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.
Charlie Sheen Bit Me: An HIV Love Story #ValentinesDay
February 12, 2016
“Charlie bit me… and that really hurt!”
The infamous “Charlie bit me” YouTube video has been viewed over 800 million times since it was posted in 2007. It’s a pretty adorable video, featuring two brothers and a trust exercise gone horribly wrong. But recently, the video took on a new meaning for me when I equated it with Charlie Sheen’s announcement last fall that he is living with HIV.
The love story between the HIV/AIDS community and Charlie Sheen started off quite well. Sure, Charlie had enjoyed his share of nibbles before with his strange behavior and indefensible activities- domestic abuse chief among them. But we in the HIV community are a pretty forgiving bunch and are quick to rally around the newly diagnosed. For a lot of us, HIV has provided levity and a new appreciation for life.
Even though Charlie tested positive in 2011, “coming out” with his status was a big hurdle to overcome and a judgmental and ill-informed public backlash was all but guaranteed. That’s why HIV/AIDS activists took to television shows, Facebook and Twitter in an attempt to provide cover for Charlie and anyone else who is HIV positive, really. I wrote a piece for ET Tonight’s website entitled, Charlie Sheen Doesn’t Deserve HIV Any More Than I Did As at Age 11.
And Charlie’s revelation on the Today Show in November warranted such support. He and his doctor opened up a conversation about viral load and how HIV cannot be transmitted if your HIV medications are effectively suppressing the virus. Per usual, Matt Lauer approached the interview the way that most in the media do- as the prosecutor with Charlie standing trial for not only contracting HIV, but for living with it as well.
At the turn of the new year, the Dr. Oz Show revealed that Charlie Sheen was going to be a guest. Mark King blogged about it, I Watched Charlie Sheen on The Dr. Oz Show So You Don’t Have Toand, after reading Peter Staley’s take on it, Charlie Sheen Shits On 30 Years of AIDS Activism, I decided to take Mark up on his kind offer so I decided not to watch the episode.
Basically, Charlie bit us.
An the reason why it hurt so much is because that episode of Dr. Oz explored Charlie’s desire to be cured of HIV, which led him to a guy I’ll refer to as What’s Up Doc. After getting exposure on Dr. Oz, What’s Up Doc was invited to be a guest on Real Time With Bill Maher a few weeks later, and Maher basically gave him an open mic to discuss how awesome his goat milk AIDS cure is…
This week, Charlie Sheen re-appeared on Dr. Oz to do some damage control. The beginning of the episode was well-done, as Dr. Oz, Charlie and Charlie’s doctor effectively discredited What’s Up Doc and Bill Maher for lending credence to the man’s flawed science and questionable tactics. But then midway through there was a segment filmed at Charlie’s home, with him on the computer doing some research. He was visited by a young man who has made a complimentary documentary about a phony HIV cure salesman in Africa, who was born with the God-given gift to find natural herbs to cure whatever else ails ya.
After watching the trailer of this guy’s documentary, Charlie pretty much said that it was interesting and gives him some more things to think about…
Now, this is where I find The Dr. Oz Show to be in contempt. Why on Earth would you include that in an edited segment of the show? An episode in which you expel the virtues of Charlie returning to his treatment while also explaining why people like What’s Up Doc are so dangerous? For the big finale, the Dr. Oz Show announced that Charlie is entering a legitimate drug trial in an effort to make his life on HIV meds easier- at no point do they have a real discussion on the side effects of his current regimen, which is most certainly the catalyst for his desire to try something new.
It looks like Charlie’s search for a cure is going to be a regular feature on Dr. Oz, which means there will certainly be more finger-biting to come. As someone who started HIV meds in 1999- which undoubtedly saved my life- I’ve made quality of life a priority in my treatment decisions. In 2004, I went on a two month drug holiday after having success with my week-on/week-off drug regimen and I ended up in the hospital. So I’d be a hypocrite if I wagged my finger at Sheen for doing something different.
