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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

$48 million earmarked for HRSA centers in effort to beat HIV/AIDS

“Community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations”

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The Hubert H. Humphrey Building, HHS headquarters Washington D.C. (Photo Credit: U.S. GSA)

WASHINGTON – The Biden administration has awarded more than $48 million in allocations earmarked to medical centers under Health Resources & Services Administration in localities with high incidents of HIV infection as part of the initiative to beat the disease.

Xavier Becerra, U. S. Secretary of Health and Human Services, in a statement said that the contributions are key component of the initiative, which is called “Ending the HIV Epidemic in the U.S.” and seeks to reduce new infections by 90 percent by 2030.

“HHS-supported community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations,” Becerra said. “I am proud of the role they play in providing critical services to 1.2 million Americans living with HIV. Today’s awards will ensure equitable access to services free from stigma and discrimination, while advancing the Biden-Harris administration’s efforts to ending the HIV/AIDS epidemic by 2025.”

The $48 million in government spending allocations went to HRSA centers 71 HRSA-supported health centers across 26 states, Puerto Rico and D.C. — areas identified with the highest rates of HIV infections — to expand HIV prevention and treatment services, including access to pre-exposure prophylaxis (PrEP) as well as outreach and care coordination, according to HHS.

The Ending the HIV Epidemic was set up under the previous administration, which made PrEP a generic drug after an accelerated effort and set a goal of beating HIV by 2030. Biden has continued the project, after campaigning on beating HIV a full five years earlier in 2025. Observers, however, are skeptical he can meet that goal.

Diana Espinosa, acting administrator for the Health Resources and Services Administration, (HRSA) said in a statement the $48 million will go a long way in reaching goals to beat HIV/AIDS.

“We know our Health Center Program award recipients are well-positioned to advance the Ending the HIV Epidemic in the U.S. initiative, with a particular focus on facilitating access to PrEP, because of their integrated service delivery model,” Espinosa said. “By integrating HIV services into primary care, and providing essential enabling services like language access or case management, HRSA-supported health centers increase access to care and improve health outcomes for patients living with HIV.”

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AIDS and HIV

Surviving Voices, “Substance Users, the Recovery Community & AIDS

The Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS

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Surviving Voices is a program of the National AIDS Memorial (Photo Credit: NAM)

SAN FRANCISCO – The National AIDS Memorial Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS through the voices of survivors of the pandemic, now in its 40th year.

More than 700,000 U.S. lives have been lost since the first cases of AIDS were first reported in 1981. Today, more than 1.2 million people are living with HIV, with a disproportionate impact in communities of color and in southern U.S. states.

The Memorial has officially released its most recent mini-documentary, “Substance Users, the Recovery Community & AIDS” following exclusive screenings at two LGBTQ+ film festivals – Frameline45 and SF Queer Film Fest 2021.  The mini-documentary, along with deep dive personal interview segments with survivors and advocates, can be viewed on the Memorial’s website at www.aidsmemorial.org.

“The National AIDS Memorial is honored to have our Surviving Voices mini-documentary featured at these influential film festivals,” said Chief Executive John Cunningham. “It speaks to the important work our organization is doing to share these powerful personal stories of hope, resilience and the journey of survivors around the issue of HIV/AIDS and addiction in an authentic and powerful way.”

“Substance Users, the Recovery Community & AIDS” focuses the camera on the unique challenges of HIV/AIDS faced by this community. Through personal stories of survival, the film powerfully captures the journey of AIDS advocates and those of individual survivors living with HIV/AIDS who have struggled simultaneously with the disease of addiction, in raw, honest and forthright conversations.  It depicts their individual strength, power, hope and resilience, the importance of community, spirit, self-respect, and the will to live with dignity and pride.  It also shows their vulnerabilities, the shame, denial, stigma, and hopelessness they have experienced. 

As Queer Chaplain Bonnie Violet Quintana shares, “I can be as I am. Me getting HIV. Me being in recovery – all of that is a big part of Me.” 

The National AIDS Memorial’s Surviving Voices mini-documentaries are produced and directed by Jörg Fockele and funded through a grant by Chevron, a long-standing partner of the National AIDS Memorial. Community partners include the San Francisco AIDS Foundation, The Elizabeth Taylor 50-Plus Network, Stonewall Project and the Castro Country Club.

