Remembering Stephen Gendin
August 1, 2010
Ten years ago I was getting a few emails from a friend about a special party for a positoid pal who “wasn’t doing too well”. But I couldn’t imagine the Stephen I knew- blue, red, green hair and all- as anything less than vibrant, and at the time, I was wiped out from my own failing health and starting on HIV meds. A trip to NYC just seemed exhausting, I was in no mood to party so I didn’t go…
Six months later, Stephen was dead. And I was in NYC for a funeral. I was heartbroken.
One of the first openly HIV positive people I met, Stephen Gendin offered me a job at his HIV prescription mail order service, prompting a short-lived (uh, 3 weeks I believe) move to NYC that made me realize for the first time in my life that I was operating on very low levels of energy thanks to HIV. It was a tough pill to swallow. One night, as I told my boss and friend that I was packing my bags and heading back to Virginia to focus on my blog and sleeping schedule, he told me there was another way.
He asked if I ever thought about starting on HIV medications.
Stephen’s hope for survival rested in the advent of new medications. He was a longtime activist, the get-in-the-street and get arrested kind, the kind that are embedded in the AIDS community’s history and identity as being responsible letting drug companies and the feds know that people were dying. He’d signed up for drug trials, used his own body to further research, and was always looking for the next miracle drug.
As we sat on the steps of the old Poz office in the West Village that night in 1996 one of us was hopeful, the other scared shitless about all these new medications. In the field of hemophilia treatment, miracle drugs were the reason why I had hep B, C and HIV. The reason why I was tucking tail as the going got tough. I didn’t make a big deal about how I became infected, and looking back I don’t think I could articulate my fears about the HIV medications even as I was showing the first signs that I needed them.
To his credit, Stephen kindly accepted my resignation and refusal to give the pills a try. He was deeply confused why a 21-year old would choose to return to small town Virginia when he could start meds, get some energy, and pursue a new life in the city. But he was a friend, he said his peace and let me go in peace- it was a beautiful moment I’ll never forget, probably the defining moment of our friendship.
Most of my memories of Stephen are at Poz, which he helped found, or at his former company Community Prescription Service- the entire staff comprised of people living with HIV. I recall tooling around together at a few Poz Life Expos (where the picture above was taken) and I’m glad I kept in touch with him after I left NYC, embarrassed by my lack of staying power at the job he’d so kindly presented to me.
In 1999 when I decided to start medications after my failing health left me with no alternative, I let Stephen know, and he never said or implied that he told me so. He just told me how happy he was for me on all fronts, most excited of which was the fact that my new girlfriend, Gwenn, had recently moved in with me.
Looking back, I envied Stephen’s easy style, and was honored by his friendship and how he showed me that HIV- and people living with it- could be cool as hell. I miss ya buddy, a few years was not enough to know you, but I’m glad I got them. You were, and will always be, a huge influence on this little positoid’s life.
Positively Yours,
Shawn
To learn more about Stephen Gendin, check out Poz Magazine’s October 2000 memorial issue of the magazine in Stephen’s honor.
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My Reputation Buried By A Tweet?
July 2, 2010
I’ve worked hard to be, if not a respected voice, at least a voice of some reason in the AIDS community. I know, at times, I come across as a bit shameless. But hey, considering the shame so many who live with HIV- in silence- feel, I just consider myself a pendulum of sorts that swings positoids out of the shame zone.
The other night, I decided to play a joke on my friend, Andy Deane. Even though he’d just plugged my book on his Facebook page. See, Andy is the lead singer of Bella Morte and horror novelist. So I thought it would be funny if I posted a fake Retweet; for those who don’t know about Twitter, when you RT (Retweet) a message, you’re taking someone else’s post and then copy/pasting it to your network. A little “RT” appears before the post, just so people know it’s not your words, but those of whomever’s twitter address appears right after the “RT”.
Sounds simple, right?
Well, even if you don’t get the explanation, you’ll enjoy my joke. I posted a fake RT message, then plugged in Andy’s twitter address after it. Here’s what I posted:
RT @Andy_Deane ain’t gonna lie- just got home from midnight viewing of Eclipse. Cried as I realized this was the best movie I’ve ever seen. 4:46 AM Jun 30th
Not only that, I encouraged my army of 921 loyal, obedient Followers (Twitter’s word for Friends, basically people who want to read your brain farts) to RT that message, letting them know it was bogus. 2 complied with my command. I don’t exactly have a David Koresh hold on my followers just yet, but I am working on it. Anyway, I went to bed proud of my handiwork, figuring I’d ruined a friend’s professional life in less than 140 characters, the Twitter limit for posts.
