Stories of Stigma
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.
Albert Delègue (1963-1995)
Story by The AIDS Memorial and Irwin M. Rappaport
A version of this story first appeared on The AIDS Monument on Instagram
Recorded by Gus Kenworthy
French male supermodel Albert Delègue was among the top male models of the early to mid-1990s. Albert grew up in Mérilhu, a small village in Southwestern France where he worked as a ski instructor. But Albert’s days as a ski instructor came to an end when, at age 26 while visiting Paris, a friend introduced him to Olivier Bertrand, the head of modeling agency Success, who signed him.
Bertrand told OK Podium magazine, “I realized immediately that he would become a top model. Two days after we signed him, he was already getting a very important contract.”
Hi, there. I’m Gus Kenworthy, and I won the Silver Medal in slopestyle skiing at the 2014 Winter Olympics. When I came out in 2015, I became the first-ever openly gay professional athlete in an action sport.
Albert entered the modeling world in an era when supermodels were thrust into the international spotlight, becoming celebrities in their own right. Naomi Campbell, Kate Moss, Linda Evangelista, Cindy Crawford, Christy Turlington, Claudia Schiffer, and Tyra Banks were instantly recognizable. Some of the male models who, like Albert Delègue, ascended to stardom in that decade include Mark Vanderloo, Alain Gossuin, Marcus Schenkenberg, Werner Schreyer, Greg Hansen and Cameron Alborzian.
In 1991, Albert secured a multi-year contract with Giorgio Armani estimated to be worth 5 million French Francs. Armani’s 1992 cologne ad featured the iconic Bruce Weber photo of Albert’s face pressed against a woman’s shoulder.
Herb Ritts photographed Albert for Versace in 1991. Albert was the face of other top brands, too: Calvin Klein, Valentino, Rene Lezard, Sonia Rykiel, and Kenzo. But Albert’s career lasted only five years, until 1994.
When Albert died on April 14, 1995, his family reported that the cause of death was a skiing accident that they said had happened eight months earlier and had left him paralyzed in the hospital. However, only five days after his death, their story began to unravel.
French newspaper L’Humanité reported that Albert died of AIDS, and similar reporting came out four days later from Spanish newspaper El Pais, which stated that he died of encephalitis developed as a result of the AIDS virus. Later, his family is said to have intervened with the press and censored any further stories about AIDS as the cause of death.
Fellow model Alain Gossuin thought that it was important to tell the truth about the scourge of AIDS. So when he was interviewed on French TV show “Tout es Possible,” he said that press reports of Albert’s death from AIDS were censored by his family. His interview was edited out of the show.
Homophobia was and still is so prevalent that families like Albert’s, and people living with HIV or AIDS, were and are ashamed to admit that they or their loved ones are HIV-positive or have AIDS.
Can you think of another disease where social stigma would convince parents to lie about their child’s cause of death?
Mark Morgan, 1961-1993
Story & Recording by Rev. Dr. Ginny Brown Daniel
My friend Mark Morgan (1961-1993) died of “the flu.” I miss him every day.
He gave me my first job when I was 15 years old in 1986. Mark owned Toomer’s Drug Store in Auburn, Alabama. This was his dream as a pharmacist and a huge Auburn football fan, because the drug store was where we all rolled the oak trees with toilet paper whenever we won a game.
I knew Mark was gay, but we never talked about it because it was the mid-80s in Alabama, and Mark was Southern Baptist. I grieve that I could never talk to him about being gay, but I saw how much he struggled with being a Christian and gay. I assumed that when he was ready, he would share.
Each year, Mark took a vacation to New England. He would tell us about this area called Provincetown and share how much he loved it there. Even then, I knew in the marrow of my being that he went there so that for one week a year, he could truly be as God created him without judgment or shame.
Mark was an active leader in our church and when I was asked to preach the sermon on Youth Sunday, Mark helped me prepare my delivery. I vividly remember practicing my sermon in the sanctuary as he walked down the aisle giving me pointers.
I stopped working at Toomer’s in 1991 but often saw Mark until I heard at Christmas 1992 that he was sick. I really wanted to visit him to tell him my exciting news that I was going to seminary to be a minister. But his parents told me he was in the hospital and was too sick for anyone to visit him. When I asked what he had, they quickly told me and everyone else in town that he had a bad case of the flu.
Mark died on January 5, 1993. I have never said this out loud, but I will say it here in this holy ground of @theaidsmemorial: My friend, Mark Morgan, died from complications of AIDS.