“We believe in the power of storytelling and the lessons it can teach current and future generations,” said Huma Abbasi, General Manager, Health & Medical at Chevron. “Our long-time support for Surviving Voices is part of our commitment to sharing the very human experiences that have shaped 40 years of the AIDS epidemic. At Chevron, our success is tied to the progress and prosperity of the communities where we operate. In line with the U.N. Sustainable Development Goals, we believe that healthy, educated communities are critical to that success.”

Surviving Voices is a program of the National AIDS Memorial created to ensure the myriad stories and lessons of the epidemic are captured, curated, and retained for current and future generations.  “Substance Users, the Recovery Community & AIDS” is the sixth film produced in this multi-year oral history initiative, which also includes “The Transgender Community & AIDS,” “The A&PI Community & AIDS,” “Women & AIDS,” “The National Hemophilia Community & AIDS,” and “The San Francisco Leather Community & AIDS.”

“I hope that these mini-documentaries will be as inspiring for current and future generations confronting their own challenges as they were for us when we filmed them,” said Fockele.

Learn more about the Surviving Voices, the National AIDS Memorial, its mission, programs and how to provide support at www.aidsmemorial.org.

Surviving Voices Mini-Documentary: Substance Users, Recovery Community and AIDS:

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AIDS and HIV

Governor Newsom signs HIV & Aging Act authored by Sen. John Laird

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE)

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Photo Credit: Office of the Governor of California

SACRAMENTO – On Friday Governor Gavin Newsom announced the signing of Senate Bill 258, the HIV & Aging Act, authored by Senator John Laird (D – Santa Cruz). Senate Bill 258 will ensure HIV+ seniors are included in the definition of “greatest social need”.

“When I was the Santa Cruz AIDS Agency Director in the 1980’s, it was our dream to have people living with HIV live into old age,” said Senator Laird. “To be very clear, this group was not supposed to age. Governor Newsom signing the HIV & Aging Act is a historic moment for the LGBTQ community, and all those who have been affected by the HIV crisis.”

With the recent advancements in HIV treatment, people with HIV can keep the virus suppressed and live long and healthy lives. For this reason, the number of HIV positive older people is increasing. According to a 2018 California HIV Surveillance Report published by the California Department of Public Health, over half of the people living with the virus in California are now aged 50 years or older. This same report shows that 15 percent of newly diagnosed patients were age 50 and older in that same year.

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE), and the Los Angeles LGBT Center.

Sen. John Laird speaking at PRIDE with the LGBTQ Legislative Caucus June 2021 (Blade File Photo)

Equality California Legislative Director Tami A. Martin notes, “After surviving the darkest days of the AIDS epidemic, many Californians living with HIV are now over the age of 50, but in dire need of support. Thanks to Governor Newsom, Senator Laird and HIV advocates, the Golden State will now make sure that our elders living with HIV have access to food assistance, job training, transportation or any other vital services. We applaud Governor Gavin Newsom for signing the HIV & Aging Act into law, making California just the second state to ensure older Californians living with HIV don’t just continue to survive, but thrive.”

“Thanks to effective treatments, people with HIV are living longer than we could have ever imagined just a few decades ago and now a majority of people with HIV in California are over 50 years old. Unfortunately, our current health and social service systems are not yet prepared to address the unique needs of this population,” APLA Health Chief Executive Officer Craig E. Thompson said adding; “Many older people with HIV are long term survivors of the AIDS epidemic. They have lost countless loved ones and entire networks of social support. They also continue to face discrimination and alarming levels of stigma. We thank Senator Laird for his leadership on this historic bill to ensure that people aging with HIV have the resources and support they need to thrive and age with dignity.”

“We must ensure that LGBTQ seniors have the affirming care and support so they can age in peace with dignity,” stated Laird. “It’s incumbent upon us to not force individuals back into the closet for them to access adequate care. Once again, I’d like to applaud the Governor for his continued support of the LBGTQ community and to my colleagues for making this a priority bill.”

The HIV & Aging Act received unanimous bipartisan support through both chambers of the Legislature and is a legislative priority for the California Legislative LGBTQ Caucus.

Senate Bill 258 will go into effect January 1, 2022.

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