I don’t regret going to bat for Charlie- he struggles with a lot of issues (as many of us do) and HIV is just one more on the list. I wish the best for Charlie and anyone else that is struggling with their drug regimen. My hope is anyone else who isn’t happy with their drug regimen because of debilitating side effects will have an open and honest discussion with their doctors.
Happy Valentine’s Day,
PSA: Don’t Be Like Bill Maher. He’s Stupid.
January 30, 2016
PSA: If You’re Offended By The #BlackLivesMatter POZ Cover Then You’re Stupid
January 22, 2016
I noticed some blowback on POZ’s Facebook page after the recent issue went up, which features the cover story “Black Lives Matter”. Here’s a sampling of what was written in the Comments section on Facebook:
“Really POZ??? Why not do the front page with all lives matter!!! HIV does not care what race you are and you shouldn’t either!!!!”
“All lives matter . This is racist . I’m so over this “black lives matter” . #AllPozLivesMatter“
“Offended I am All lives matter May stop reading POZ”
There were some supportive comments, too. But I couldn’t help but wonder how many others were offended when they saw the cover story? HIV has disproportionately affected communities of color for decades now. As a white guy, I’m not offended by the “Black Lives Matter” movement because I support a reduction in unnecessary abuse (lethal and non-lethal) by law enforcement. As someone with HIV, I recognize that it was the courage of the gay community and the bleeding disorders community- both minority community’s sans the inclusion of HIV- that has given me the opportunity to simply be here today.
So anytime a community speaks out in protest of a genuine threat to their existence, I feel a kinship.
With the HIV community, I start at a default sense of comradery. I know the many diverse struggles we face, medically and socially. It bonds us. But there are also aspects of living with HIV that I can only empathize with from afar- there are compounded struggles that I will never face based on the fact that I was born to a middle-class white family. And knowing about those struggles makes me a more informed member of the community.
If you’re offended by what you’ve just read then, well, you’re stupid.
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.
#DoingIt for #HIV Testing
December 7, 2015
Gwenn and I are proud to take part in the CDC’s Act Against AIDS campaign, “Doing It”. This is all about HIV testing- to have a healthy relationship, each partner should know their HIV status. The only wrong result when it comes to an HIV status is a “?”.
So get tested! (click on the above above to get more information!)
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.
Before I Die
November 30, 2015
Before I die… before I die I want to experience something I never have: life without hemophilia. I had a decade without HIV, and I’d like to enjoy as many years as possible on the tail end of this journey without it as well.
As I stood in front of this wall in Charlottesville, I recognized and related to the goals written in chalk by teenagers. I was proud to stand in front of that wall, holding an image of myself in the midst of those teenage years, and realize that I have accomplished a lot of those dreams after three decades of life with HIV. From finding love, to seeing the world…
Some of those goals I can’t reach, but I can live without having made a proper dunk in basketball. I guess I’ll just have to settle with those childhood experiences of dunking my cousins in my grandparents’ swimming pool. Living in Tokyo seems unlikely, but that city does seem pretty cool… never say never I guess.
But ultimately, I am just deeply thankful to be here. My friend Steve Schalchlin, who was saved by HIV medications in the mid-90s, has labeled his time from that point on as “The Bonus Round”. Like him, I have a lot of gratitude for the dumb luck/good fortune of having access to medication when I needed it. In 1999, my journey would have surely ended had I not started taking HIV drugs.
And here I am: still dreaming after all these years. If I don’t meet the goals listed at the beginning of this post, then I’ll certainly die as a happy man. I am content in the skin and spirit that was shaped in large part by the challenges presented- and friendships gained- by living, truly LIVING, with these medical conditions.
So get out there and live.
Thanks to Tristan Williams for taking this picture at IX Art Park. If this post inspires you, please consider sharing it. World AIDS Day is December 1st every year.
That pic I’m holding is from a Make-A-Wish Foundation meeting with my favorite band, Depeche Mode, in 1990. This year, to celebrate 25 years since my “dying wish”, I’ve made a cover album called Shaking The Disease: An Unlikely Tribute to Depeche Mode to raise money for my friends at the MTV Staying Alive Foundation.
You can get the album or listen to it here: http://synthetic-division.com/