Mark not only shaped my adolescence, he shaped my ministry because I vowed to welcome all in the Church and celebrate that all — especially those who are gay, lesbian, bisexual, transgender — are created in God’s image because my friend Mark was created in God’s image!
AIDS in Prison, and My Lost Brothers
Story & Recording by Richard Rivera
My name is Richard Rivera, and I remember how devastating AIDS was in the New York State prison system. It was much worse than the public realizes or would imagine.
All around me during the early 1980s, prisoners began to experience sudden weight loss, sores in their mouth, a persistent cough, and other inexplicable medical problems. Popping up on the news were rumors of “that gay disease.” Its official name was Gay-Related Immune Deficiency, or GRID. But no one really knew what was going on or how it was transmitted. All we knew was that this new thing was a death sentence.
Ironically, despite our fears and superstitions, prisoners continued to do what prisoners did. Intravenous drug use, tattooing, and high-risk sexual behavior remained the norm.
In 1985, concerned over a friend named David who had disappeared from general population, I convinced one of the nicer officers to sneak me into the infirmary for a visit. When the doors opened, I saw a dorm-like area with beds neatly made with hospital corners lining the wall like a military barrack. But the room and the beds were empty.
The officer pointed to the back of the room, which was much darker. I made my way to an area sealed off with Plexiglas. It had an additional eight beds, on which eight prisoners lay: some on their backs, others in tight little balls. Their eyes were sunken into their skull, their hair thinning; their arms looked like twigs and their fingers were impossibly long. Some of them were covered in sores. One had swollen, purple legs, the skin so tight it looked like ripe fruit. He was softly moaning. It was my friend David.
I met David in 1983 at Great Meadow Correctional Facility, aka “Comstock.” Prisoners called it “Gladiator School,” because of its propensity for violence. I was 17 when I arrived. I couldn’t read or write, and I had no friends and reputation. I got into so many fights that I lost count after the fifth month there.
It was after a particularly violent encounter that I met David. He took me under his wing, showing me who to avoid and what not to do, while encouraging me to wear my glasses and stop eating my fingernails. I had no more trouble at Comstock. But David had a history of intravenous drug use and, I suspected, continued using and sharing needles.
In 1984, I was transferred to Green Haven Correctional Facility, and David followed soon after. He arrived smaller, thinner, and not at all the strong, robust, confident man I remembered. Then a few months later, David was transferred. That’s when I heard rumors of the secret ward and went looking for him.
The conditions in that ward were deplorable. Porters almost never went in to clean, medical staff rarely visited, and officers refused to have any contact with them at all. There were no medications, with the exception of the over-the-counter stuff like cough syrup and Motrin. AZT was still years away.
But every week from 1985 to 1987, I went there to care for David and the other men. David’s condition worsened, and ultimately, he was transferred to St. Agnes Hospital in White Plains, where he died.
The reason I am here today is because of brothers like David — and Jamel and Mongo and Joe and Pierre and Larry — who cared for me, corrected me, encouraged me, nudged me along the way. I went looking for David in that ward, because men like him had saved me, too, from being broken.
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.
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.
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.
Michael Bennett, 1943-1987
Story & Recording by Justin Ross Cohen
Hello. I’m Justin Ross Cohen, and it is my honor to share with you a bit about the life of the great director/choreographer, Michael Bennett. Not only did he change the course of the Broadway musical with his production of A Chorus Line, but the course of my life as well by, in 1976, casting me as Greg in the original Broadway production.
An out and proud bisexual, Michael championed sexual freedom in his work. Greg is one of three gay characters in A Chorus Line, remarkable at a time when homosexuality was still listed as a disease in the medical journals.
On the first day of rehearsals, he whispered in my ear, “Greg is a king, not a queen,” giving me a roadmap not only for the character, but for my life as well.
Born Michael DiFiglia in 1943 in Buffalo, New York, he left high school shortly before graduating to join a company of West Side Story, directed by Jerome Robbins, and was soon dancing in the chorus of numerous Broadway shows.
His choreographic career began while he was a featured dancer on the NBC pop-music series Hullabaloo. As a 10-year-old aspiring dancer, I watched Hullabaloo religiously. Filmed just two blocks from where I grew up in Brooklyn, I would walk by the closed-set studio and stare endlessly into the loading dock area, where they stored the pyramid of block letters spelling out the show’s title. I used to fantasize about dancing on those blocks one day. Ten years later, I was working with the man whose own dancing on them had inspired me so.
Michael Bennett received Tony award nominations for every musical with which he was associated, and won eight.
