Until There’s a Cure… There’s The Cure
February 16, 2015
This year Friday the 13th and Valentine’s Day ended up back-to-back. Which, considering how masochistic the emotion of love can be, seems quite appropriate. But, without love, I’m pretty sure I wouldn’t be here. I’m going to write a list of a few of my Loves and, if mine inspires, then take a moment to reflect on your own.
In some particular order….
From meeting Depeche Mode through the Make-A-Wish Foundation in 1990, to learning how to write my own songs as Synthetic Division, music has been a pillar in my life. Last year, I started playing keyboards for my friend, Alethea, in her band Ships in the Night. Most recently, I had the chance to sing on Friday the 13th, when my friends in Bella Morte and The Secret Storm played a show. The opening band, A University of Whales, invited me up to sing “Close to Me” by The Cure. “Until there’s a cure… there’s The Cure!” (Garth McMurray’s brilliant phrasing.)
I’ve always had a sweet tooth. These days it manifests in my daily iced mocha, but the love has been there as long as I can remember. I get the argument that sugar is a drug and we consume far too much of it, even unknowingly. I’m more conscious of that the older I get. And I’m not certain, but before HIV meds were an option, I’m pretty sure that massive Slurpee consumption helped stave off my pet virus…
I still remember my first system, the Atari 2600. And my first game, Berkerk. And I still play to this day. A few years ago, me and my friends even designed little red ribbons for emblems on World AIDS Day…. before going into Halo and mock-killing everything in our path. But it was the thought that counts. And I think about videogames a lot.
They call it sports entertainment. But it’s pro wrestling, and it has been my soap opera for a long time. These days I lament that I’m not writing the storylines. It’s an imaginative world, and when it’s fun, there’s nothing like it. Now that I’m older, I do worry about the head trauma and future health of the performers… at times that does take away a bit of the fun. Ah, why does the real world have to invade our fantasy realms? (Read my POZ column about interviewing my all-time fave, Ric Flair.)
I’ve been fortunate- I haven’t had a relationship end badly. Well, in high school it’s the only way they can end sometimes. But I’ve never had any real lingering resentment for someone who I’ve had a relationship with. Now, I’m glad for every step along the way, from the first peck on the lips in the 6th on… you grow with each experience, and learn a lot about yourself through the eyes of someone who loves you.
My family has always been supportive. I know a lot of people don’t have the luxury of this, and how heavy that can weigh… my medical experiences (and smartass attitude) really put my mom, dad and brother to the test. And they’ve always passed with flying colors.
I’m lucky to have such a loving partner. We’ve been together 16 years, and in that time we’ve dealt with a lot of highs and lows. But the lows are just the things that life throws at you- and it’s so much easier to deal with that when you have someone to lean on. And a shoulder to offer in return.
Of course, there are many more things that I consider loves- but I hope you enjoyed this little peek into some of things that make me tick.
Cash for the Stache? Let’s Rock AIDS!!
December 4, 2014
You’ve seen the moustache… and more of me than you intended to this week… and, well, the time has come… so let’s harness the full power of Freddie Mercury together!
The fundraising drive for MTV Staying Alive is live- from now through Saturday you can make a minimum donation of $8 (MTV Staying Alive and the Big Give fund drive is based in London- so a £5.00 donation roughly equates to $8.) Your donation goes towards helping young people fight HIV in their communities around the world. But it also does much more.
For each dollar, Durex will supply 5 free condoms for young educators- meaning that your minimum donation of $8 (£ 5.00) would provide 40 condoms!
What will happen regardless of whether the donation gets doubled? You’ll help vital prevention programs get funded. HIV is a complex problem, but proven strategies combined with a creative approach work in minimizing risk for HIV transmission… and MTV Staying Alive has an incredible track record.
So let’s do this! Join me in making a donation today… or I’ll post more pictures of me in the shower with this moustache. And yes, the drapes do match the curtains. Don’t make me prove it.
We Are All Queen,
Pedro Zamora, Half A Lifetime Ago
November 11, 2014
Today marks 20 years since Pedro Zamora passed. That’s half my lifetime ago, but the loss still resonates with me because of Pedro’s influence on my life and my work as an educator. His relationship with Sean Sasser on MTV’s Real World showed me that a loving, healthy relationship with HIV was possible. Pedro’s roommates reactions to his status were mixed in the beginning, but the solid friendships that grew (particularly with Judd Winick) made me realize how cool my friends would probably be if I ever spoke about HIV.
