Posts tagged “crisis

How I Survived a Plague

Kergan Edwards-StoutI survived a plague.

It once seemed unfathomable I’d ever write such words, let alone experience just such a cataclysmic event.  Growing up in a bland but largely protected Southern California suburb in the 60s and 70s, I had no clue what lie ahead.  Acquaintances, friends, co-workers, and lover, dead.  A myriad of others infected.  Who could have foreseen the years of public apathy, private sorrow?  Emerging decades later into a world where few seem to acknowledge the experience occurred, let alone the toll taken.  Somehow, though, I stand here today having survived the AIDS epidemic, and I still marvel at how.

In 1981, when what would eventually become known as AIDS peripherally entered our national consciousness, I was 16 years old.  I’d known I was attracted to other boys as far back as I could remember.  Hitting sixteen, I was able to put my driver’s license to good use, beginning weekly sojourns to a bookstore in neighboring Long Beach, CA, where I’d spend my allowance on LGBT fiction, The Advocate, and gay porn. This avid need to read and learn would serve me well, as I distinctly recall that moment when I first saw a headline about a gay cancer, attacking the New York community. KerganHawaiiIn July 1982, at virtually the same moment the disease was being renamed, from GRID (Gay-Related Immune Deficiency) to the more accurate AIDS (Acquired Immunodeficiency Syndrome), I was experiencing my first sexual encounter, on a family vacation to Maui. Lying on a hill overlooking a beautiful, deserted beach cove, I finally gave myself over to the stirrings I’d long felt. Even as this older stranger initiated me into the ways of gay sex, I was cognizant of the disease attacking gay men, fully aware of the wolf at the door. Moments after finishing, I pulled on my bathing suit, quickly hurrying around the corner of the cove, only to bump into my sister, on her way to find me. The realization that mere seconds separated me from discovery introduced a gnawing element of fear to the moment. But that factor of fear may very well be the reason I’m still here.

How to Survive a PlagueWith the release of David France’s Oscar-nominated documentary How to Survive a Plague, now on DVD, I was immediately reminded of those many years and how, for me, sex and fear became — for better or worse — inextricably intertwined. The film skillfully communicates the era’s panic and anger, as well as the resolute determination of the LGBT community to combat the virus. As I watched it, long-forgotten voices and faces materialized, transporting me to a time in which I often felt as if engaged in a secret war.

I was reminded of James, so closeted that even a meal in public was conducted in whispers. I remembered hushed conversations about who had “it;” the line between the “have” and “have not’s” never more apparent. I thought of those awkward dinners where my date would reveal his sero-status, and I would attempt to finish the meal pleasantly, as if that news hadn’t really mattered. And I remembered the first man I personally knew to die, always-smiling Jon, who went so quietly, few even registered that he was gone.

Today CondomsAs a youth, growing up, sex had been labeled both a sin and something to treasure, and these warring contradictions, added to the lessons learned from my dysfunctional family makeup, bore in me a sense of prudery. Mix that prudishness with a lurking transmittable disease, and my sexual awakening proved not the spree of abandon I’d long imagined, but instead a series of battles, each encounter fraught with the fear that HIV could enter my body at any time, at the slightest provocation. This led me to study everything I could about the virus, to fortify myself. This quest for knowledge, however, proved difficult, as each news account seemed to give varying and often conflicting instructions. It can be spread through saliva. No, it can’t. They’ve discovered a drug. But it doesn’t work. It can’t be spread through oral sex. No, wait–it can! No, it can’t! A cure is coming. No cure to be found.

Each sex act became a scientific experiment. If one condom was effective, would two be even better? Am I using the right lubricant? What is nonoxynol-9? Is microwavable plastic wrap the preferred barrier for rimming, or non-microwavable? Such questions made it difficult to lose myself in the moment, but they also allowed passion a momentary respite, providing a window in which to turn my hyper-vigilance into action.

Desperate at seeing my community under attack, I found myself at AIDS Project Los Angeles, first as volunteer and later as staff, where my efforts centered on HIV prevention. It was my goal to keep other gay men HIV negative, but even that was fraught with uncertainty. We acted as if shamans, sprinkling our mystical educational nuggets across the landscape, but we were more used car salesmen than anything, selling the masses education we didn’t really believe in, with few of us actually practicing what we preached. We advocated using dental dams or plastic wrap for rimming. Finger cots or latex gloves for ass play. We preached using condoms for oral sex, and pretended that the flavored lubricants we hawked actually enhanced the act, as if everyone wanted to taste synthetic strawberry instead of cock.