In 1985, Michael gave the first public indication that he was ill when he withdrew from the British production of the musical Chess. Due to the stigma of AIDS, he withheld the nature of his illness from all but his closest associates, telling others he had a heart ailment. He retreated from the public eye and spent his remaining months in Tucson, Arizona, where in 1986, he died from AIDS-related lymphoma at the age of 44.
Michael once said, “Broadway dance is what I know, what I was, and what I am.”
He dedicated A Chorus Line to — and I quote — “anyone who has ever danced in a chorus, or has marched in step … anywhere.”
Thank you, Michael. You, sir, were one singular sensation.
Tim Richmond (1955-1989)
Recorded by Karleigh Webb
Story by The AIDS Memorial, Irwin Rappaport and Karleigh Webb
A version of this story first appeared on The AIDS Memorial on Instagram
Photo from Tim Richmond: To the Limit (ESPN)
NASCAR’s rough-and-tumble history has its share of legends and folk heroes down South. But a Northerner named Tim Richmond may be the wildest of the bunch.
Hello everybody, I’m Karleigh Webb. I’m a sports journalist with outsports.com, a transwoman athlete, an activist, and I’m a lifelong motorsports fan. As youngster watching NASCAR in the 1980s, I was a fan of Tim Richmond. Because he was that dude. High energy. Free spirit. Raw Talent.
NASCAR commentator Mike Joy recalled, “When he walked into a room, there was suddenly a party going on. And it was just that infectious enthusiasm for life and for racing that really defined him … He was fun to be around. He knew he was the center of attention, and he really kind of cherished it.”
Perhaps that’s why Richmond had the nickname “Hollywood,” and inspired Tom Cruise’s character in the movie Days of Thunder. He was fun even when he was trying to be serious. When team owner Rick Hendrick told Tim to clean up his appearance, the driver responded by appearing in a silk suit, clutching a purse, and a cane like an old woman.
The Tim Richmond story began in his native Ohio, with dreams of Indianapolis. In 1977, he was Rookie of the Year at Sandusky Speedway and was a track champion. In 1978, he was the U.S. Auto Club’s national sprint car Rookie of the Year. In 1980, he was Indianapolis 500 Rookie of the Year. But after that, Richmond took an offer to head south to NASCAR.
He snagged his first of 13 career wins in 1982 on the road course at Riverside. By the end of the 1984 season, Esquire magazine tagged him one of the “best of a new generation.” 1986 was the breakthrough year. Driving for owner Rick Hendrick, Richmond became a Winston Cup championship threat — seven wins, third in the championship. And the Motorsports Press Association named both Tim Richmond and ‘86 Winston Cup Champion Dale Earnhardt as Co-Drivers of the Year.
In 1987, an illness reported as double pneumonia caused him to miss the first 11 races. But when Tim Richmond came back, boy, he came back. He won at Pocono, and then followed it up back-to-back with a win at Riverside. But after six more starts that year, he was too ill to keep driving.
He tried another comeback in 1988. NASCAR reported that he tested positive for banned substances and was suspended prior to start of qualifying for the Daytona 500 that year. Richmond denied the findings and challenged them publicly.
Days later, those substances were identified as Sudafed and Advil. Richmond sued NASCAR for defamation and later settled out of court. He was retested and reinstated later in the year but couldn’t find a ride for any team. By then the rumors concerning Richmond, HIV and AIDS were prevalent. He denied those rumors as well. A doctor friend claimed that Tim was hospitalized due to a motorcycle accident.
Tim Richmond died on August 13, 1989, at the age of 34.
Ten days after his death, his family announced at a press conference that he had died from complications from AIDS and was diagnosed during his breakthrough season in ‘86. It was asserted that he had become infected through sex with an unknown woman. A few months following his death, a Washington DC television station reported on sealed court documents and interviews that showed that a doctor employed by NASCAR had falsified drug test results to keep Richmond out.
Looking back at a brief yet brilliant career, Rick Hendrick concluded that Tim Richmond was 20 years ahead of his time.
“I think he was good for the sport,” Hendrick observed. “He had a tremendous following of fans. He could drive anything. Not afraid of anything. We need a little bit of that charisma today.”
During NASCAR’s 50th anniversary celebrations in 1998, Tim Richmond was named one of the top 50 drivers of all time. In 2002, he was inducted into the International Motorsports Hall of Fame.
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.