See, half my lifetime ago, when I “met” Pedro through his appearance on my television, I was a year and a half away from talking about my HIV status. At that time, in 1994, I’d spent pretty close to half my lifetime living with HIV… yet I’d never openly discussed my status, only when backed into a corner by my parents or at a doctor’s appointment. Or when someone ratted me out to a girlfriend.
Pedro showed me that you can disclose on your terms. That HIV can just be an extension of who you are. If someone has a problem with your status, it’s not your fault it’s their ignorance that is the reason for the uneasiness.
His educational style was more straightforward and less laid back than the one that I would adopt after I spoke out; but in the pre-protease era, that’s how you needed to reach people. I loved watching him educate on The Real World, then simply live his private life in public as he fell in love with Sean Sasser and shared laughs with Judd and his other roommates over silly, mundane things.
As I was watching from my parent’s house where I was living at the time, my now-partner, Gwenn, was also tuning in. Her thoughts on Pedro:
“I remember watching the San Francisco season of the Real World between
my freshman and sophomore year of college at my friend’s house each
week. When I went back to school that fall I also remember the day that
Pedro Zamora passed. It was very soon after that I heard a young woman
speak at my school who was HIV positive and that is where my journey to
becoming an activist began. It’s been 20 years today since Pedro’s death
and although I didn’t know it at the time it was the precursor to my
When Pedro passed in the fall of 1994- the same day that the last episode of his season of the Real World aired, I was devastated. All of my fears of my own mortality, which I’d mistakenly thought I’d come to terms with, bubbled up. Throughout Pedro’s journey, I was making baby steps towards a future I didn’t think was for me: being open about my HIV status. But after he died I just wanted to go back to never thinking about HIV again, and I hated it for taking my new hero so abruptly.
Ironically, Pedro was a hero I couldn’t even say was my hero: half my lifetime ago I was still so quiet about my HIV status.
A year after his passing, there was a Real World Reunion. Judd, Puck, Pam, Sean and the rest of the cast were there. Everyone except Pedro. Judd teared up and asked viewers to “do something” about HIV, anything. It was a desperate plea not only for himself, still grief-stricken, but also a call to arms that his friend, Pedro, would have given had he been there. I was in a lingering depression, one that would last a couple more months- 1994 had been tough, I lost pop culture heroes in Pedro and Kurt Cobain and was also blindsided by a hepatitis C diagnosis.
At the beginning of 1996, I was ready to answer Judd’s call. I posted a website, outing my status once and for all. I began to hone my craft as a writer and develop an educational style that, like Pedro’s, was just an extension of who I was.
And now it’s a half a lifetime later. Pedro’s not here in the physical sense, but his influence has stayed with me over the years. I have the love and the life I dreamed of when I was watching him and learning about his life; a journey he unselfishly shared.
I’ll never forget the doors he helped to open up for me in my own journey.
Ethan Zohn: Cancer and World Cup Survivor
July 10, 2014
Soccer is the most popular sport in the world. But in the United States it’s a polarizing topic of discussion, not unlike the issue of abortion, Michael Bay reboots and fanny packs at theme parks. (They’re practical, y’all.) This summer, I’ve come down with Soccer Fever. Not since the World Cup in 1994 have I been so into the sport.
I wanted to talk about the World Cup, so I went to the only former soccer pro I know: Ethan Zohn. A co-founder of Grassroot Soccer, canzer crusher and Survivor Africa winner shares his thoughts on HIV, this year’s World Cup tournament and what it means to truly survive life. (NOTE: Ethan’s answers submitted before the Semi-Final matches between Brazil/Germany and The Netherlands/Argentina. He knows his shit.)
So, I gotta know, Ethan: do you have any favorites in the World Cup?
Of course I do, I live for World Cup. I have been to every World Cup since 1994. Before the cup, I felt Brazil would crush everyone. But now, I’m leaning towards an Argentina / Germany final with Argentina winning. Plus I love yelling out the name Schweinsteiger at random moments throughout the day.
