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AIDS and HIV

World AIDS Day: A prose ode to the AIDS Crisis

Telling the emotional truth about dying in the 80s

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Karen Ocamb speaking at AIDS Monument presentation June 16, 2018 in West Hollywood (Photo by Troy Masters)

ORIGINALLY PUBLISHED Jun 17, 2018 (Editor’s note: On June 16, West Hollywood Mayor John Duran, Black AIDS Founder Phill Wilson, Rev. Dr. Steve Pieters and I told stories and sat on a panel with AIDS Monument artist Daniel Tobin as the Foundation for The AIDS Monument collects stories https://aidsmonument.org/ for the project. This is the story I told about the time before I became a reporter for the LGBT press when I provided emotional support for my dying friend Stephen Pender, along with my fellow 12 Steppers. – Karen Ocamb)

I don’t have HIV – but I am an AIDS survivor. I am one of millions whose whole life was changed because of AIDS – someone with PTSD and survivor’s guilt. Given my reckless behavior during the 1970s — why am I still alive when so many others are gone?

I made a promise to each one as they were slipping away – I promised to remember them. And now, 34 years later, many of their names and their faces are fading.

But I remember the time. It is seared into my soul. And I will never forget how such terrible agony forged an incredible existential movement that saved so many lives – if not their own.

And I will never forget how — for what seemed like an eternity in the 80s and 90s — this dispirit collection of despised individuals came together across race, class, and gender to create a spiritual vanguard that reflected the very best of humanity.

I know this because it was my job to witness and record it. But before that, it was my job – my honor and responsibility — to be the very best friend I could be to friends who were dying—many, too many—dying alone, rejected by their families.

I became a journalist for the gay press because I lost so many friends—about 150 when I stopped counting in 1990. I felt being a journalist was a way I could be of service, telling the stories of the unknown and the famous, equal in their desperate struggle to stay alive.

But other than shares at 12 Step meetings or the occasional op-ed, I’ve kept my personal story behind the byline, until now.

This story starts in 1980. I was a Broadcast Associate at CBS News in New York and my bosses got me clean and sober under the Employee Assistance Program.

I was 30 and I was a mess. One night I took the bus to a meeting on Ninth Avenue behind a red door. Someone pulled me aside and said this is a Men’s Stag – but they could see I was desperate and they let me stay. In fact, gay men took care of me, wanting nothing in return, which was not my usual experience in those days.

By 1983, I wanted to do something else before I got locked into the inevitable career trajectory laid out before me.

I wanted to go to LA. My girlfriend pulled out a map, put it on the bed and said, OK, close your eyes and pick a place. I closed my eyes and circled around and around and dropped my finger on the map. She laughed and said, no – try again. I’d landed on Forest Lawn. She moved the map around. I tried again – and again, Forest Lawn. What the hell! My girlfriend was getting a little freaked out. Again – closed the eyes, circle, circle, circle – Forest Lawn. The universe was trying to tell me something.

We wound up on the Sunset Strip, driving around checking “For Rent” signs. We finally found an apartment on Laurel Ave in unincorporated West Hollywood. I did one more gig for CBS News – I produced the Olympics for CBS affiliates out of TV City.

And then my world changed.

I volunteered with the West Hollywood cityhood movement and, because I wanted to be a playwright, I started taking acting classes with Salome Jens to see what actors would do with my words.

It was 1984 and gay men were coming down with this mysterious illness and disappearing. None of us knew what to do. We were terrified. Gay men were pouring into 12 Step rooms searching for help, comfort, a cure. Fairly quickly, families were formed, old grudges were forgiven – and judging someone by old standards of beauty became morally incomprehensible.

Hell – lesbians joked that we’d seen more penises, balls and butts cleaning up our friends than in all the years we pretended to be straight!

Bill LaValle took a handful of us to hospital bedsides where anonymous gay men lay dying alone in the darkness. We brought a touch of humanity, briefly uplifting the burden of grief.

We were doing spiritual triage on a battlefield with no reinforcements in sight.

An odd camaraderie develops during a deathwatch. One night, Bill LaValle and some other folks and I were sitting around the bed waiting for Don Fusco, a young jazz singer, to die. He was in a coma and we would stroke his head and squeeze his hand as we told each other stories. Then we’d fall silent.