Manolo Serrallonga, 1956-1991
Story & Recording by Eric Ulloa
Manolo Serrallonga (February 19, 1956 – June 8, 1991). I know only through my mother’s stories of him. I know, like me, he moved to Manhattan from Miami. I know at this point, I am older than he was when he died.
I know Manolo was my mother’s boyfriend and Quinceañera partner when she was 15 years old. But, I guess the story I know that breaks my heart the most, happened when I was around 9 years old.
My mother started to receive phone calls that would start in silence and then she would hear the song “Hold Me, Thrill Me, Kiss Me” start to play through the receiver. Since this was before Caller ID or any of that, there was no way to identify who was calling. These calls happened a few more times, and eventually stopped. A year later, my mother found out that Manolo had passed away due to complications from AIDS and the mystery finally found its answer.
“Hold Me, Thrill Me, Kiss Me” was the song they danced to at my mother’s quince, and a song that Manolo himself had helped her pick.
I don’t know why Manolo never decided to speak and say his “goodbye” personally to her but my heart shatters to think it was due to the embarrassment and stigma that surrounded AIDS at that time especially in the Latino community.
My mom always talked about the incredible smile Manolo had. I like to think he looks down and smiles at a whole new generation that are living their lives loud and proud and open and who fight for the day that AIDS is relegated to the history books.
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.
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.
Brad Davis, 1949–1991
Story & Recording by Susan Bluestein
Brad Davis shot to instant stardom one night in 1979 in the south of France at the Palais theater. It was the night the movie Midnight Express premiered at Cannes International Film Festival. Before that, Brad had worked as an actor in some prestigious TV shows like Sybill with Sally Field and the mini-series Roots. But, that night before the premiere, no one knew who Brad Davis was.
I’m Susan Bluestein; I was Brad’s wife. I realized then that the experience of a five-minute standing ovation and the commotion that followed would be forever etched in my memory. It was shocking and thrilling to see this short, skinny kid from Tallahassee, Florida and this middle-class Jewish girl from New York frozen in time amongst the movie elite. It was like a dream, not real or tangible, but wonderful. Brad won a Golden Globe award for that performance.
However, around the same time, Brad’s life changed in a very different way, and it wasn’t like a wonderful dream. Brad had just finished a movie, A Small Circle of Friends. His IV drug use and alcohol addiction were at their height. After that movie, he went to visit a friend on the set of the film Heaven’s Gate. He came down with the worst case of shingles and swollen lymph nodes the doctor had ever seen.
Today, they probably would have tested him for HIV immediately, but no one knew this in 1979-1980. Through a miracle and much hard work, Brad got sober in 1981 and tried very hard to repair his reputation in the industry. We were overjoyed to have our baby, Alex, in 1983.
In 1985, Brad went to Cedars Sinai hospital to donate blood, as he always did after Alex was born. He had gotten an acting job in Italy for a few months. Cedars Sinai sent a letter to the house informing him that he was HIV positive. Brad had just finished starring in Larry Kramer’s play The Normal Heart at the Public Theater in New York. This, of course, turned out to be very prophetic.
At first we didn’t really believe it or know what to think. We had so many questions. Was I infected? Was Alex? What should we do and how should we live going forward?
Fortunately, Alex and I tested negative. We decided to keep Brad’s diagnosis secret so Brad could work as long as possible. It had been hard enough for him to resurrect his career. We didn’t think much about it at the time. Brad looked and felt good, but a light had gone out of him, carrying this burden of his past. By then, he had been infected at least five years, maybe more.
He refused to get any medical care for fear of discovery. But in 1989, he wasn’t feeling well and knew he needed help from a doctor. Luckily, he was able to reach out to his friends Larry Kramer and Rodger McFarlane. By then they were major AIDS activists in New York. They sent him to a wonderful doctor, who agreed to see him in secret along with many other actors we found out later.
After his last job, A Habitation of Dragons, he picked up a parasite and couldn’t recover. It was 1991. He didn’t want Alex, who was 8 years old, to see him die a horrible death. He took his own life while he was still able, on September 8, 1991.
Brad’s death shocked Hollywood. Brad had wanted to tell the truth of how he died and what he had been through hiding the truth that he had AIDS. There were many differing opinions as to whether he would have been hired if producers and directors had known.
The truth is he did some of his best work during that time, a mini-series, Robert Kennedy and His Times, being his favorite. He loved that show and felt it was his first really adult role. Brad wrote a proposal exposing the fear and discrimination at the time in the Hollywood Industry about anything related to AIDS. It later became a book.
We made the most of the years we had together with Brad. There was always music, lots of laughter and wonderful friends.