What’s up with that dude who bit the other dude?
That dude is Suarez, probably one of the best players in the world. To be honest I think he in love with Giorgio Chiellini. That was a love bite, not a foul. Plus Uraguay, where Suarez is from is the first country to regulate legal production, sale and consumption of marijuana. What do you expect?
I’d expect a more chill Suarez, but I’ve known people who freak out on the pot… a friend of mine… someone I know quite personally. He becomes a panicky mess… anyway…
After winning Survivor, you used the prize money to found Grassroot Soccer and help utilize the world’s love of soccer in the fight against HIV. Several years later, you were diagnosed with cancer. I know you didn’t found Grassroot to gain cosmic favor, but… you getting cancer after going to bat, er, going to kick ball for the HIV community, was one of the lamest fouls I’ve ever seen in the sport of life. How are you feeling these days?
Ha! True, I need to have a word with the referee of this game of my life…who is that? God? David Hasselhoff?
I’m feeling great and excited I’m alive and strong enough to drink beer and watch soccer all month. In the years leading up to my cancer diagnosis I have been working hard through Grassroot Soccer, to help prevent young kids in Africa from contracting this life threatening disease. I do not know what it is like to have HIV, nor do I have HIV. But, I do know what it’s like to walk into an office and get handed a very scary life ending diagnosis. Getting cancer gave me some street cred. Now I just want to do everything in my power to make sure others do not have to go through the same crap we went through. Can I get a “hell yeah”….
Hell yeah! Lastly, any big goals for Grassroot Soccer during this World Cup season, or any of your other charitable efforts?
Where do I begin! We always have cool events and fundraising campaigns. Right now, WHEATIES (the iconic cereal that always has amazing athletes on their boxes) is running a contest #WheatiesNext – 5 up-and-coming athletes in a voting contest for who gets on the next box. Each picks a charity to benefit.
Our newest Pro Ambassador, Christen Press, is in the contest and we are her charity – this is a big contest and we are one of the 5 chosen charities – woo-hoo! Check it out here:
Thanks, Ethan! Enjoy the rest of the World Cup. And the beer, you’ve earned it!
Interview w/ Merce’s Charles Sanchez
June 30, 2014
A couple of weeks ago I blogged about Merce- a humorous web series that is centered around an HIV positive character living in NYC. I recently sat down with co-creator, Charles Sanchez… meaning, I sat at my laptop and fired him some questions and he sat at his and answered them. Enjoy!
Donate to the project here!
(anyone who donates $25 or more can get a signed copy of My Pet Virus… I have 5 available, so just leave a Comment on this blog entry to let me know you donated and I’ll make contact to get a mailing address! -SD)
Hey Charles! Love the concept for Merce- how long have you had the idea and what inspired it?
Hey, Shawn! Let me just say how happy I am to have met you and how much I enjoyed your book. I’m totally a fan.
I brought in my pal Tyne Firmin, who’s an amazing director and actor, but had zero filming or editing experience. We shot what ended up being a whole web series, called Manhattan Man-Travels, truly ghetto-style, mostly for the joy of creating. Absolutely no budget. Very Judy and Mickey “Let’s-put-the-show-on-right-
Merce spoke directly to the camera and we followed him through many crazy romantic situations, from dating and trolling the internet for sex to him being in an actual relationship. We feel like we have something really special in this character, and want to up the production values and see if we can reach a wider audience. We’ve added characters for him to interact with and focused the musical fantasy elements (every episode will have a short musical number). We decided to put Merce’s HIV status more to the forefront, since there’s no character in mainstream American media that’s HIV positive.
And an HIV comedy? Well, that’s crazy, right? We didn’t set out to, but we lucked into doing something that no one else is doing.
Do you have a favorite HIV positive character from a movie?
But I haven’t answered the question. Buzz from the play and movie of Love! Valour! Compassion! He deals with his status with humor, sometimes acidic humor, but he’s authentic and courageous and funny, and doesn’t let his HIV change who he is.
If you could give any character from a mainstream movie HIV (to make them more interesting) who would it be?
Oh, gosh! I don’t know! Maybe Bridget Jones. With all her pouty angst and weight issues, and yet those dreamy men still seem to fall for her. What would happen if she also had to worry about whether her panties were still white, because maybe her Kaletra was causing some poops-a-daisy problems?
