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/