Karen Ocamb

The APLA AIDS Walk, the Age of Aquarius, and people like me

Filed By Karen Ocamb | October 19, 2009 6:30 PM | comments

Filed in: Living
Tags: AIDS Project Los Angeles, APLA AIDS Walk, Daniel Warner, HIV/AIDS, Johnny Pipkin, LA Shanti, Michael Callen, Stephen Pender

Most of us take historic events in stride, DSC_4195rarely pausing to notice that once something momentous happened that day.

Religious holidays, on the other hand, demand that attention be paid - if only in buying of gifts or breaking of bread.

But for people like me, LGBT and of a certain age, certain events are both historic and spiritual, if not religious - events such as Sunday's APLA AIDS Walk.

Read more below the fold.

I venture that many, if not most, of the 30,000-plus registered walkers are there out of the goodness of their heart rather than the need to DO SOMETHING to combat the overwhelming powerlessness that deluged us during the tsunami of the AIDS crisis between June 5, 1981 - when the CDC published a report by LA doctors Michael Gottlieb and Joel Weisman of the first 5 cases of gay men with a rare new disease - and 1995 when protease inhibitors were approved by the FDA. By the end of that year, it was estimated that 9.2 million people worldwide had died from AIDS.

The mass dying of gay men in America started stopping the next year. At the 11th International AIDS Conference in Vancouver in 1996, scientists announced that combination drug therapy could transform AIDS from an immediate death sentence to a chronic, manageable disease. And the disease started shifting from gay men - who by then had created self-supporting organizations for the education, prevention and treatment of people with HIV/AIDS - into other populations with trouble accessing healthcare.

In LA, HIV/AIDS actually first showed up at the Gay Community Services Center's STD Clinic in 1979. And as gay men started getting sick and dying within weeks - and others just disappeared - the center set up a hotline to try to answer as many panicked questions as possible with no real clear scientific explanations. That hotline grew into AIDS Project Los Angeles, which also started AIDS updates with doctors such as Mark Katz who were fighting not only ignorance about the disease but a hostile society and government. At least a quarter of society, according to a later Pew Research survey, agreed with Moral Majority Rev. Jerry Falwell's pronouncement that "AIDS is not just God's punishment for homosexuals, it is God's punishment for the society that tolerates homosexuals."

So LGBT community came to its own rescue, creating and funding new organizations. APLA's AIDS Walk Bradleywas created by then 25-year-old Craig Miller. Organizers hoped to raise $100,000 that July 28, 1985 - but movie star Rock Hudson had just announced that he had AIDS and 4,500 walkers showed up at Paramount Studios on Melrose - eventually raising $673,000.

I missed the first AIDS Walk - I was still relatively new to LA and I was still in the closet, kind of. But I followed the news about it. And here's where those numbers - from five gay men in LA in June 1981 to 7,699 AIDS cases and 3,665 AIDS deaths in the USA by the end of 1984 - gets personal.

I had just produced coverage of the 1984 Olympics for CBS News affiliates - which was my final gig after 10 years at CBS News - and I started studying to be a playwright by taking acting classes with the incredible Salome Jens.

That's where I first learned about AIDS.

A young man Salome had proclaimed was destined for greatness as an actor/director suddenly landed in the emergency room with an inexplicable brain disease. Salome rushed to his side; he died three days later. In class it was whispered that he was gay and had the new disease. After that, several strapping young actors started wasting away. No one knew what was happening; everyone was afraid.

When Johnnie Pipkin first landed in the VA hospital, he was held in isolation, his food was often left outside, and we were ordered to wear masks, gloves and a surgical gown before seeing him. He wanted so much to be touched -his family had essentially deserted him-and we -the acting troupe, his 12-Step buddies, and his ex-lover - were the only ones this once brazen, funny, and sweet young soul had left to love him.

There was no AIDS Ward or Outpatient (5P21) Clinic then and Johnny's next bout landed him at County hospital where, uninsured, he was placed in a large room with straight men with a variety of illnesses. They didn't much care for the "homo pervert" hidden behind the hospital curtain.

One bout landed him a room of his own. But since County was a USC teaching hospital, he was hostage to the whims of the sometimes cruel nursing staff. Too often he was forced to endure trainees repeatedly sticking him with needles like a pincushion, trying, often unsuccessfully, to find a vein. I wanted to scream at them - to demand that they stop treating him like he wasn't human. But Johnnie screamed at me instead, begging me not to upset them lest they withhold pain medication when he most needed it at night.