Around 3:00am, I couldn’t stay any longer. I kissed Donnie’s forehead and told him I’d always remember him. As I let go of his hand and started to leave – he suddenly shot straight up in bed. We all gasped. I jumped back and I hurried back to my chair. ‘Ok, Ok. I’ll stay.”

The ache was so great. Churning beneath our gentle assurances was a fury at helplessly watching this amazing talent being snuffed out too soon. Bill said Donnie died shortly after I left.

My first AIDS death was Stephen Pender in 1986. A year earlier, I was having a tough time and I raised my hand at a meeting at Fairfax and Fountain and confessed that at five years clean and sober, I was feeling suicidal. This guy raised his hand and said he was nine but at five he was suicidal, too. After the meeting I thanked him and was shocked when he said he remembered me from behind the red door on Ninth Avenue.

For the next year, we did whatever we could to keep Stephen alive. There was the God Squad, who came to clean his house everyday. My HIV-positive sponsee Steve, a health nut, cooked him macrobiotic meals. We all wore masks and gloves when he had his Hickman catheter put in, lest any germ cause an infection. We’d sit on the couch and talk – a distraction from seeing the wrinkles on his jeans getting bigger and bigger as he got skinnier and skinner.

Stephen was a singer, actor and writer and very popular with the Hollywood gay boys. But at some point, they stopped coming around. I was furious. They were abandoning him. Then someone said it was because — in looking at Stephen — they were looking in the mirror at what was going to happen to them. They needed that last shred of denial. I stopped judging after that.

Stephen’s family flew in from Boston and took over his house, kicking out his roommate and claiming all his stuff. He was 35 and in denial. He couldn’t grasp that he needed a will and now the law was on their side.

Stephen was in Cedars-Sinai, too weak to fight after a horrendous bout of throwing up and diarrhea. I don’t know if his family visited him. They were Boston Catholics and while they were proud of his guest spots on TV shows like Hill Street Blues, they were ashamed that he was gay and had AIDS.

I was living off savings and spot jobs so I had free time for hospital visits. Stephan was in the Betty Ford wing – the rich alcoholic ward quietly housing people with AIDS. For some reason, he had his own room.

But hanging with Stephen wasn’t easy. He was angry. He was angry at being abandoned. He was angry at not being able to finish a play he was writing. He was really, really pissed that he was losing his voice. He’d try to sing and he could only get out a raspy few lines past the thrush in his throat and swollen tongue. And he was furious – and deeply humiliated – that as a once proud and fastidious gay man, he had lost control over all his bodily functions. He didn’t care that nobody cared.

Stephen just fumed over dying for no reason.

Sometimes he took his anger out on me over the simplest things. He’d be thirsty and ask for water and as I maneuvered the straw in the cup, he’d yell in his raspy voice, “Let me do it!” His hands were trembling and I knew he would spill it and then get mad at the spill—but I also knew he needed to feel a sense of self-control, of dignity. It was important.

On March 1, 1986, the day Stephen died, I went to Cedars but he wasn’t in his room. The nurse said he had a really bad night with projectile vomiting and they moved him to ICU. When I got there, the nurse said he was in a coma and barring a miracle, would probably die within hours.

Word quickly spread that folks should dash to Cedars to say their goodbyes. For two seconds, I struggled with whether I should stay or go. There was no clue how long Stephen would hang on.

But then I thought of how Stephen had saved me – twice – the first time behind the red door, the second at Fairfax and Fountain. I stayed. I owed him. I had a quick shiver remembering how I waved goodbye to my friends on the airport tarmac as they headed off to Vietnam. I sensed that Stephen was just the first long AIDS goodbye.

I sat with him throughout the day as friends came and went, all of us assuming Stephen could hear us in his coma. One group brought a cassette tape recorder and played some of Stephen’s favorite music. Some of the old Hollywood cute guys came too, looking gaunt and frail. I left the room to give them privacy.

In the in-between time, I read to Stephen or talked to him, or just sat quietly, my hand on his clammy arm or cooling his brow. At one point I had a moment of panic: I bit my nails too deeply and had a slight open wound. What if some of Stephen’s sweat got in there—could I catch HIV? I got up, washed my hands and looked at my dying friend. He was worth the risk. I got a Band Aid and resumed my post.

Late in the night, a small group of black singers came in. They held hands, prayed and quietly sang over him. I forgot how they said they knew him. It didn’t matter. We all felt that he was cradled by the music.

