Q&A About “Doing It” with CDC
February 13, 2016
As many of you know, we are a part of Doing It – CDC’s new national HIV testing campaign. There was a lot more that went into creating the campaign than you might think, like finding real people (like us!) who are passionate about testing and want to share their story as part of a national campaign. We loved being a part of it, so to celebrate Valentine’s Day, Karra French, one of the coordinators on set, sent us a few questions to answer about our experience, and why Doing It means so much to us.
KF: Why did you want to be a part of the Doing It campaign?
Gwenn: We both believe that testing for HIV is so crucial. We also think it’s important to show that serodiscordant couples like us can have a healthy and happy relationship. A lot of people think that a positive test result means the end of their love life, which puts up another barrier to getting tested. But that couldn’t be further from the truth.
KF: What was the photo shoot like?
Shawn: The photo shoot for the Doing It campaign was a lot of fun. We weren’t expecting such a cool make-over, so it felt more like a modeling gig than an HIV testing campaign – which is good! We believe that you have to disarm people to get information across; you can’t come in heavy-handed or preachy and expect people to respond. Everyone’s attitude at the shoot was very relaxed and we knew that the results of all the hard work would reflect that- and it did!
KF: Were you comfortable being in front of the camera?
Shawn: We were. Since we’ve been together, we’ve shared our story a lot. But that doesn’t automatically equate comfort. If a photographer asks us to pose in a weird way or tells us not to smile so much, that raises a red flag. Thankfully our experience with the Doing It campaign didn’t have any of those fear-based elements that we’ve encountered before. Everyone was so accepting and supportive of our participation, and really understood what the heart of this campaign is all about.
KF: What was the most memorable part of the day?
Gwenn: Seeing Shawn’s pompadour! He’s tried to get his hair to do that again, but that was a professional job.
KF: Do you ever look over your shoulder, expecting to find three dozen (literally) armed heart pillows following you around?
Shawn: Yes, I do! It starts as a nightmare – they walk slowly towards me but then it’s fine because they just end up giving me a big hug.
KF: How does your participation in the campaign help others?
Gwenn: We hope that it helps people get over their fear of being tested for HIV and understand that it’s better to know your status. Most importantly, we want people to know that a positive test result doesn’t mean that you aren’t worthy of love and happiness.
KF: What does the campaign theme, “I’m/We’re Doing It,” mean to you?
Shawn: Well, there’s the obvious double entendre there… so we won’t get too graphic on what “doing it” means to us. The theme is great because of that. It brings up the idea of sex but then directs people to information about HIV testing. An HIV testing campaign should acknowledge sex – in a fun and non-judgmental way.
KF: What can people learn from your serodiscordant relationship that they can apply to their own lives?
Gwenn: From the outside, I think that some people can’t understand how a couple could deal with HIV. But that just comes from a lack of understanding about transmission and current treatments for HIV. If you take it down to the basics, there’s a lot more to learn that goes beyond HIV. With us, we know Shawn’s medical conditions. And we know mine, as well. It’s about staying healthy together and being there for each other. If that’s not what love is about, then I don’t know what is.
KF: What would you tell someone that is fearful or reluctant to get an HIV test?
Gwenn: We’d say that we understand – we’ve been there. The first time I got tested, after being in a relationship with Shawn for six months, we were both nervous. We’d been completely safe, but we still had that fear… and we were HIV educators! Over time that aspect of it got easier, but we remember that first time and can empathize with anyone who is nervous about getting an HIV test. Our advice is simple: you are worth it. There is such a risk to someone’s health who is HIV positive and doesn’t know it.
Magnetic (Serodiscordant) Couples on TV
December 9, 2015
As someone who is HIV positive and in a relationship with someone who
is HIV negative, I was excited to hear that a serodiscordant
(“magnetic”) couple was going to be included in season 4 of Shuga, the fictional series based on real world experiences with HIV. Femi is HIV positive. His girlfriend, Sheila, is HIV negative. I want to share my reaction to what these characters face, episode to episode, and share some personal stories about what my own experiences have been.
Hope you find this insightful!
Episode 1, Season 4
Sheila has planned a family dinner as a way to inform her family of
Femi’s HIV status. Femi is naturally nervous about how the news will be
received and Sheila attempts to alleviate his concerns, promising that
everything will be fine. But when an ignorant HIV comment from her
uncle is greeted with supportive laughter from her parents, Sheila and
Femi decide not to disclose his status…
It’s a heartbreaking scene because Sheila expects so much more from
her family; only to discover that her lifelong support system has a real
hang-up when it comes to HIV. In their final scene in episode 1, Femi
consoles Sheila and their love for each other is quite clear,
particularly in how they treat one another in difficult moments.