So I railed at God instead. And I berated myself for not being Jesus, not being able to go in and wave my hands and heal him. I was utterly powerless.

I failed Johnnie, too. Before he lost his voice to the cancer in his esophagus - the cancer which added to the yeast infection in his mouth and the assortment of fungi on his body and PAC-Man viruses eating at his insides as if AIDS was eating him alive - Johnnie asked me to help him die. It was easy, really - he pleaded. He would drink a bottle of scotch or two, pass out, and then I would hold a pillow over his face. I said no - I wouldn't help him relinquish his sobriety and die with demon alcohol screaming in his brain. I still wrestle with that decision.

The day before Johnnie died in 1986, I helped the homecare nurse lift his skeletal frame from his bed to the wheelchair so he could take one more look at his precious Silver Lake garden. I didn't know how to say goodbye so I just said I'd see him tomorrow. The next day, a Sunday, I was speaking at a straight 12-Step meeting in Pacific Palisades when suddenly I felt a spiritual imperative to talk about what was happening to my gay friends. I spoke from the heart, and several people cried, including me. When I got home I found out that Johnnie died while I was speaking. I knew it. I felt him.

Johnnie Pipkin was my second AIDS death. My first was actor/singer Stephen Pender earlier that year. I was with Stephen when he died. I had stayed with him all day and night as his friends shuffled in and out of his room in the Betty Ford wing of Cedars Sinai Hospital. Stephen was my 12-Step sponsor-and miraculously, he remembered me from my first sober days at the meeting behind the red door in Greenwich Village. Not letting him be alone when he died was my way of thanking him and all those gay men for being with me as I struggled back from the death of addiction. I have often wondered: why them and not me?

Stephen Pender died on March 15, 1986. He was 35. That year I walked in APLA's AIDS Walk. I cried the whole way. I cried for Stephen had just appeared on "Hill Street Blues" and there was talk of bringing him back - perhaps the start of his TV career after two musical gigs on Broadway. I was part of a cadre of friends who cared for Stephen when he was sick - cleaning his house everyday, cooking macrobiotic food, trying cantina crowd(Adj)bwalternative spiritual exercises, which he didn't really care for - 12 Step spirituality was just fine by him - and trying to hug him and not jostle the Hickman catheter in his chest. All the while we knew he was slowly slipping away and there was nothing we could do to save him.

On that first walk, I cried for the loss of Stephen and my own powerlessness. I cried for the loss of Johnnie who was slipping away right then - but would want to hear all about the AIDS Walk - who was there, what happened, what did it feel like being with so many other people going through the same thing.

It felt like love. It felt like that common bond forged from grief and anger and loss and knowing that the strangers next to you also knew deep in their souls what a breaking heart feels like, what powerlessness feels like - and that irony of irony - also knew that the deeper that pain is, the more room there is for love.

It felt like the Age of Aquarius was upon us. The age of peace and understanding that so many of us marched and sang about when our loved ones were being drafted to fight in the Vietnam war, some coming home in body bags, some mentally and emotionally lost - all changed.

At first, the leave-taking was similar - saying goodbye to friends on the tarmac as they prepared to fight in an overseas war they didn't believe in - and saying goodbye to loved ones as they entered hospitals for the final time.

wheelchairBut AIDS was different. Now my friends were literally dying in my arms. A generation of friends and peers. And those walking beside me knew that deep love and loss, too. It was the kind of shared marrowbone knowledge that could heal the world, if only the world would listen.

But the world didn't listen so we walked. And our walking lead to courage to face and help another friend dying. And our visibility was a proud, defiant stand against the Jerry Falwells and Ronald Reagans of the world who - in the name of God - condemned us all.

And the AIDS Walk allowed us to fight back with our hearts. In the early 1990s, famous PWA and singer Michael Callen would send us off with his song, "Love Don't Need a Reason" - a song about loving authentically, without shame. The chorus goes:

0011'Cause love don't need a reason

Love don't always rhyme

And love is all we have for now

What we don't have is time.

Michael sang that song at the 1993 March on Washington, though his lungs were filling up with KS. He died that December 27 - just hours after I left him - I was one of his friends and care-providers.