When I woke up, I was horrified by what I saw: a Retweet from Andy Deane. A “RRT”, as I’ll call these from now on- a Retaliatory Retweet. He posted: RT @ShawnDecker I’ve been faking this HIV thing all along. But hell, it got me a book deal & a hot wife with serious jugs, so whatever. 1:44 PM Jun 30th
I was under siege- there is no more damaging claim that someone could make against me than to have the world question my HIV status. Andy knows this, he attacked my weak point just as I’d attacked his- this was war. But I was now throwing pebbles at a tank and realizing that this is now my equivalent of Obama’s “birthers” scandal. You know, all those claims that Barack wasn’t born in the United States by (mostly) people who don’t think Hawaii is part of the United States.
Just as Andy faces questions as to whether he is on Team Edward or Team Jacob, I also face the prospect of people picketing my HIV educational talks with “SHOW US YOUR HIV TEST RESULTS!” signs. Worse than that, I had to come to terms with the painful fact that Andy, for once in his life, had bested me.
To stop the bleeding, I’m going to have my doctor admit on camera that I am indeed HIV positive at my next doctor’s appointment, which is this month. That means that, yes, another LabTest Contest is on the way. In the meantime, I will do my best to make amends for my vicious, unprovoked personal attack. Andy Deane has not, and will not likely ever see, any of the Twilight movies. He loves gore in his movies, and is way more into zombies than vampires anyway.
As I work hard to rebuild trust- both with Andy, people who have read my book, heard me speak and called me a friend- in light of this nasty, nasty rumor that’s being circulated… ah, I’m laughing right now. He got me back big time, a serious sack tapping that, I have to admit, I instigated. In all the years since I opened up about my status, and my friends have known that they can make AIDS jokes with me standing in front of them (hell, they are usually directed at me, in good nature of course), I never thought the best joke of all would be that I don’t have HIV.
Perhaps someday, right?
Positively Yours,
Shawn
Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com Also check out the lovely Gwenn’s Fashion/Coffee Blog
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
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Introducing The Confusinator
April 16, 2009
Apparently there was a lot of muffled laughter about The Swatchmen, a superhero group I will lead into battle the day after I am cured of hemophilia. (Read the original blog here.)
Well, the Swatchmen Facebook group is bursting at the seams with 48 members, one of which already has their alter ego ready to go- The Confusinator!
I imagine we’ll break the 100 mark by the time that cure rolls in.
You may want to join us. I have a lot of pent up thickblood envy that I am planning on unleashing once I am cured. So join or, as the Confusinator would put it, “Consequence the suffers!”
In all seriousness, who knows when a cure for hemophilia will happen? The science will take time, I’m sure. I joke about being cured, but I have mild hemophilia, and stay away from the temptation of joining the local rugby league, so the impact of the disease on my adult life is minimal.
Still, the enormity of the advances made from just before I was born to the potential of what awaits in my lifetime is a pretty wide swing. From people being able to manage bleeding episodes by infusing concentrated blood plasma, in effect going from a “victim of disease” to a superhero (The Infusinator, anyone?), to the horrific consequences of HIV infection… to being cured.
That’s a lot of science, human error and human triumph in the story of those who have lived with hemophilia or “thinbloods”, as I affectionately refer to those with bleeding disorders. (Shout out to my peeps with Von Willebrand!) And I eagerly await the day when there is a cure, but I hope that lessons learned are never forgotten.
If they are, then maybe someone will have to answer to myself, The Confusinator, and lots of former Infusinators.
Positively Yours,
Shawn
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It’s Official: Erin Weed Joins My Gang
March 18, 2009
Everyone thought I was kidding with the whole Swatchmen thing. That the idea of starting a gang the day after they discover a cure for hemophilia was merely another flight of fancy on a blog that’s been plagued by flights of fancy- or, even better- fantasy.
Well, I’m just planning for my future, that’s all. And when self defense speaker Erin Weed was presenting life-saving tips at a nearby college, I traveled to present her with an opportunity to be the first to join the Swatchmen…
Innocently enough, I pose with my friend. No agenda, just friends catching up… her guard down, I casually mention the Swatchmen thing, and laughingly ask if she’d join up.
“Sure, sounds fun!” She said. Then I asked if she’d shake on it.
At first Erin looked worried. Then, as I started to explain all of the asses that have gone unkicked in my life due to the physical risks of taking the low road, she began to understand. See, people think I’m a nice guy for being level-headed, but there’s a warrior inside… yearning for combat. And, once I’m cured of hemophilia, that warrior will be turned loose on an unsuspecting world!
Positively Yours,
Shawn
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On Facebook? Protect yourself from Future Thickblooded Shawn by joining the Swatchmen group.
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