Brad’s motto was always “Don’t postpone joy.” He never did!
Robert Reed, 1932-1992
Recording by Eric McCormack
Story by Irwin M. Rappaport and The AIDS Memorial
Robert Reed, the actor best known for his role as Mr. Brady on the long-running TV series The Brady Bunch, kept his homosexuality a secret from the public. According to his fellow cast members, leading a double life wasn’t easy for him.
Florence Henderson, who played his on-screen wife Carol Brady, recalled in an interview with ABC News: “He was an unhappy person … I think had Bob not been forced to live this double life, I think it would have dissipated a lot of that anger and frustration.”
I’m Eric McCormack. Things were different when Will & Grace entered America’s living rooms. The culture in the U.S. was more accepting of gay actors and gay roles.
But when The Brady Bunch first aired in 1969, hiring an openly gay actor as the perfect father of the perfect TV family would not have been possible. Even Carol Brady’s backstory had to be changed from a divorcée to a widow in order to placate nervous TV executives.
The series, which lasted five seasons, led to TV specials, a spin-off series and feature film adaptations, and is still in re-runs today, which is great, but Reed had been trained as a Shakespearean actor. He had moved to LA to do a TV adaptation of Neil Simon’s Broadway hit, Barefoot in the Park, in which Reed had succeeded Robert Redford as the star. So a TV sitcom wasn’t what he’d envisioned for his career. Rather than revel in the success of the show, he was unhappy and felt stuck in a long-running show he didn’t like.
Nonetheless, the cast became close, according to show creator Sherwood Schwartz who told ABC News: “They were a family. They became a family. They became very attached to each other … Even Bob Reed, who was a personal pain to me, loved the kids and they loved him.”
Reed is reported to have personally paid for a trip for his television kids to New York and London.
After The Brady Bunch, Reed was able to get some of the more serious roles he coveted, and was recognized for that work. He was nominated for Emmy awards for his roles in the mini-series Roots and Rich Man, Poor Man and for the TV series Medical Center. At the end of his life, he finally found the work that he felt was most fulfilling: teaching Shakespeare at UCLA.
Said a friend, “It was the happiest he ever was. He just loved it.”
Robert Reed died in 1992 at age 59. His death certificate listed as cancer as the cause of death, but also showed that he was HIV positive.
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.
Gaetan Dugas (1952-1984)
Recording by Hank Stratton
Story by Karen Eyres
Photo by Fadoo Productions
Gaëtan Dugas died of AIDS at the age of 32 on March 30, 1984, very early in the AIDS epidemic.
Dugas was known by researchers at the Centers for Disease Control as a particularly helpful man from Canada who was forthcoming and transparent about his sexual history, which was very extensive but not entirely unusual for someone who was fully immersed in the sexually liberated gay scene of the late 1970s and early 1980s.
What was unusual about Dugas was the large number of cities on his map of sexual liaisons, afforded to him by his job as a flight attendant for Air Canada. He leased an apartment in Los Angeles and frequently visited other U.S. travel hubs, and he admittedly was sexually active just about every place he travelled to.
For CDC researchers trying to determine how HIV was spreading in the U.S. population, Dugas was invaluable, readily providing names and addresses for many of his intimate partners and giving data that supported some of the early infection pathways of the virus. But in 1987, three years after Dugas’ death, he was erroneously vilified as “Patient Zero” and the person who brought the AIDS virus to the United States.
The publication of the book And the Band Played On by journalist Randy Shilts was quickly regarded as the seminal exposé on HIV and AIDS. Unfortunately, Shilts included in his book a profile of so-called “Patient Zero” to illustrate how the virus could spread. The book referred specifically to Dugas as “Patient Zero” and described him as a Canadian flight attendant with a home in Los Angeles and other cities.
The book implied that the first-known source of the HIV spread in the U.S. was Dugas. Media stories about Dugas exploded. His handsome face accompanied stories in which he was characterized as a kind of “typhoid Mary” who callously spread the virus in the early days of the epidemic.
In actuality, Dugas was not “Patient Zero” and the CDC never considered him as such. The CDC had labeled Dugas as “Patient O,” as in the letter O.
Flash-forward to 2016, when researchers led by evolutionary biologist Dr. Michael Worobey determined that it was impossible for Dugas to have been the original source of HIV in the U.S.
Worobey’s team conducted a genetic study of blood samples taken from gay and bisexual men in 1978 and 1979 as part of a hepatitis B study, and based on the results of the data, concluded
that the AIDS virus was already prevalent in the U.S. in the late 1970s.