Around midnight, Stephen’s secret young lover came in and the whole atmosphere, the very air in the room changed. It was filled with this spirit of love, a hue of light gold. Something was happening, as if Stephen knew Michael was there. I left them alone.

Stephen’s secret lover apparently had not been cool enough for his other friends. Paul Monette would later say that love in the age of AIDS was like dancing in a minefield. Until now – these two had been dancing in the dark.

When Michael came out of Stephen’s room, he was choked up but at peace. He thanked me for staying, then handed me a paperback copy of “As Is.” Stephen had given me the play, signed by his friend Bill Hoffman – but I’d left it at Stephen’s house, superstitiously fearing that if I took it home, I might hasten his death. We had lots of superstitions and magical thinking in those days.

When I went back into his room, only a hint of the golden glow remained. Stephen had waited for Michael and now it was time to let go.

Suddenly, Stephen’s breathing changed dramatically. I rushed out to get the nurse. “Something’s happening. Come quickly.” The nurse rushed back with me, took his vitals and cupped his head.

“Do something!” I said, panicking. “Isn’t this what you want? He’s dying. If I do something it will only prolong the inevitable.”

I stepped back, overwhelmed. As someone who’s struggled against suicide since I was a teenager – in the face of death, I had just experienced this full-on flush of choosing life.

I calmed down and returned to Stephen’s side, stroking his forearm as his death rattle nudged aside the silence. I told him it was OK to let go. I told him that the warm golden light awaited him on the other side. I told him his friends were waiting there, too. He was not alone.

That night, I was afraid to go to sleep. I kept replaying Stephen’s death over and over until suddenly I realized that his death was like the Third Step: Stephen made a decision to turn his will and his life over to the care of God, as he understood God. He surrendered.

I felt more at peace. I closed my eyes and started to doze off – and then Stephen’s spirit visited me. He was in his hospital bed and he sat up and gave me a big ‘Thank You’ hug.

Stephen’s friends produced a memorial for him at Fairfax and Fountain, after which they planted a small ficus tree outside the church’s side door on Fountain Avenue. It’s still there, a mighty tree now, watered and fed by years of 12 Step coffee grounds and laughter wafting up from intimate conversations.

I think of Stephen every time I pass by. And I see a parade of others, too. The flash of a face tells a whole story. A story like this one – I’m sure you have your flashes and stories, too.

The AIDS crisis was our holocaust. It is our duty and our honor to never forget.

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AIDS and HIV

Peacock will premiere HIV documentary on World AIDS Day

Drew, who was diagnosed with HIV in the late 1980’s when he was only 23 years old, was not paid for his participation in the trial

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Right to Try (2021) Peacock/NBCUniversal Television and Streaming

NEW YORK — NBCUniversal’s streaming service Peacock will premiere the documentary short “Right to Try,” which explores one man’s search to cure his HIV, Wednesday on World AIDS Day. 

The film, produced by Oscar-winning actress Octavia Spencer and directed by “The Late Late Show With James Corden” producer Zeberiah Newman, follows HIV survivor and activist Jeffrey Drew’s participation in an experimental vaccine trial. 

“We are thrilled our film ‘Right to Try’ will be seen on Peacock. Though Jeffrey Drew’s heroic journey is singular, his story is universal,” Spencer said in a statement, according to Variety. “This is an important film and with Peacock we have a wonderful partner to bring it to our audience.”

Val Boreland, EVP of content acquisitions at NBCUniversal Television and Streaming, added: “It is an honor to share Drew’s story with Peacock users and raise awareness around the important issue of HIV research. We know the impact of this documentary will be far-reaching.”

The documentary shows the side effects that Drew experienced during the early days of the trial. The coronavirus pandemic interrupted the study, as the doctor spearheading the experimental vaccine started working on the COVID-19 vaccine. 

Drew, who was diagnosed with HIV in the late 1980’s when he was only 23 years old, was not paid for his participation in the trial that a major pharmaceutical company did not fund. 

“There are people who are still getting infected and sick and dying,” he told Variety in a June interview. “I would love to see a generation that doesn’t have to think or worry about this anymore.”
“Right to Try” won the Audience Award for Documentary Short last summer at Outfest, an LGBTQ+ film festival in Los Angeles.

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AIDS and HIV

Los Angeles observes World AIDS Day with star-studded concert

Gay Men’s Chorus of Los Angeles and Juan Pablo di Pace will also be performing at the ceremony

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LOS ANGELES — As World AIDS Day is recognized around the globe, Los Angeles will mark the day with a free concert with a star-studded line-up at The Forum hosted by the AIDS Healthcare Foundation (AFA) and a ceremony at The Wall Las Memorias (TWLA) AIDS Monument in Lincoln Park Wednesday.