Sex EssentialsWe made every effort to keep our messages “sex positive,” to ensure we didn’t add to the years of shame gay men had suffered, being made to feel less-than. While fear had proven an effective deterrent for me, “scare tactics” were frowned upon. Marketing campaigns depicting those ill or dying was forbidden, so as not to offend those with HIV, or to imply that death was a foregone conclusion. Instead, we repeatedly insisted that not only was safer sex hot, but it could be even hotter than sex without condoms. As if anyone believed it.

To sell this vision, we created workshops around enhancing intimacy and building self-esteem, the theory being that by feeling better about oneself, more care would be taken around sexual health. If you care about yourself, you’ll use condoms. But that message was faulty, as the reverse would also be true: If you aren’t using condoms, you’re an unfeeling asshole who doesn’t about anyone, especially yourself.  Which led men to again feel shame. Guilt trips are rarely effective.

As months became years, what began as a quiet war eventually grew to a loud roar. Nights in West Hollywood were an endless cycle: handing out condoms at bars, engaging in street protests, attending meetings for QueerNation or ACT UP, and leading courses in safer sex. We screamed until hoarse and marched until we couldn’t stand, then went out dancing all night and had as much sex as possible. I recall seminars such as Marianne Williamson’s A Course in Miracles and Louise Hay’s Hay Rides; more than once wondering why I was there. Many of those attending were HIV-positive, searching for healing. I was there because… what? Was I seeking community? A sense of belonging? To cruise hot guys? Or was I searching for a cure for what ached in my soul?

Shane Michael SawickUltimately, however, why I was there wasn’t important. The important thing is that I was there.

Shane Sawick was HIV-positive when we met, with a t-cell count of less than 200, which technically meant that he had AIDS. As we began dating, technical became actual very quickly, and within two years, he was dead.

When I’d first heard through a friend that Shane was interested in me, I was flattered, but didn’t give it much thought. He was HIV-positive, after all, and while I acted like it didn’t matter, it did. There was little hope back then, and I knew what the road ahead held. I had no desire to go down that path; I was afraid. Not for my physical health, as by then I was as knowledgeable as most doctors, but I feared what such loss could do to my soul. How can one begin to indulge in loving fully, knowing there is an expiration date? Why experience what you know will be fleeting? And how can you ever move forward again, having loved and lost?

The idea of a relationship with Shane scared the shit out of me, but I knew I had to face that fear, however messy. I’d beaten my fear of infection through education, and thought I might beat my emotional fears by confronting them. I chose love, in all its complexity, and found myself rewarded. Connecting to another, giving fully, putting his needs ahead of my own — these molded me into the man I am today. Experiencing horrific pain and sadness through his death and that of my friends created shadings within, deep pockets of understanding, ultimately making me a better human being, partner, and father.

Russ, Kergan, Mason and MarcusThroughout the crisis, I met countless number doing everything possible to educate, empower, and eradicate a deadly disease, while a much larger number of people did nothing. Those of us engaged in the fight might not have done everything we should have, or could have, but the mere act of doing is what kept me sane, and maintaining a healthy respect for the disease kept me HIV-negative.

Love, mixed with more than a little bit of fear, is how I survived the plague.

Kergan Edwards-Stout’s debut novel about one man’s battle with AIDS, Songs for the New Depression, was winner of the 2012 Next Generation Indie Book Award in the LGBTQ category, shortlisted for the Independent Literary Awards and named one of the Top Books of 2012 by Out in Print and others.

Photography: Kergan Edwards-Stout  as a child and in Hawaii (provided by author); Paul Staley (How to Survive a Plague); Kergan Edwards-Stout in a condom ad (Today Condoms) and performing in an AIDS Project Los Angeles safer sex education campaign as Biff Boffum, to Lawrence Jurado’s LaToya Latex (Ed Freeman); Shane Sawick (Ed Freeman); the author today with his family, Russ Noe, Mason and Marcus Edwards-Stout (Sara+Ryan Photography)

Cross-posted on Huffington Post and LGBTQ Nation.


It’s World AIDS Day. Does Anyone Care?

On March 5, 1995, the day I turned 30, I admitted my then-partner Shane Sawick into the hospital.  He would not come out alive, dying just two weeks later, on March 22.  While AIDS was the war he battled, he was ultimately done in by a skirmish with PML (Progressive Multifocal Leukoencephalopathy), a rare but usually fatal disease, which quickly took away Shane’s ability to speak, move, or even blink at will, though his brain continued to think, and process, and feel.  It was devastating to watch a loved one undergo such a debilitating experience, and yet that act, of being both lover and caregiver, thoroughly transformed me as a human being.  Indeed, I would not be the husband, father, writer, or person that I am were it not for that period of crisis during which my partner and friends died.  As we head towards World AIDS Day, I find it perplexing that few seem willing to embrace, or even mention, the epidemic which so greatly impacted and altered the LGBT community.  What is it about that era that frightens us so?

