trusted even their own personal physicians or any non-profit organization. The only category of information source that they trusted more were their personal friends who were also living with HIV.
In 2004, I sold the magazine and it found a new life online with a much broader audience around the world.
I’ve done a lot of things in the epidemic. I was involved with ACT-UP, co-chaired the fundraising committee, raised a lot of money. I was at demonstrations at St. Patrick’s Cathedral, climbing on the top of Jesse Helms’ house, putting a giant condom over it, working with the People With AIDS Coalition in the early ‘80s even before ACT UP was around, running for Congress as the first openly HIV-positive person to do so in 1990. I produced David Drake’s hit play The Night Larry Kramer Kissed Me, and in 2014, I published a memoir called Body Counts.
But POZ holds a very special place in my heart, because of what it came to mean to so many millions of people living with HIV and affected by HIV in the U.S. and around the world. And I’m proud that it endures and our community endures.
Daniel Warner (1955 – 1993)
Story & Recording by Mark S. King
It wasn’t easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.
I’m Mark S. King, a longtime HIV survivor.
At 26 years old, with my red hair and freckles that had not yet faded, I wasn’t used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.
As time went on, Shanti grew enormously but Daniel’s health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.
In 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time, I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.
Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, Bruce Vilanch, and AIDS icon Michael Callen were making their way through the gauntlet of cameras to the crowded media room. And then one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway.
“I didn’t know he was going to be here,” he said with wide eyes. “I mean –“
“Who?” I asked. Oh my God. Tom Hanks? Richard Gere?
“He’s with Miss America, Mark,” he said. “They’re right behind me.”
We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.
Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.
I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.
“Ladies and gentlemen,” I said. “Miss America 1993 Leanza Cornett, escorted by Mr. Daniel Warner, co-founder of the Los Angeles Shanti Foundation.”
The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America’s companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.
Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed – glorious, joyful, defiant – in the blazing light of the room.
That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.
And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door.
“Just one more, Mr. Warner?” one suddenly called out.
“Miss America! Just another?”
The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.
Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.
“Boss,” I said to him as they exited the room, “I didn’t know you would be here. It’s just… so great.”
He winked at me.
“I’ll be around,” he said. “I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!”
The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.
Only months later, I received a phone call.
“Mark, this is Daniel,” said a weakened voice. “Monday is my birthday, and I thought that might be a good day to leave.”
Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti, and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.
Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.
* * * * *
This story is an edited version of the essay “The Night Miss America Met the Biggest Star in the World,” which Mark S. King published in March 2015 on his website, My Fabulous Disease. Photo credit: Leanza Cornett and Daniel Warner by Karen Ocamb.
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.