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I've written extensively about how much The Real World San Francisco influenced me- you know, the season of MTV's reality show that featured Pedro Zamora and his life with HIV. I wasn't talking about HIV openly when that aired in 1994. I loved seeing Pedro meet new friends and speak so openly about his experiences.

One of those new friends was aspiring cartoonist, Judd Winick. When he defended the comedic merits of The Three Stooges, I took notice. He seemed like a nice, thoughtful, guy. Back then, The Real World would cast people like Judd, who was hustling to get gigs and find love, which he did with housemate Pam. How Judd reacted to Pedro's HIV status, with warmness, care and gentle curiosity, really made an impression. When I finally opened up and talked to my friends about HIV, they supported me in the same way.

After Pedro's passing, Judd dedicated his time to step in and fill Pedro's speaking engagements, educating about HIV and talking about his friendship with Pedro. One of my favorite books is his graphic novel, Pedro and Me- it really showed me what the experience of The Real World was like, behind the scenes. The book brought me to tears.
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Judd has used his platform to explore themes that are of interest to the LGBT and HIV/AIDS communities. His graphic novel, Hilo Book 1: The Boy Who Crashed to Earth is out now. Seth Meyers says Hilo is "a perfect book for any kid who ever needed a friend and then had one with superpowers fall from space." Big thanks and gratitude to Judd for showing me that friends would be there to support me when I was ready to let them in.

Positively Yours,
Shawn


Georgia, Gwenn and me in 2010

Georgia Arnold is the Executive Director of the MTV Staying Alive Foundation, which fights HIV globally by funding youth-led programs. Over the last few years I've been fortunate to see what they can accomplish firsthand, since I'm on the SAF Board. (Full disclosure- I help good people help good people!)

Now, Georgia would be quick to say the grantees who put in the grassroots work in their communities are the heroes. And, well, who could argue with her? Meet the heroes of Staying Alive that protect their communities with innovative HIV education efforts tailored to their own communities needs.

The team that keeps things moving at Staying Alive are incredible. And the tireless efforts of Georgia are an integral part of what makes the foundation so effective. I'm proud to call Georgia a hero in the fight against HIV, but most importantly I'm honored to call her a friend, too.

Keep up with Georgia's travels and MTV Staying Alive by joining their email list. (They won't bombard you, about one email a month)

Positively Yours,
Shawn

My blog post about how I learned about the MTV Staying Alive Foundation, from March 2010.
Today marks the 25th anniversary of the Ryan White CARE Act. This federal program has provided so many services to the HIV/AIDS community. Much thanks goes to Ryan White, who passed to spirit in 1990, and his mother Jeanne for their role in changing the way people viewed HIV.

Ryan White's legacy lives on to this day. I still remember the days when I was a scared kid with HIV, intensely secretive about my status. Ryan's journey was quite public from the beginning of his diagnosis, and my mother had every magazine that interviewed him and would watch his TV appearances, where he did his best to disarm fears of HIV transmission.

Here are some videos I've made about Ryan. And a POZ article I wrote a five years ago about the CARE Act.
 
Ryan White's bedroom is on display at the Children's Museum in Indianapolis. Here's a brief tour, a video by me followed by a video by Andrea, curator of the Museum:
 

I animated this video for AIDS Healthcare Foundation, which explains The Ryan White CARE Act and a little bit of Ryan's history:


Positively Yours,
Shawn
The new issue of POZ is out, entitled "Suppression Superheroes". You can check it out by clicking here.

Inspired by this issue, I want to spend the next month highlighting some folks who I deem to be superheroes among us. They'll range from people I've met in flesh in blood, to people who I've merely observed in the stars from my lowly terrestrial perch.

First up is John Oliver. I've been a fan of his since his first appearances as a correspondent on The Daily Show. But my appreciation for John grew beyond his talents as a comedian when he donated his talents to an HIV/AIDS fundraiser (AIDS Walk NY) that my friends and I were participating in 2007 and 2008.

Here's Gwenn fanning out as she introduces John in 2007:
 



On his HBO show, "Last Week with John Oliver", John has incorporated the issue of clean needles into a children's song, and also tackled the issue of sex education in America's public schools. Check out his take on sex ed below:


What makes John Oliver a superhero to me is his common sense, the uncommon ability to use his comedic skills to open hearts to difficult topics and his empathy for man and womankind. 

Positively Yours,
Shawn
Now that 40 has sunk in, and I have recovered from my birthday festivities, I wanted to post an entry about one of my favorite new things: Merce! It's so over-the-top campy and kind-hearted, with a story that is centered around the middle-aged Merce, an HIV positive man living in New York City.

The episodes are short, funny and inspired. And I'm so happy to see a web series focused on a lead character living in today's American world with HIV. Well done, Team Merce!

For those of you who haven't checked it out yet, here's the first two episodes below.

The first episode debuted two weeks ago, and in it the title character, Merce, who is living with HIV in New York City, goes on a date...

Episode 1: MERCE "Tonight at Eight" from MerceTV on Vimeo.

In episode two, Merce has a doctor's appointment. Harboring a not-so-subtle crush on his own personal McDreamy, Merce is disappointed when his doctor suggests that he start working out.


 

Looking forward to seeing what adventures lie ahead for wide-eyed Merce!

Positively Yours,
Shawn

Stephen Gendin, 15 Years

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(This blog post was originally published on August 1, 2010. Today marks 15 years since Stephen passed. - SD)

---------------------------

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.

Also, check out photos from the 10-year memorial gathering in his honor.

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The Big 4-0 is Here!

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Today I turned 40.