According to Worobey, “On the family tree of the virus, Dugas fell in the middle, not at the beginning. Beliefs about Patient Zero are unsupported by scientific data.”
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.
Battling the Stigma
Story & Recording by Hernando Umana
This is by far the most important, scary, liberating post of my life. Here we go — 10 years ago, at a young, young age of 20, I was diagnosed with HIV.
I’ll never forget the moment they told me. It wasn’t possible — I had only slept with three people in my life! This can’t be true.
The first words out of my mouth were, “How long do I have to live?”
That’s how uneducated I was about. it. It had been drilled in my head that gay people get HIV because of wrong-doings and they deservingly die from it. Well, I’m here to shut that shit down.
There is nothing wrong with me, and I am healthier than I’ve ever been. In the last 10 years, I’ve met countless of HIV-positive men. Some of these men are so affected by the stigma that they don’t tell a soul about their status, even go as far as not taking their medication.
In our extremely privileged community, the stigma is more dangerous than the disease. We still have a lot of fighting to do for the people who don’t have the privilege of cost-effective medication.
So I stand on the shoulders of people like @staleypr, who risked his life for us. I stand on the shoulders of the millions of people who had to suffer and die from this disease. I stand on the shoulders of the gay men who were forced out of the closet in such a scary time. These men and women fought and died to get to where we’re at now: To take a pill at night and never have to worry about dying. To get the disease to a point where it is impossible to transmit (undetectable).
How can I be ashamed of this? I honor their legacy by telling my story. So let’s talk about it. Let’s ask questions. Take your PrEP. Use condoms. Be safe. Let’s end this stigma forever and eventually end HIV forever!
To those who have questions: Don’t feel dumb asking anything about it. It’s not your fault there’s such a lack of education out there.
To those who are afraid to talk about their status: You’ve got at least one guy right here 🙂 You are loved. You are beautiful, and there is nothing wrong with you.
I, Hernando Umana, am a proud gay man LIVING with HIV. Fuck, that feels good to say.
Michael Norman
Story & Recording by Elsa Sjunneson
I don’t remember being told my father was dying. I must have been too young when I internalized this information. I always knew he was sick and since my dad was an AIDS educator, it wasn’t like I didn’t know what the disease did.
It was the ‘90s. We were only beginning to know what AIDS was and, at 8 years old, I only understood what it had done to my father. My memories of these days are so scattered. I try to pick up the pieces. I’m still missing some of the pieces. I have letters written to him and written from him to others. I have his artwork. I have his writing. I have the play he wrote about his disease. People tell me I look like him. I have been told that I dance like him. But I cannot draw like my father and our writing styles are vastly different.
As a child, I remember that I clung to the idea of his physical remains – his ashes, because they were the only reminder I had that he had been there at all. I don’t have a gravesite but I do have physical touchstones. I didn’t know that my father could read German or that his artwork wasn’t always abstract and that the things I love in art are influenced by the work he did when I was around him.
I remember going with him to teach AIDS education classes to adults. I have letters thanking him for his teaching and these are the things I choose to carry with me.
It happened to me, it has happened to others: their parents die from AIDS but instead of everyone understanding it like they would cancer or another terminal illness, the sideways glances of misunderstanding cloud their faces. The politics of sex education and gay rights muddle the story of my past and I am forced to politicize the very nature of my identity.
The teddy bear gay pin sits in my jewelry box. The ACT UP pin sits next to it. The photos of drag queens and letters from family sit in my office, and I need to find a way to synthesize the historical image of my father with the reality.
He was Tanya Ransom, a drag queen. He was Michael Norman, an artist, educator and playwright. And he was a patient. And he was my father.
Lawrence Baker Wilkins, 1962 -1994
Story & Recording by Richard Phibbs
Lawrence Baker Wilkins, born November 10, 1962, died July 12, 1994
I have wanted to write this for years, but remembering brings back so much pain that it often seems unbearable. I must do this, though, for my beloved friends who endured so much physical and emotional suffering. Baker Wilkins was my best pal from our 20s into our 30s. He became my brother. We were both new to New York, curious and excited to be away from our small hometowns.
I was terrified of HIV and its mystery. This was New York City in the early 90’s, and it was almost impossible not to equate sex and intimacy with a dark horrible death. Baker was not full of fear the way I was, and that worried me.
We met for lunch one day, and he revealed to me he had tested positive. We held each other and wept. To us, the diagnosis meant that within three to six months, he’d likely be gone. I was devastated, but held myself together for him and hoped. From there it went downhill.
