Stories of Shame

'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...'

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.

'Each moment I spent in the creative space with Howard Ashman remains with me every day of my life.'

Howard Ashman, 1950-1991
Recording by Alan Menken
Story by Irwin M. Rappaport and Alan Menken

Howard Ashman was a masterful writer, lyricist and director, in my opinion the greatest of our generation, who died of AIDS on March 14, 1991, at the age of 40.  My name is Alan Menken.  In a collaboration that lasted 12 years, Howard and I wrote the stage and movie musical Little Shop of Horrors and won two Academy Awards, two Grammy Awards and three Golden Globe Awards for Little Mermaid, Aladdin and Beauty and the Beast.

We forged a collaboration that was intense, creative and supremely effective. Each moment I spent in the creative space with Howard Ashman remains with me every day of my life.

With our first project at Disney, Little Mermaid, some studio executives resisted using the song “Part of Your World,” for fear we would lose some of the younger audience members. But Howard insisted that our audience had to know what our little  mermaid Ariel wanted. She needed to have what he called an “I want” song.

I think that as a gay man, Howard grew up knowing what it felt like to be on the outside, wanting to be a part of the world that he saw around him but somehow not able to fully take part.

For two years, while Little Mermaid was being made, Howard knew he had HIV but he hid his illness from everyone on the movie, including me. We found out later that, during the press junket for Little Mermaid at Disney World in Orlando, Howard wore a catheter in his chest so that he could get medicine intravenously at night. When he saw the parade of Little Mermaid characters at the park, he burst into tears.

Later, those of us who worked with Howard realized why he cried: It was the idea that those characters would live on long after he was gone.

The night we both won our Oscars for Little Mermaid, Howard said he and I needed to have a serious talk, and after we got back to New York, Howard revealed to me that he was sick with AIDS. We had just reached the pinnacle of our careers in both theater and the movie business, and we had worked side-by-side for 11 years, yet my dear friend kept it a secret from everyone he worked with that he had an incurable fatal disease. That’s the kind of fear people lived with back then: fear of rejection, of death, of a fatal illness with no cure, and there was so much stigma and discrimination.

But Howard wouldn’t let AIDS keep him down. He was so determined to keep working, to keep creating magical song moments and unforgettable characters. I think AIDS spurred him on to work even harder because he knew he was living on borrowed time.

Howard and I were brought in to fix Beauty and the Beast while it was being developed. But Howard was too sick to commute back and forth to LA, so he finally had to tell Jeffrey Katzenberg that he had AIDS.  Katzenberg agreed that the production would travel from LA to meet with Howard and me in upstate New York.

At the same time, we were also working on Aladdin, which Howard had initially developed. Because of AIDS, Howard was suffering neuropathies, began losing feeling in his fingers, losing his voice and much of his eyesight, all the while we were collaborating on joyous, incredible songs. Howard was determined to keep working as long as he could.

Towards the end of his life, Howard and I wrote “Prince Ali” from his hospital bed. He was down to 80 pounds. He couldn’t see and could barely speak.

Howard and I won an Oscar for Best Song for Beauty and the Beast. And the movie was the first animated picture ever nominated for Best Picture. Howard had passed before ever experiencing the movie’s success.  The award was accepted by his companion of seven years, Bill Lauch.

'Albert entered the modeling world in an era when supermodels were thrust into the international spotlight and became celebrities in their own right.'

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?

'His showmanship inspired other performers like Elton John, Lady Gaga and Cher to wow audiences with wild wardrobes, eye-popping glitz, and grandeur.'

Liberace, 1919-1987
Story and recording by Jake Shears

When I first saw the video from Liberace’s 1978 concert at the Las Vegas Hilton, I was blown away and forever hooked.  His mirror-clad, silver Phantom V (Five) Rolls Royce limo is driven onto the stage and, after his chauffeur opens the rear door, Liberace emerges wrapped in a white fox fur coat with a 16-foot train, over a glimmering rhinestone and sequin-studded costume, and rings the size of June bugs.  Now that’s an entrance.

I’m Jake Shears, and when I was dreaming up costumes and stage designs for Scissor Sisters, the outrageous, over-the-top looks of Liberace paved the way on a glittery path.  His showmanship inspired other performers like Elton John, Lady Gaga and Cher to wow audiences with wild wardrobes, eye-popping glitz, and grandeur.  Would Gaga have entered the Grammy’s encased in an egg if decades earlier Liberace hadn’t started his Easter show at Radio City Music Hall by springing from a gigantic Easter egg?

