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November 28th, 2013

Once, When We Were Heroes

My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.

DickEmilEmil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.

It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.

Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.

Richard TodayThere were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.

There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.

There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.

There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.

There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.

hospital-wardMy best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.

Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.

Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.

There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.

There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.

Binder5 - CopyJeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.

He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.

“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”

“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.

“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.

“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.

“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.

There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.

Grab Mark InterviewThe truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.

He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.

To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.

But once, there was a time when we were heroes.

(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)

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PLUS…

knowpozguys“Know Stigma” (I hereby pronounce “stigma” the Word of the Year) is a terrific site devotes to photos and video that challenge our attitudes towards one another as gay, straight, femme, old, poz guys, etc. There are some really intimate, honest videos with people discussing the impact of stigma on all aspects of their lives. “We want to create a conversation around how we treat each other as gay, queer, bi, trans, and straight men,” says their site. “Like everyone, we have our biases and prejudices. Many of us are made to feel invisible because of age, body type or skin color. How can we say what we want without hurting others? How do we imagine our actions and words might make someone else feel?” Check it out.

stigmagrabAfter a lot of talk about HIV stigma, there is now a project in the United States that wants to actually quantify it and address it through leadership by people with HIV. “The People Living with HIV Stigma Index” has been launched in dozens of countries but only now has received funding to implement it in the U.S. It measures HIV stigma in the lives of people with the virus, and does so by training and employing people with HIV themselves to conduct the surveys. Watch a video of Laurel Sprague of the Global Network of People Living with HIV discussing stigma and this project with Eric Sawyer of UNAIDS.

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3 Responses to “Once, When We Were Heroes”

  1. Steve Craftman Says:

    November 28th, 2013 at 11:21 am

    I think we still are Heroes – a different landscape, but we made it through the wall that Bowie saw. (Strange that Bowie contributes two songs to my HIV journey: Five Years, because that’s all we had, and Heroes). It’s just our job description changed: from screaming blue murder to get drugs released ahead of time, we’ve gone on to “if I can do it, so can you”, especially for people newly diagnosed. My little passenger is part of my life: it doesn’t define my life despite what it’s done to wreck it.

    It’s weird to overhear gossip about yourself, but it happened to me a little while ago. I blush as a write this, but the tone was admiration that I’d carried on for so long (I seroconverted in 1980) that I could cope with the thirty or so pills a day that keep me going, that (cue orchestra!) I’m still here after thirty odd years.

    Some of us might need the help and support we gave others in the eighties, but how much of that is HIV and how much is aging? And isn’t aging a triumph!? I expected to be dead well before I hit forty. Instead I’ve lived more than half my life with my little passenger. The Uk’s National Long Term Survivor Group calls its weekend retreats “Living Proof” which is exactly what we are. Sometimes broken and bloodied by HIV, but nevertheless, Living Proof.

  2. Jeff Says:

    November 28th, 2013 at 12:21 pm

    Is there actually any point at scratching at the scabs of healing wounds and making them bleed every year on 1 December?

    What purpose does this serve other than to re-live the distress of those years and hold up the scars for public display like some religious maniac displaying the stigmata?

    In those days there was no hope, now there is, how relevant is what happened in the 1980′s and early 1990′s with what happens now when we are talking about a condition that is, far more manageable than several other chronic illnesses?

    Stop scaring the babies with horror stories. The past is past and let the past bury its own dead. As a long term survivour I have my own horror stories but I do not propose to share them.

    (You would appreciate my posting from only a few days ago, “Stop Bludgeoning Young Gay Men with Our AIDS Tragedy.” But, as I say in that posting, there is a difference between honoring our past and using it as a blunt instrument. This World AIDS Day posting, I would submit, belongs in the former. Why? Because it doesn’t judge current behaviors or instruct younger people on what they “should” do. It only honors the work of many people, living and dead. — Mark)

  3. Denis LeBlanc Says:

    November 30th, 2013 at 8:40 pm

    I shared on Facebook with the following introduction:

    It’s Mark King for World AIDS Day, but it could well be me stating: “My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague. He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him”.
    I lost 36 people in 1989 alone, and just a few less in 1990; I lost friends, lovers, people I worked with in gay lib, people I once lived with; we lost so many and on World AIDS Day, I remember them. I know how much I miss them and loved them. The gay lib movement changed forever, lost too many intelligent, caring, hard working, imaginative, fun and sexy bright lights.
    Thanks for helping me remember them.
    Thank you so much Mark.

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