The easy answer might be that disease and death make people uncomfortable, which, to some degree, is understandable.  Prior to Shane’s death, my best friend of eight years and I were inseparable (I’ll call him Pete.)  At the time, I couldn’t have imagined a better friend.  Pete made me laugh, kept me company, and ushered me through my West Hollywood “coming out.”  Once Shane got sick, however, Pete disappeared.  He never called, or came to visit us in the hospital, despite knowing that I was there 24/7.  Whenever queried by friends as to his absence, Pete would say, “Oh, you know–me and hospitals.  I just don’t like the idea of sickness.”

It wasn’t until the day of Shane’s memorial that I next saw Pete.  He came up, noting “Great service!,” before the next words came out of his mouth: “Wanna hit Happy Hour later?”  Needless to say, I chose to end that friendship, as well as others in which people could not grasp the emotional magnitude of what had happened to me, and others like me.  The depth of my experiences caused a change within, which required a new support system willing and able to tackle the “hard stuff,” no matter how unpleasant.

For some, the era of losing friends and loved ones has been difficult to revisit, due to the emotional toll taken.  Many have gone to great lengths to separate themselves from the pain, moving from the most-hit urban centers to smaller, more rural towns.  Others have gone into emotional hiding, losing themselves in drug or drink, or in simply shutting down, so as not to feel the ache of such loss.  And some have, by necessity, focused on rebuilding their broken circle of friends.

New causes, such as marriage equality, have replaced AIDS as our community’s priority, and it is hard to argue that rallying for wedding cake isn’t more fun that protesting for HIV drugs.  Still, we should not have to choose between the two.

These days, activism for many means little more than clicking “like” on a Facebook post.  While thousands stepped into the streets in the aftermath of Prop 8, we’ve not seen anything on that scale for HIV/AIDS in years.  At what point did we become complacent?  Is having a drug that makes the disease “manageable” really all we want?  What happened to a cure–or a vaccine?

Today, people still die from AIDS.  While drug advancements have substantially decreased that number, it has also created the false-belief that contracting the disease is essentially meaningless.  To some, taking one pill a day is an easy trade-off to having to wear condoms.

Most disturbing, however, is the sheer number to whom AIDS just doesn’t matter, having relegated it to a page in history.  When I mention having lost a partner or friends, I’m most often met with a blank stare or a cursory nod, with no real emotional acknowledgement of what that time meant, and continues to mean.

During the AIDS crisis, the LGBT community rose to the occasion, stepping in to take care of our own when the government, pharmaceutical companies, and other organizations couldn’t–or wouldn’t.  LGBT people exhibited incredible bravery, tackling huge monoliths with acts of daring creativity and passion.  Were it not for our take-no-prisoners approach, we would not have the HIV drugs we do today.

The crisis temporarily brought together both genders, as women stepped into vacant leadership roles and helped those stricken by acting as caregivers.  Today, that gender divide has returned, with little reciprocity from gay men for the causes dear to lesbians, such as breast or cervical cancer.  In many ways, we’ve gone back to being strangers, with a debt left unpaid.

Other communities, devastated by tragedy, have managed to turn such markers into rallying cries, and the LGBT community must find a way to do the same with AIDS.  Just as the Jewish people dealt with the Holocaust, and the African American community responded to slavery and the civil rights struggle, so too must our community find a way to embrace that era, fully honoring both those we lost and what we gained.

For we did gain much.  We learned that, far from being the weak and passive individuals many of us had been stereotyped, we actually had strength, passion, and guts, and we fully demonstrated that to the world.  We took on “the powers that be” and created real, tangible change.  We literally bloodied ourselves for the cause, and yet today, speaking of AIDS feels almost taboo.

Does that have anything to do with the disease being sexually transmitted?  Having worked so hard to combat the myth that being gay is to be “sick,” did the emergence of a sexually transmitted disease take us back to a place of shame?  Does that shame still linger?

To be clear, I am not remotely nostalgic for the days of the AIDS crisis.  I lost too many, and it hurt too much.  But at the same time, I’m thankful that I was able to play a part in helping to educate others about HIV, through my work at AIDS Project Los Angeles.  I’m grateful to my dear friends who allowed me to be with them during their final days.  I’m profoundly changed, for the better, for having ushered my partner Shane to his death.  And I’m forever in awe of the efforts our community took to respond to the crisis in unimaginably creative and lasting, impactful ways.

I just wished others cared as well.

Kergan Edwards-Stout’s debut novel, Songs for the New Depression, was loosely inspired by his partner, Shane Sawick, and his experiences during the AIDS crisis.  It won the 2012 Next Generation Indie Book Award in the LGBTQ category, and was shortlisted for the Independent Literary Awards in the same category.

Cross-Posted on Huffington Post and LGBTQ Nation.