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.
Miley Cyrus & Rihanna TittyF#%k AIDS (In A Good Way)
November 3, 2014
At a recent amfAR fundraiser, Miley Cyrus and Rihanna showed up in risque and boob-revealing outfits. Which is the same thing as saying that President Obama showed up to a State of the Union address wearing a tie. Some people may have been put off- but the outfits turned heads and made headlines, thus making many fans of both artists aware that their heroes support the HIV/AIDS cause.
What’s even better than that? The fact that Miley and Rihanna’s hearts didn’t just hide behind those breasts. Anyone who was upset by their appearance were quickly silenced by the generous donations that both stars made at the event, which helped amfAR raise over $3 million.
Being a rockstar isn’t just about singing the songs, playing the shows, making the mad money or looking the part; being a rockstar is ultimately about rocking the world. And contributing money and raising awareness about the need for continued research for a cure for HIV is about as rockin’ as it gets. I’ve been living with HIV since I was 11, a time when I fell in love with Belinda Carlisle’s “Heaven on Earth” album. I want to live to see the day when HIV is cured- so myself and others can live the healthiest lives possible.
Now that’s heaven on Earth, right?
Thanks again, Miley and RiRi. Big HIV-positive hugs to you both!
THE TOWELING: A Halloween Horror Short Story
October 31, 2014
Gary lays naked on his bed in his modest NYC apartment in the East Village. The window is cracked open and a breeze comes in as he channel surfs. He shouts towards the cracked bathroom door that is several feet from the bed. “Save some hot water for me!” Gary tugs the sheet with his toes, managing to cover his knees without the use of either hand. “Don’t pretend you can’t hear me… ACE?” A loud laugh echoes from the shower. “You jackass,” Gary says as he sighs, speeding through the channels before landing on a friendly face. “Oh, Anderson- now we’re talking.”
The water stops.
“Alright Gary, it’s all yours-”
“Shhhhhhhhhh,” Gary yells out. “It’s the Coop!”
“Then pause that shit, Gary.” Ace grabs a toothbrush, squeezes some paste onto it and hurriedly begins to brush as Gary bursts into laughter. “Whash sho funny?” No answer. Just more laughing. “Paush it, Gauwee!!!” Ace spits into the sink and rushes to the bedroom, which is the living room as well. Gary manages to shift his attention from Anderson to Ace. “Sorry, you took too long, missed all the good parts.” Gary says teasingly as Ace stands beside him, dripping wet and still naked.
“Back it up- I want to see something funny.” Ace demands.
“I guess it’s only fair that we both get to see something funny right now,” Gary says, prompting Ace to suck in his stomach before making a play for control of the remote. They wrestle for it until Gary agrees to Ace’s demands. “Alright, alright, I’ll back it up, geesh… but shut up because you gotta hear this.”
Anderson Cooper throws to a clip of Pat Robertson from The 700 Club: “You might get AIDS in Kenya. The people have AIDS in Kenya. The towels could have AIDS.”
“Oh my God, he didn’t,” Ace says, stunned.
“I know, right?”
“Back it up, I gotta hear that again,” Ace says.
“Are you sure?” Gary asks with a smirk.
“Because it looks like you’re already too scared to use my AIDS towels.”
“Oh shit,” Ace says, looking down at the puddle of water at his feet. “sorry…”
Ace starts heading to the bathroom; but Gary stops him just long enough to grab a condom, wrapper and stack of tissues from the nightstand, plopping them into Ace’s hand. Gary grabs Ace’s elbow. “And don’t forget to take your prep.” “I never do,” Ace replies.
“Any side effects?”
“No- two months in and I don’t notice anything…”
“You know, Ace,” Gary begins. “I’m undetectable, we use condoms… you don’t have to-” “Shush, Gary,” Ace says. “I’m not scared and don’t mind. It’s more for the guys out there who don’t know their status, anyway, they’re the ones I’m worried about.”
“Well, you shouldn’t be worrying about them at all,” Gary says.
“Oh, ready to lock this down are we?” Ace asks.
Ace leans into Gary for a quick kiss before heading to the bathroom, where he discards the sex paraphernalia into the trash can before gazing into the mirror, shaking his head and smiling to himself. Ace flicks open the mirrored cabinet door and retrieves a prescription bottle. Before he opens it, he looks around for a towel but doesn’t see one. “Please don’t tell me you are out of clean towels,” he whispers to himself before squatting down to check the cabinets underneath the sink.
“Gary, where are the— Gary?”
As Ace emerges from the bathroom he sees Gary laying on the bed, only now he has a white towel over his face. “You goof, playing peek-a-boo with yourself?” Ace asks as he walks toward Gary. “Give me that-”
Before he can finish his sentence, the towel flies up from Gary’s face and floats above the bed. Gary’s eyes are open, but are lifeless and white. Ace stumbles back towards the bathroom, reaching behind him for the doorway as the towel floating above the bed takes on the form and physical characteristics of a bat, flapping its wings. Through the cracked window several more towels fly in and head straight for Ace, knocking him into the bathroom and sending him spiraling through the shower curtain and causing him to fall into the bathtub.