In a press release, the AFA said Grammy award winners Jennifer Hudson and Christina Aguilera are set to perform in front of a sold-out crowd. Emmy-nominated comedian Randy Rainbow will host the event, which will take place from 8:00 p.m. to 10:00 p.m.

In addition to the entertainment, the AFA will honor Vermont’s U.S. Sen. Bernie Sanders with a Lifetime Achievement Award and a special video presentation. The award will be accepted by his wife Jane Sanders.

“This year marks two significant milestones in the decades-long fight against HIV and AIDS: first, for the first recognition by the CDC of the virus that led to what is now known as AIDS (40 years ago, in June 1981), and second, the launch of AHF (35 years ago),” the release reads. 

TWLA’s ceremony will reveal an expanded footprint of the surrounding landscape of the country’s only publicly funded AIDS monument. The monument, created in 2004, will also add over 1,000 names of loved ones lost to AIDS to the 360-plus names already etched into it and unveil new artwork. 

TWLM Founder Richard Zaldivar, Los Angeles City Councilman Gil Cedillo and County Board of Supervisors Chair Hilda Solis are all expected to attend the event, which will start at 6:15 p.m. at 3600 N. Mission Road. According to NBC 4 Los Angeles, organizers also hope Los Angeles Mayor Eric Garcetti will be in attendance. 

Gay Men’s Chorus of Los Angeles and Juan Pablo di Pace will also be performing at the ceremony. 

World AIDS Day is observed every December 1 to raise awareness about AIDS and honor the people who have died of the disease. This year’s theme is “End inequities. End AIDS and End Pandemics.”

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AIDS and HIV

National Black Justice Coalition Partners with Twitter for World AIDS Day

Conversations about HIV prevention, treatment, and support on World AIDS Day must center on the Black community.

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Graphic courtesy of the National Black Justice Coalition

WASHINGTON n- On December 1, 2021, World AIDS Day, the National Black Justice Coalition is partnering with Twitter’s #CampaignsForChange and #TwitterIgnite on a campaign to educate people about HIV/AIDS and the importance of their involvement in the fight to end the epidemic. The campaign will center around a safe space on Twitter that encourages the use of the #MyFirstHIVTweet hashtag and urges people to talk about HIV and sexual wellness. ‘

World AIDS Day (WAD) is an opportunity to remember those who have passed due to an AIDS-related illness, support those currently living with HIV, and unite in the fight to end HIV/AIDS worldwide. 

An estimated 37.7 million people globally were living with HIV at the end of 2020, and since the epidemic began in the 1980s, 36.3 million people have died from an AIDS-related illness. 

In the U.S., the Black community is disproportionately impacted by the HIV epidemic, with gay, bisexual, and same-gender loving men and Black women being the most affected. In 2018, Black people comprised 42% (16,002) of the 37,968 new HIV diagnoses, and Black  same-gender loving, gay, and bisexual men made up 26% (9,712) of the new diagnoses. In 2016, Black women accounted for 6 in 10 new HIV diagnoses among women. 

“Conversations about HIV prevention, treatment, and support on World AIDS Day must center on the Black community.  We must reduce stigma in our community, including by having critically important but sometimes challenging conversations about HIV/AIDS,” explained David Johns, executive director of the National Black Justice Coalition.

“There are many people who are engaged in activism around the LGBTQ+ community and racial issues but are notably absent from the conversation around HIV. This is because the epidemic is not visible for them and because they lack accurate information on HIV. My hope is this safe space encourages people to send what will not be their last HIV/Tweet and to consider using NBJC to help find a testing location or to request an at-home testing kit. Too many people are still dying as a result of HIV/AIDS and this does not have to be our reality.” 

NBJC has created this Words Matter HIV Toolkit to support asset-based conversations about holistic health and wellness.  

For more information on how HIV/AIDS impacts the Black community and how to engage during World AIDS Day and beyond, view NBJC’s World AIDS Day Toolkit.  Get tested and know your status. Doctors recommend testing every three to six months.  

You can find a testing site near you at https://gettested.cdc.gov/ or if you are 17 years or older and live in the U.S., order a FREE at-home HIV test kit via the Have Good Sex program. 

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