A red spot showed up on his nose. I said, let’s go to the makeup counter and get a cover-up. The woman at the counter sold us a concealer and told Baker to stay out of the sun. She had no idea the spot was Kaposi’s Sarcoma. The cover-up worked for a week until the KS began to take over Baker’s body. He declined rapidly. My most handsome friend was now covered in KS lesions and had wasting syndrome.
He had to have a shunt put in his chest as his veins could no longer stand up to the IV medications. He went home to North Carolina to see his family, and the local massage therapist refused to touch him.
My heart broke for my beloved friend. His courage was remarkable and he wanted to live, so with the help of his longtime partner Rolf Iversen, we investigated everything.
Shark cartilage was said to have healing properties. We tried that. Urine therapy — drinking one’s own urine — was said to stimulate the immune system. He tried that. He tried to live his life as normally as he could. He even went out to Fire Island, but when his skinny, KS-purpled body entered the pool, everyone else got out. My heart broke again.
The next phase came when they had to amputate his foot because the KS had spread. In the hospital,
I held his hand as the excruciating “phantom pains” took over his body.
Baker died. My best friend and my brother was gone at 32. He was a remarkable man.
Selling art was his passion; collecting art was his dream. He was kind to everyone. He was so handsome that everyone wanted to talk to him, and he would spend time with each person that did. Most of them were strangers and he would make them feel heard and important.
After Baker died, Rolf died too, then Bill, then John, then Jose, then 12 other friends. Then my boss, my dentist, and then my doctor. All dead.
I was overwhelmed with sadness, then guilt that I was still alive. Depression set in. I got myself to a therapist and onto an antidepressant. I knew that, as sad as I felt, the gift of life was mine. Seeing Baker fight so hard for his life was a reminder that I had to fight for mine.
Then came a medical miracle. If Baker could only have held on for six more months, he could have received antiretroviral treatment and still be with us. At the time I didn’t believe they would find something. I just couldn’t believe it. I think about Baker everyday. I think about Rolf and all the rest. Sometimes I think I still have PTSD from all the losses.
Sometimes I still equate sex with death, though I remind myself this is a different time. I still weep when I walk by the new condominiums that have gone up where St. Vincent’s stood. I look up and remember those cinder block cells of rooms and the hallways packed with the gurneys of young men with skeletal bodies and KS lesions. I walk by the nearby New York City AIDS Memorial hoping to feel something. I don’t, except a sadness that the names one sees on other war monuments aren’t displayed here, the names of the lost.
Before I go to sleep and when I wake up, I see this photograph of Baker, and somehow this comforts me.
I love you, my dear brother. You fought hard and with such dignity. You were so kind and sweet to everyone. You were brave until the end. I am so sorry the world was not kinder to 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.
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.
Richard Lawrence Reed, 1956-1995
Story by Michael Martin
Richard Lawrence Reed (February 28, 1956 – November 11, 1995) was a beautiful soul, a kind man and my first partner. We met serendipitously. It was August 1984 and I was supposed to be meeting a co-worker, but the plans fell through and I decided to go to another local bar.
As my favorite song of the moment — “My Heartʼs Divided” by Shannon — started playing, I boldly walked up to a man near the dance floor and asked him if he would dance. He agreed, and we became inseparable from that moment on for over 11 years.
I had just turned 19 and was smitten with this lovely man 9 years my senior. Iʼd never had anyone look at me the way Rick did. His blue eyes pierced my very soul. He was gentle, caring, selfless, humorous and had a way of making me feel as if I were floating on a cloud. He loved life, friends, family, the beach, plants, animals and the experiences that went with them all.
Like most relationships ours evolved and deepened after the initial stages of attraction, sex and lust. We become true lovers and friends and began to build a life for ourselves. Neither of us were rich or highly educated, but we were employed and did alright.
Rick always made me feel adored, loved and supported. He never let me down. We had fun learning each others’ idiosyncrasies, going out dancing, and nesting together.
Within a short period of time, Rick started saying he didnʼt feel quite right. It was never anything serious, a cold or a flu, and he would recuperate quickly. At the same time, we were just beginning to hear about the new mysterious “gay illness,” and he decided he wanted to get tested. We tested together sometime in mid-1985. Rick tested positive and I tested negative.
Our relationship was still in its infancy and there seemed no way it could be true, but it was. Rick learned what information was available and soon had a specialist doctor, the only one in the area.