THE MAGNETIC COUPLE ISSUE IN THIS EPISODE: How and when to disclose the positive person’s HIV status to the HIV negative person’s family.
WHAT THIS WAS LIKE FOR ME: In my relationship with
Gwenn, her mom knew my HIV status before we started dating. Also, I was a
new person in her life and we lived 8 hours away. Like Sheila, Gwenn is
an independent and strong person. Her mom was concerned, but also knew
that Gwenn was an HIV educator. Still, her mom didn’t know a lot about
transmission, so I’m sure that there was still some worry.
When I met Gwenn’s mother, things changed for her- I became a real
person, no longer overshadowed by a daunting medical resume. Meeting
Gwenn’s mom in person helped a lot. She got to see me and Gwenn interact
in person and could tell that we were really in love. Her concern after
meeting wasn’t so much that Gwenn would become infected, but how she
would react if I got really ill. A legit concern, because I was just
starting HIV meds at the time and in the process of regaining my health.
A few months after that first meeting, I had my first family dinner
(Thanksgiving) with Gwenn and her family: and everyone was aware of my
HIV status and welcomed me- and most importantly, us- with open arms.
The Secret Sex Lives of Emojis- EXPOSED!
December 1, 2015
This World AIDS Day, MTV Staying Alive has exposed the secret sex lives of emojis in this shocking video: VIEWER DISCRETION IS ADVISED.
Shaking the Disease: An Unlikely Tribute to Depeche Mode
November 19, 2015
This month’s issue of POZ Magazine is all about long-term survivors. And this year marks a special occasion in my own long-term journey as a positoid…
25 years ago, I met my favorite band, Depeche Mode, thanks to the Make-A-Wish Foundation. Back in 1990, the prognosis wasn’t good. But I’ve been fortunate- I had access to great medical care when I got really sick in 1999, and HIV medications not only bailed me out of a scary health situation, but they have afforded me a level of health I never thought possible. So I wanted to do something special this year as a way of giving thanks: record a Depeche Mode cover album. And do it to raise money for my friends at the MTV Staying Alive Foundation, who provide grants to youth-based HIV prevention efforts around the world.
Every little bit helps!
If you’re interested in helping out, you can purchase the Limited-Edition CD at my music site (Synthetic-Division.com) for $25. Only 120 will be available for purchase. On December 1st, World AIDS Day, the album will be on iTunes.
A Month of Superheroes: Charles Sanchez and Team Merce
September 4, 2015
This week saw the big finale of the 8 episode original HIV comedic web series, Merce. I was so intrigued when I first heard about Merce last year, via an Indiegogo campaign – could a comedic story centered around a guy living in NYC work? I believed. I donated. I blogged about it.
And Charles Sanchez and the incredibly talented team at Merce delivered. Big time.
I sat down with Charles Sanchez, he at his computer in New York and me at mine in Virginia, to see how he was feeling after accomplishing such a lofty goal with style.
Are you happy with the response to Merce? Any surprising reactions (good, bad, indifferent)?
For the most part, we’ve gotten nothing but positive feedback. Even
people that were apprehensive at the idea of an HIV+ musical comedy,
once they watched an episode or two, were hooked, and find the show
charming and hilarious and wonderful.
have only been two negative comments on our videos, and to both of them
I responded as Merce would and just said, “Thanks for watching and have
a super day!”
would love if every episode had a famous HIV+ person in it, like you,
Mark S. King, Peter Staley, Greg Louganis, Mondo Guerro, Jack
Mackenroth, dreamy Andrew Sullivan and the like. And I’m not sure what
I’d have those people do, but I’d hope that they’d be willing to have a
ball and dance sparkly dances with us! I wonder if Magic Johnson can sing?
We’re still reeling from season 1! But my producing partner Tyne Firmin
and I have talked about what season 2 might look like, and it’s a
definite possibility, perhaps next year. Merce‘s message of
living life with joy and humor and love is and important one, and the
more we can get his silliness out into the world, the better. Soon after
my HIV diagnosis almost 12 years ago, I was told that stress and worry
are some of the worst things for the health of us pozzers, as you call
us (I adore that, by the way). The opposite of stress and worry is joy
and lightness, and that’s what I try to convey with Merce. It’s also how I try to live my life, by choosing joy.
A Month of Superheroes: Georgia Arnold/MTV Staying Alive
August 25, 2015
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)
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.