In 1975, I came into the world around 1:23 AM. That's a guesstimate. No one was looking at the clock the moment I was born. The family doctor was smoking. My parents had already gone through the birth of one son- two years later they were doing it again in the middle of the night. There was concern that I wasn't crying, so the doc firmly slapped my buttocks with his index and middle finger until my lungs proved their worth and I experienced my first, post-womb WTF moment.

If you're reading this, then you are probably already aware of what my birth brought to the table, medically speaking, for my family. But just in case, here's the run-down: born with hemophilia, and infected with hepatitis B (early 80s), HIV (mid 80s) and hepatitis C (1994) via blood product treatments. It was the HIV diagnosis at age 11 that left my family with the very real concern that I wouldn't live to see the 1990s.

Through a combination of luck, love and timing, I made it. At 40, it's quite possible that I'm only halfway done with this journey. I'm content with each day, month and year I've had. Each decade has brought it's own unique learning experiences. I continue to grow and I look forward to what the next decade has in store. I can say, with confidence, that I've never entered a decade in better health than I do now: physically, emotionally, spiritually.

Of course, like anyone else, I have no idea how much time I have left. But I do know I have enjoyed a lot more time than was previously thought. And that's the greatest gift of all.

Positively Yours,
Shawn

PS... I'll be blogging more about this, but the HIV online comedy series, Merce, debuted today... on my birthday!! Check it out, it's a Summer smash! #Merce
 
June 6. 1990. I sat nervously in a van, borrowed from a family friend for a special journey. My parents, best friend and aunt were aboard. Our destination? A concert about two hours from home, but the ride there felt like it took a day... I was 14, and I was about to meet my favorite band as my final wish.

It's both hard and easy to believe that it's been 25 years since I met Depeche Mode through the Make-A-Wish Foundation. A lot has happened since then... at 14, I was just starting to get interested in playing music. I wasn't deathly ill, but my t-cell count was hovering at a dangerously low level. Back then, I had no interest in talking about HIV. I'd just wait and see what happened... music, to me, was an escape from all of that medical bullshit. My favorite bands spoke to my concerns about my own mortality. Deeply private moments that I cared not to share with friends or family. Through headphones and good tunes, I was able to resolve those feelings.

I'm proud of the man I've become- content in my own skin, happy with my accomplishments and thankful for all of the elements that made my survival possible: a caring family, friends who had/have my back, access to medications when I needed them. And a loving partner in Gwenn.

I'm working on something to commemorate this occasion, a celebration of survival. Something fun for a good cause. But I'll give details later. For now, I just want to reflect on who I was... 25 years ago. Just a teenager with a record in his sweaty hands, waiting impatiently to shake the hands of the folks he'd turned to so many times when it felt like there was no one he could talk to.

Positively Yours,
Shawn

shawndeckerdepechemode.jpg
I followed an internet wormhole to an article that suggested a functional cure could be up to 30 years away. At or least that was the thought of some know-it-all scientist who painstakingly analyzed all of the recent data on emerging treatment options... but what does that poindexter know?

If the good fates allow, that would put me at 69 years old. I'd like to be able-bodied enough to pull off a 69'er with Gwenn when I'm functionally cured, because I'm looking to put the "FUN" in "functionally cured". Plus, my goal is to bookend my life with some HIV-free years. And I'd like that to happen before my golden years.

But, those thoughts aside, I am living my dream right now. I made it to adulthood. I'm staring down 40 this summer and think my 40s will be my best decade yet, and I'm certain that there will be some great advances in treatment over the next decade. I'm no scientist, but that's what my gut tells me- the same gut that says grilled-cheese sandwiches are tasty.

And when your gut is that spot on, who needs the opinion of a scientist?

Positively Yours,
Shawn


World Hemophilia Day

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Today is World Hemophilia Day.

This rare, bleeding disorder has shaped my life in so many ways. As a kid, I was able to enjoy a normal childhood that included baseball, rasslin around with my big brother and the kinds of daredevil stunts that give parent's heart palpitations. It wasn't easy having playtime interrupted by a bleed that required treating, but at the same time the medical condition gave me access to an entirely different social circle- my grown-up friends at the hospital.

Of course, when HIV entered the mix, things got difficult. Unlike hemophilia, which did cause some concerns at school from time to time, HIV brought an entirely new concern. Not just medical, but social ramifications. I was kicked out of school in the 6th grade and had a lot of fallout with friends whose parents wouldn't let me hang out with them anymore. After HIV, hemophilia kind of took a backseat. I was also a lot less physically reckless after the age of 11 (when I was diagnosed with HIV), so bleeds were way less common.

A couple of years ago, I had to play a little bit of catch-up with hemophilia. A new HIV combo caused increased bleeding episodes, which necessitated my need to learn the art of self-infusion. Which basically means sticking myself with a needle. I was a bit of human pin cushion the first few times, but thanks to friends (one a piercer, the other a nurse) I learned the skills to handle the situation on my own.

And now, I feel like I have a good handle on all of my medical conditions. Hemophilia has been rough at times, but I feel like I'm an empathetic human being because of it. Either it's just the precarious nature of having a bleeding disorder, or growing up and spending a lot of time in the hospital, or great parenting... or a combination of all those things.

I wouldn't trade who I am for more clotting factor, but I do believe I will outlive hemophilia. And HIV. They will be cured or functionally cured (I'll be the first to put the "FUN" in "FUNctionally cured", that's for sure) in my lifetime. And the odds of my lifetime being long enough to fulfill that goal have increased dramatically as I've learned more of the ins and outs of living with hemophilia as an adult.

Hope this finds you all well. Big hemo hugs.

Positively Yours,
Shawn


Speaking

Shawn & Gwenn
Since 2000, Shawn and Gwenn have been speaking about sexual health together, sharing their personal story and empowering others to be safe. If you are interested in having them speak at your event, fill out the Contact Us form.
 

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