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?

Positively Yours,
Shawn

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.

Positively Yours,
Shawn

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!

redefine-dallas-mtvstayingalive.JPG

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. 

Positively Yours,
Shawn

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.

(read my 2010 article on Ryan for POZ.)

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.

Positively Yours,
Shawn

(Read my Positoid column, “Do the White Thing”, from the January 1998 issue of POZ.)

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.

Positively Yours,
Shawn

Live Long and Prosper

February 27, 2015

livelongandprosper.jpg

Today lovers of sci-fi and beyond are mourning the loss of Leonard Nimoy, best known for his portrayal of Spock in Star Trek.

I’m not going to claim Trekkie status (is it “Trekkie” or “Trekie”?), far from it. I remember seeing Star Trek in syndication at my grandparents house, where I’d go after school during my early elementary school days.  I really liked the show, and saw the first three movies in the theater… the ear worm thingies in Star Trek 2: The Wrath of Khan, still give me the willies. But as a kid, I leaned more towards Star Wars.

But, of all the characters in both of those fantastical realms, I think Spock would have been the guy to find a cure for HIV.

And it is Spock’s most famous sentiment that I pass along to you.

Live Long and Prosper,
Shawn

Take the GLAAD Celibacy Challenge

February 19, 2015

shawngwenncelibacy.jpg
Gwenn and I are taking the Celibacy Challenge in solidarity with our gay, blood-donating friends.
(photo by Christina Fleming)


Would you give up sex for one year to donate blood?

When the FDA lifted the the gay blood ban, that was their caveat. GLAAD, with the help of Alan Cumming, brilliantly lampooned the decision to include the celibacy clause and offer some advice to any gay man who wants to donate blood but is rattled at the thought of an extended dry spell…

Thanks to Nina Martinez, my positoid pal, for tweeting about this video. Like me, she was infected with HIV early in life via tainted blood products. And, like me, she feels that risk assessment for blood donations should be based on behaviors, not sexual orientation. If you agree with us and enjoyed the video, then please sign the Celibacy Challenge petition.

Positively Yours,

Shawn

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….

MUSIC

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.)
 

Sweets 

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…

Videogames
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.

Pro Wrestling
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.)

Ex-Girlfriends
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.

Family
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.

Gwenn
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.

Positively Yours,
Shawn

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