Merce- Original HIV Comedy Series!
July 28, 2015
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…
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!
Stephen Gendin, 15 Years Later
July 19, 2015
(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.
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.
The Big 4-0 is Here!
July 16, 2015
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.
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
30 Years to a Functional Cure?
April 29, 2015
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?
World Hemophilia Day
April 17, 2015
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.
MTV’s RE:DEFINE Rocks Dallas and HIV
April 13, 2015
Full dislosure- I’m a big mark for the MTV Staying Alive Foundation. They fund grants worldwide to provide young people with the tools and resources necessary to implement HIV prevention plans in their communities. You can learn more about them here.
The Staying Alive Foundation’s continued existence is dependent on public funding, and this past weekend, along with their partners at The Goss-Michael Foundation, they raised over $2 million at the annual RE:DEFINE fundraiser in Dallas. Georgia Arnold, executive director, shared some photos on her Instagram account (which I cobbled together below!)… enjoy!
Big thanks to everyone who helped make the event a success, including artist Brian Kokoska, whose work was available in the art auction. And Julie Allen, who conceived the idea for RE:DEFINE.
Up next on MTV Staying Alive’s fundraising calendar? Found in London on May 14, with performances by Tinie Tempah and Tallia Storm.
Ryan White, 25 Years
April 8, 2015
Ryan White passed to spirit on this day 25 years ago- he was 18 years old, yet in that short time he educated millions of people worldwide about how HIV was and wasn’t transmitted. Born with hemophilia, Ryan contracted HIV through his blood product treatments in the 1980s, when screening methods were haphazard at best. After being kicked out of his school, he and his mother waged a very serious and public campaign against HIV and ignorance.
Ryan, to put it bluntly, was a rockstar.
I know the impact he had on my family- my mom saw him as a third son of sorts, following his medical ups and downs in the media. I emotionally distanced myself from him when he was alive, mainly because his story hit a little too close to home for me… hemophilia, HIV, getting kicked out of school- I never thought I would go public with the kind of details that he never blinked an eye in sharing.
At 20, when I found my own educational voice, I allowed myself to feel that connection with Ryan White that was always there. I was immensely proud of the path that Ryan had paved- and saw the need, six years after he passed, for the work to continue. It sounds kooky, and a lot of factors play into these kinds of things, but I give him a nod and a fistbump for introducing me to Gwenn, my partner of 16 years now. We met at a talk given by his mother in 1998… I always think Ryan somehow positioned us to be there, standing in line waiting to talk to his mom, close enough to notice one another…
Of course, my personal life would never be the same. And my proudest- and most effective- work as an educator has been with Gwenn, standing together as a couple in a healthy relationship.
Thanks, Ryan. You are never forgotten.
A New Wish?
March 25, 2015
25 years ago I met Depeche Mode. I was 14. Diagnosed with HIV for three years- but living with it for at least five years at that point- I was already past my expiration date according to my initial prognosis.
When Ryan White passed in 1990, my mom was confronted with her own fears of losing me. She contacted the Make-A-Wish Foundation, and I was an eligible candidate. For about a year, Depeche Mode had provided the soundtrack to my life, so the decision on what to do was easy. Along with my best friend, I was granted backstage access before a show on the World Violation Tour (in support of Violator, the album that birthed Personal Jesus AND Enjoy the Silence).
It was awesome.
25 years later, and my life with HIV bears little resemblance to then. Today I speak openly about living with HIV with my partner, Gwenn. I take my HIV meds, eat well and drink lots of water. Back in 1990, there weren’t any effective treatments, and I’d never brought up HIV with my friends, not even the one whom I invited to meet Depeche Mode with me…
So, my question is: in outlasting HIV and my prognosis, should I be eligible for another wish? Even though I am pushing 40?
If so, my wish is that a cure for HIV is found. Larry Kramer recently spoke out, calling for the push for a cure and railing against the status quo of what is the living-with-HIV experience for those with access to treatment. I agree with Larry, and it seems like hardly a month goes by without a promising article on new research that- if properly funded and executed- could lead to an end to this viral reign of terror.
But it can only happen if we speak out for its need. Treating HIV is great- I’m all for better treatments with fewer side effects and access to HIV drugs for everyone living with HIV. But the endgame should be complete eradication.