There was never any question in my mind about leaving the man I loved because of a test result or its ramifications. At that moment, Rick was healthy and we were happy. Love doesnʼt end based on a test result.
For a while Rick’s health was fine and he was simply monitored. We proceeded with life as normal, with the exception of keeping his status a secret. Times were different then; there was so much misunderstanding, stigma and ignorance.
Slowly, Rick’s health deteriorated but not in the usual manner associated with AIDS. He never contracted pneumonia or sarcoma. It began with thrush and a gradual decline in his T-cell counts.
There was only one medication available — AZT — and Rick was put on it. Its side effects only made him feel worse. He began to have back problems, neuropathy and a general weakness. As his health got progressively worse, he was forced to stop working and go on disability.
Rick also decided to tell his parents about his status and illness. He was close to them and things were becoming more evident. I told no one, not my family, co-workers, supervisors or friends.
Gradually, due to the stigma surrounding the disease and our own fear, we withdrew from friends we knew would never understand or accept it. Outside of a few close friends, we were isolated but we made our life as pleasant and normal as we could.
Any benefits from AZT quickly stopped and Rick’s viral load kept increasing. We lived in a populated area of South Florida, and as the crisis was finally being acknowledged and funded, opportunities were presented for him to be a test subject for trial medications. I donʼt remember any of their names, but there were many. Rick tried whatever was available over the years, suffering their side effects and reaping little benefit.
Rick deteriorated both physically and mentally. It was gradual, painful and unstoppable. We did as much as we could together, whether it was household things or taking short trips to Disney, historical places, the mountains or visiting family.
In early 1995 on what was to be our last trip together, Rick became rapidly disoriented and argumentative. There had been signs of dementia prior to this, but this was a sudden onslaught. I cut the vacation short and headed home.
Rick was hospitalized upon our return and given what treatments were available. They helped very little. He had exhausted every available HIV medication and nothing could stop the degeneration of his body and mind. His spirit was depleted and he was tired of fighting. We returned home and hospice took over.
It was time to tell my employer about our situation, as I would be requesting time off and juggling caregiving with work. They were very supportive, and between that support and the help of hospice, our last month or so together was a little easier.
We remained deeply in love over the years through this ordeal and that love never wavered, not once — not even as Rick lay dying in a hospital bed in our guest room. He gave up on living, but never on us.
In fact, I think his love for me somehow gave him the courage to face death.
I had no encouraging words and no way to save Rick. All I could do was love him, touch him, and make him comfortable. At this stage, when someone you love is dying before your eyes, there are no words that can properly convey the experience.
Rick died in my arms around 5:00 a.m. on November 11, 1995.
Later, I would find notes Rick wrote to me when he knew the dementia was taking hold and he might not be able to say what he wanted to say. He made a scrapbook of memories of us filled with love notes, cards, an odd memento or just a written account of special moments of our life and love. He left me a book of writings, drawings, stories and poems he had worked on over the years.
Rick was not a famous actor or designer, but he was a loving example of all those whose lives were taken too soon. He made an impact and touched many lives, none more so than mine. He was my world. Although my world was forever changed and my heart ripped apart, the most important thing he left me was a feeling of love, never-ending love.
Rick was special and one of the most giving and loving men I have ever known. All these years later, I still I keep that love safe in a place in my heart for when we someday meet again.
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.
Bearing Witness to Transformation
Story & Recording by Ed Wolf
I met a young gay man on the AIDS Unit at San Francisco General Hospital when I worked there in the ’80s.
He had just been diagnosed with Kaposi’s sarcoma lesions in his lungs and was told he had a short time to live. The medical team contacted his parents, who lived far away, and they came immediately.
During a five-minute meeting with the doctor, they found out their son was dying and also that he was gay. When I met the father, he told me it was harder for him to find out his son was a “fag” than to hear that he would be dead soon.
It took almost three weeks for their son to die. Every day, his parents watched as the nurses — primarily lesbians and gay men, some with AIDS themselves — continued to care for him, clean him and lessen his pain as much as possible.
I was there the morning he died.
When the father stepped out of the room and saw me, he hugged me and cried and cried and cried. He was as tall as me, and his grief was so vast. I remember thinking we were both going to fall down.
He kept saying his boy was gone.
The next day, the parents returned to say good-bye. They thanked everyone for their love and care of their son. The mom took me aside and said she was going to miss me. She said, smiling, that she and her husband had talked and wished they could adopt me and bring me home with them.
I kept in touch with them for a while. They started a support group for Parents of Children with AIDS in their community.