These days, Michael might be best known as the guy singing the falsetto in "Where the Boys Are" in the AIDS movie "Philadelphia." That's where most of America learned about AIDS - and in particular, KS, Kaposi's Sarcoma. Those are the purple spots the Tom Hanks character revealed on his chest during the courtroom drama.

danny-warnerWe knew about KS. In fact, just as the wasting syndrome taught all of us how to let go of "body image," so KS taught us about letting go of vanity. And the act of letting go of all those preconceived notions of what a gay man should look like - and be - was itself a tremendous act of spiritual courage. Men such as Danny Warner, one of the co-founders in 1983 of the now defunct LA Shanti in West Hollywood - one of the world's first HIV/AIDS organizations - shucked shame and went to work and events with KS marks very visible on his face.

Right now, as I prepare to post this, those 30,000 people are walking through the streets of West Hollywood and LA. They are walking for their own reasons. But they are also walking for Johnny Pipkin and Stephen Pender and Michael Callen and Danny Warner - and for people like me who came out because of AIDS, who learned to love so profoundly because of AIDS, and who still grieve privately in small and grand ways.

AWLA 08The APLA AIDS Walk today is historic - it marks the 25th anniversary of the event. It also marks where we've been - in the spiritual vanguard, the artists paving the yellow brick road for the Age of Aquarius.

But we must heed the echo of those footsteps, for once again, HIV is on the rise among young gay men, while homophobia and stigma still clasps a stealth grip on women and people of color.

So let the cheers of supporters and the sunshine of truth urge on the walkers today. For tomorrow, the money they raise might save a life and empower a new generation to ACT UP! FIGHT BACK! STOP AIDS!

(Crossposted at LGBTPOV.com)


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A beautiful and moving post. Thanks for this, Karen.

I agree with Abby. What a beautifully poignant, sad yet inspiring post. A great tribute to your friends, Karen. Thank you from the bottom of my heart. I'm so glad you post about this. APLA reached out to me to cover the Walk but couldn't live up to my commitment because I have several important deadlines to meet. I regret it now. I didn't know how to deal with the 4th Anniversay of Marc's death from AIDS. All my activism as it relates to HIV/AIDS is dedicated to his loving memory. He was my first Aids death. I couldn't believe it happened to me. Marc had just turned 40 when he died from PCP Pneumonia. A beautiful and gentle soul who loved unconditional, gave with sincerity and lived his with integrity. He taught what it means to be color-blind. His quote was "When I close my eyes, I see beauty in all the colors of the rainbow!"

Michael @ LeonardMatlovich.com | October 19, 2009 7:52 PM

Thank you, Karen, for sharing your memories of those days when death seemed around every corner, and so many lesbians were the primary bridge to loving care for so many gay men, and both gay men and women often became the only family those dying had.

Ironic timing that you would bring up the magical Michael Callen as I'd just used another of his songs, edited with speech excerpts by Leonard Matlovich, for the DADT Protest and Memorial to Leonard in DC the day before the National Equality March. "Love Worth Fighting For" was apparently recorded during Michael's last days, and released posthumously. I hope this mix brings you fond memories and everyone a bit of inspiration.

http://www.leonardmatlovich.com/images/Love_Worth_Fighting_For3.mp3

Thanks for your lovely comments.

Sometimes it hurts to remember - but then, it's the hurt that comes from all that love.

And most of the country has no idea what we've gone through!

Karen,

Yours was a beautiful post and remembrance. How very honored you must feel to have shared so very much with each of the individuals whose lives you so deeply touched. And, how fortunate they were to have you by their sides.

As survivor, a PLWHA or PWA, and a 64 year old gay man who has also lost many, many loved ones and friends, I just hope we can get the message out to the youth that HIV/AIDS is still an incurable disease. There is absolutely nothing about the disease and the toxic medicines that make HIV/AIDS romantic or glamorous or a "walk in the park." A cure is not likely in the next decade and AIDS still destroys ones hopes and dreams, both personally and professionally.

Thank you for the post and for the love you have shared with so many.

What a beautifully written piece. Thank you.

Kergan Edwards-Stout | October 20, 2009 11:26 AM

Thanks so much for your wonderful rememberance... I worked at APLA for 4 years, volunteered for years prior, and met my partner Shane while working there. Shane would later die from AIDS/PML in 1995. Having walked and volunteered at many of the AIDS Walks, I too treasure that sense of community, bonded together by love and shared experience.

Your piece brought it all back. Thank you.