That would make for some good comedy. Or someone ridiculous maybe, like Wolverine or Harry Potter. Of course, if Harry Potter had HIV, he could just zap it right out of himself. He’d just take his wand and say, “Heenis-a-penis-a, no HIV-ness-a!”
I like that idea! How is fundraising for Merce going? Deadline? And what’s the plan if you make your goal, and what’s the plan if you don’t?
Tyne and I are determined. We’re going to make Merce happen no matter what. It’s inevitable.
(Check the link for other incentives to donate… and don’t forget, anyone who donates $25 or more can get a signed copy of My Pet Virus… (while supplies last!) I have 5 available, so just leave a Comment on this blog entry to let me know you donated and I’ll make contact to get a mailing address! Let’s make Merce happen! -SD)
National Nurses Week
May 7, 2014
Every day is Day, every week is a Week, and every month is a Month of one type of recognition or another. It’s not a bad thing- there are lots of causes that need more attention than they can get. Especially in this great age of great distractions.
I miss a lot of it. But when I noticed that we were halfway through National Nurses Week, I felt the call to pull out the ol’ laptop and punch out a blog post of love and gratitude for my lifelong friend and ally: the nurse.
As a kid with a bleeding disorder, I found myself visiting the hospital a lot more than the rest of my friends. It could be a scary place. Initially, I hated having my blood drawn. That was until I noticed a pattern: Nurse Gail never missed a vein. And I enjoyed talking to her. Having a needle in my arm went from, well, having a needle in my arm to having a friend by my side. I’d always request Gail, and since she worked a lot, she was usually there for a quick catch-up session over vials of plasma.
In the bigger picture with regards to the HIV epidemic, it was often nurses who cared for the first generation of people who succumbed to the onslaught of HIV. When friends and family were too scared to show up, it was the nurse who provided comfort, which surely meant a lot when doctors were providing no answers or solutions to what was happening back then. The strength of the nurse was and will always be a simple, if elusive and rare, trait: tireless compassion.
It’s not an easy job to turn a hospital into a home away from home, but somehow nurses pull it off. I know I’m forever grateful for all of the nurses who have shown me kindness and care when I needed it most.
Ripley’s You Better Believe It
April 28, 2014
Vaughn Ripley is a man on a mission. With over 30 years of living with HIV under his bike shorts, the avid cyclist, dad and author of Survivor: One Man’s Battle With HIV, Hemophilia and Hepatitis C is ready to tackle his next goal: be the first openly HIV positive man to grace the cover of Men’s Health Magazine.
The cool part about all of this? We can help make it happen. Go here to vote for Vaughn. He got a retweet on Twitter from William Shatner, but if he’s going to get beamed up to the cover he’s going to need your help, too!
Labtest Contest X: Win Body Counts By Sean Strub
February 21, 2014
The Labtest Contest is back! And the grand prize has never been better- guess closest to my t-cell count and win a signed copy of Sean Strub’s incredible new book, Body Counts! The rules are posted below… be sure to follow them and good luck!
Shawn’s Guess: 422
Shawn’s Doctor’s Guess: 670
March-July 2010: Charles Oliff (guess: 567 actual count: 565)
July-December 2010: Aimee Lee (guess: 516 actual: 511)
December 2010- March 2011: “Satan” (guess: 666 actual: 662)
March-July 2011: Sharon Paul (guess:
520 actual: 508)
August-January 2012: Justin Starkenburg (guess: 570 actual count: 579)
February- June: Bob Geise (guess: 595 actual count: 590)
July-September: Sahara Frog (guess: 515 actual count: 512)
September-January 2014: Scott Anderson (guess: 620 actual count: 620)
February-October: Mary (guess: actual count:585 actual count: 583)
NOVEMBER RESULTS: 538 (No Contest)
1. You have to post your guess (between 400 and 700 t-cells) on my Poz blog Comments section
2. Relatives are allowed to guess! Bribes accepted!
3. Closest guess wins- if it’s a tie, the closest guess that DID NOT go over the actual count wins.
4. One vote/guess per person. Must have a valid email address.
5. Deadline is Friday, February 28, 2014 12:01 am EST