And count me in as number 3.  And I actually jumped out of an egg myself at an early Scissor Sisters TV performance many years ago, so eggs all around!  I’ll never forget when I went into the Liberace museum in Las Vegas when it was still up and they had the largest rhinestone in the entire world in a glass case, and I’ve never been the same since.

But Liberace was far more than a showman with crazy costumes and gimmicks.  He was a very accomplished piano player as comfortable with classical compositions as he was with the popular music of his era.  Although critics often scoffed at his playing, he responded, in his words by “laughing all the way to the bank.”

He commanded the stage in Las Vegas for two decades, toured internationally, and starred in his own television variety show, which lasted four years and had 35 million viewers at the height of its popularity.  It has been reported that during his hey-day in the 1950s to the 1970s, Liberace was the highest paid entertainer in the entire world.  He won two Emmy Awards and six of his albums went gold.

Although he never came out publicly as gay, “his closet had walls of glass,” as the head of his foundation is fond of saying.  Anyone who didn’t know this man was gay had willful blindness. Yet he sued a British magazine for libel in 1956 when it clearly implied he was gay.  He managed to win that lawsuit and later settled another one with a US magazine that suggested his theme song should be “Mad About the Boy.”

In 1982, Liberace’s 22-year old former bodyguard and chauffeur, Scott Thorson, sued him for support, claiming they had been lovers and lived together for five years.  The case settled out of court and Thorson wrote a tell-all book about their life together in the late ‘70s and early ‘80s.

When Liberace died in 1987, his doctor reported the cause of death as a heart attack, but a coroner’s report showed that he died from AIDS-related pneumonia.  Two of Liberace’s alleged former lovers also died of AIDS.

'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've found compassion for them in ways I never thought I would.'

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.

'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’s so many who aren’t here any longer.'

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.

'My dad was in the hospital on the brink of death when we discovered he'd been living a double life ... and that he was infected with AIDS. Three weeks later, we found out he’d infected my mother.'

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.

'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.'

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 CenterAt 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.

'Studio 54 defined the emerging age of celebrity.'

Steve Rubell, 1943-1989
Recording by Matt Tyrnauer
Story by Irwin M. Rappaport and Matt Tyrnauer

Steve Rubell was the guy you had to impress with your looks, your style, or your celebrity if you wanted to get through the door at Studio 54, the most famous nightclub of the disco era.  I’m Matt Tyrnauer and I directed the documentary film Studio 54.

In April 1977, Rubell and his longtime friend Ian Schrager opened Studio 54 in a former opera house turned CBS studio on 54th Street in Manhattan where TV shows such as What’s My Line?, The $64,000 Question, and Captain Kangaroo had been produced.  

Studio 54 was a theatrical extravaganza, using its theater and TV studio roots to create movable sets and lighting. The furniture was modular, for maximum flexibility in creating the mood for the moment.

The club was a who’s-who pageant and a playpen of debauchery, where the biggest stars of film, TV, stage, music, fashion, art, politics, and sports would dance, do drugs, and even have sex in the shadows.  Studio 54 defined the emerging age of celebrity.  But signs of trouble emerged early.  Only one month after opening, the club was temporarily closed by the state liquor authority, because the owners only had only daily catering permits. 

Rubell’s flair for self-promotion became his downfall when he bragged in print about the $7 million the club had made in its first year. Studio 54’s tax returns told a different story.  Rubell and Schrager were convicted for tax evasion following an IRS raid in which a second set of books were found hidden in the ceiling tiles of their office. 

A final party in February of 1980 included Diana Ross and Liza Minelli singing a tribute to Rubell and Schrager, while guests such as Jack Nicholson, Richard Gere, Farrah Fawcett, Bianca Jagger, and Mariel Hemingway looked on.  Rubell and Schrager went to prison and suddenly, it seemed, the glory days of disco were over. 

After serving most of the 3½ year sentence and living in a halfway house for a few months, Rubell and Schrager next moved into the hotel business, and again, had spectacular success, opening Morgans on Madison Avenue, the Royalton on West 44th Street, and the Paramount near Times Square. They also opened a new club, Palladium, where the art of Andy Warhol, Keith Haring, Jean-Michel Basquiat, and Kenny Scharf adorned the walls.

Rubell — whose sexuality was an open secret but who never publicly came out as gay — tested positive for HIV in 1985.  He died in 1989 at the age of 45.

'She was dying of a terminal illness, already a year into her death march.'

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.

'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 ... He kept saying his boy was gone.'

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.