The bathroom door closes. The only sounds to be heard throughout Gary’s apartment now is the crackle of city life on the streets below and Anderson Cooper sarcastically taking Pat Roberston’s warning to task: “Overseas… everything overseas is bacteria… you just can’t even imagine. I’m starting to think that we’d be better off not traveling at all.”
I’d also like to thank Pat Robertson and Anderson Cooper for their roles. Without Pat’s imagination stories like The Toweling would not be possible.
My Hep Story
October 24, 2014
When people think of my medical conditions there tends to be a pecking order… HIV gets top-billing, then hemophilia (raise your voices, my fellow thinbloods!)… and at the end of the line is poor ol’ hepatitis. Hep allowed me to share my story about how hepatitis has affected my life on their Hep Stories page.
It’s been an interesting journey. As a kid, I forgot I even had hepatitis B because hemophilia cast a much bigger shadow on life. Then, as an adult living with HIV and dipping my toes into combination therapy, hepatitis C influenced my decision to take it easy on my liver and do a week on/week off schedule with my HIV medications. (Though I’ve been taking my HIV meds continuously and without interruption since 2013, I wrote about my week on/off strategy for POZ in 2009.)
See, there I go again. Linking to an article about HIV when this is supposed to be hepatitis’s time to shine. I better wrap this blog entry before hemophilia starts to get jealous, causing a spontaneous nosebleed or an erection that lasts for more than 4 hours.
The HIV Question on Couples Therapy
October 15, 2014
Nina and Gwenn catching up over coffee in September.
Last week I tuned into Couples Therapy on VH1 because I’d heard that Bob Bowers would be making an appearance. I’m a huge fan of the One Tough Pirate, former POZ coverboy and current HIV asskicker. Though it wasn’t the episode my beloved longtime activist friend was appearing on- HIV was a central theme, as one of the castmates revealed their HIV status publicly for the first time.
Evel Dick is no stranger to reality TV- he has appeared on Big Brother twice, winning season 8 and leaving season 13 early due to personal reasons. The personal reason being that his blood test for HIV (a requirement for Big Brother contestants) came up positive. On Couples Therapy, Dick’s girlfriend wasn’t comfortable with his wanting to come forward with his secret. I recognized his despair; he was in that undeniable moment when you can’t fathom another day trying to ignore something that is literally a part of your biology. You have to break out.
During his session with Couples Therapy’s resident therapist, Dr. Jenn, he was asked how he contracted HIV right off the bat. I wasn’t thrilled with the question, neither was Gwenn (my partner who, like Dick’s partner is HIV negative). About a week later, my good friend Nina Martinez, who has been HIV positive for most of her life, started a discussion with Evel Dick and Dr. Jenn on Twitter about the question of how HIV was contracted. Gwenn joined in and I soon followed.
So, without further ado, I’m going to pass this one on to my guest blogger, Nina, who has gone through the trouble of organizing a Twitter conversation and making it readable. There are also links to the show, and her thoughts on why the question (and answer) to “how did you contract it” was bothersome. It’s a must-read in my opinion and I really appreciate Evel Dick and Dr. Jenn’s willingness to share their perspectives with us.
This is best viewed by opening this PDF: “How You Talk and Ask About HIV Matters” by Nina Martinez (PDF) (Or click the tweets that are just a tiny sample of the conversation!)
Did you click the image? Do it… c’mon…
There ya go! Okay, now that you heard from Nina and everyone involved, I just want to end by saying that, yes, how we discuss HIV in private and in public ultimately matters. For the newly diagnosed it’s tricky territory juggling the raw emotions of testing positive with an unknown etiquette. I know, I made quite a few mistakes when my desire to speak out preceded my understanding of the various landmines on the field. Professionals, like therapists, doctors and nurses, also need to be sensitive to HIV’s social ramifications- which often overshadow the medical reality of living with the virus and is what keeps people silenced who are living with it.
I hope Dr. Jenn reads this blog entry and gets why the bluntness of the question is problematic at best and traumatic at worst for a lot of people with HIV. And I wish Dick all the best in this new phase of his life that includes living openly with HIV. I hope he and his partner really dig in, get informed on actual transmission rates for serodiscordant couples (astronomically low) and realize that their relationship can be a safe, intimate and loving one.
My 10,000 Days of HIV Summer
July 14, 2014
A few months ago I was curious about how many days I’ve been diagnosed with HIV. I did the math, starting at my diagnosis in March of 1987. Turned out that this July marks roughly 10,000 days since a test result sent shockwaves through not only my family but my community in Waynesboro, Virginia, as well. I was a scared kid at that time. I just wanted to ignore the bad news.
I didn’t know my prognosis then- which was that the best case scenario saw me living another four years, to my 16th birthday.
Today, as of this post I am two days shy of my 39th birthday. And I’m not ignoring the news- tonight I’m actually speaking to a local news outlet (WHSV) and my experiences living with HIV. That kid who got diagnosed so many years ago could have imagined surviving- but would have never been able to see himself living openly with HIV.
So this summer is special. I’m really enjoying it. And I’m sure, if the fates allow, that I could make it to a 20,000 Days of HIV Summer in 2041… though, I’m thinking that by then they’ll have long since figured out a scientific solution for HIV as well as many of the other medical issues that affect us.
No matter what the future holds- I’m ready. And I’m happy as hell to be here.
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)