The following is a Positoid column I wrote when I was 22, published in the January 1998 issue of the magazine. I’ll catch you on the other side to explain how Ryan had one more surprise in store for me...
Lying on my bed last night, scarfing cookies and channel-surfing, I saw Judith Light staring out at me from the TV screen. I knew it wasn’t Who’s the Boss because she didn’t have the bleached-blonde mane; her hair was brunette and gnarly curled. Like my mom’s hair. Only the mother of a hemo-positoid could look like this. I was tuned in to the middle of The Ryan White Story. I’d seen parts of this movie before I came out of my viral closet. But now it got me thinking…
There was a time when I avoided anything at all about Ryan White. I even switched off the television when he appeared, age 12, to testify before Congress, share Pop Tarts with Michael Jackson or advise Barbara Walters on how to treat a hemorrhage. I knew he was doing incredible things, but had no desire to hear him speak, let alone meet him. Everyone was always saying that Ryan was, as I’ve heard many times about myself, “wise beyond his years.” Being the world’s most famous “innocent victim of AIDS” will do that to a kid.
Like Ryan, I was kicked out of school (sixth grade); unlike Ryan, I didn’t ask questions. After all, I didn’t even know I had HIV when I was dumped like a chump from the ranks of spit balling and armpit farts. My mom recalls finding me in the school office in tears, blubbering, “I didn’t do anything.” But until a couple of years ago, I’d forgotten every detail of this ordeal. It was all a blur. When Mom told me, I couldn’t believe it! Like it had happened to someone else. I thought, “This sounds like Ryan’s life…”
So flashback to the summer of ’87: My mom asked me if I wanted “to do what Ryan’s doing.” I thought about it seriously, but all I could imagine was people asking questions like “Are you afraid of dying? Why don’t you go ahead and die already?!” Though fantasies of fame and power piqued my curiosity, they just weren’t enough. The substance wasn’t there. I had nothing to teach people that Ryan wasn’t already doing. So I decided to stay in school (otherwise everyone would assume I was on my deathbed) and let my twin brother by a different mother carry the hemo-positoid torch alone. Ryan did a great job, and to be honest, I was scared shitless of never getting a girlfriend. I wasn’t too big on the idea of being a copycat, either.
My mom loved to keep up with Ryan’s adventures, but I did my best to ignore him. His presence reminded me that I was sick. I didn’t want to be sick – I wanted to be coooooooool. To Mom, Ryan was a member of the family. With great pride, she explained to me importance of his accomplishments: Through Ryan telling his story, he saved a lot of hemo-positoid brothers from ass-whuppings in their own little towns. He opened people’s eyes and stripped them of some fears.
So in 1990 my mom was pretty upset when her adopted other hemo-positoid son passed to spirit. Even without her saying so, I could sense that some of her hope was buried when Ryan was laid to rest. I felt the same way… only I’d spent my whole infected existence building a barrier between myself and Ryan. It’s strange, but I feared becoming too attached to him because he had AIDS. How’s that for irony? To me, my HIV was like my little snowflake and unlike anyone else’s snowflake. I guess I was afraid that if I mashed my little flake into the collective Snowman of AIDS, I would melt with the rest of them.
Seven years passed. Jeanne White became an amazing activist and wrote a book about her life. My mom and I finally met her – she was speaking at a nearby Virginia college, and afterward we invited her out for a late dinner. There was a surreal quality to the evening, even though it felt totally natural. For mom, it was her chance to meet an idol. She gave Jeanne updates on the hemo-settlement and shared secrets about how she raised me. By talking with Jeanne, I too, realized how far I’ve come in this maddening journey. She was very pleased when I told her I’m speaking in public and enjoying it. I knew I was at last in the right place. I’ve finally caught up to her son.
I never doubted Ryan’s influence or integrity, but only now do I fully understand him. And when I pass to spirit, I’m going to find him, give him a big positoid hug and say thanks.
I remember writing the above and really, truly processing my feelings for Ryan for the first time. Writing was still a new tool for me, after starting the Positoid column I remember how it felt to get edits sent back... so much red ink! At first I was miffed but, of course, I learned the invaluable contributions that an editor brings to the table. And since then, I’ve had the chance to sling some red on a few writers myself... much more enjoyable to be on that side of things!
But I digress. That column above was the only time I’ve written anything subject to editing and get the word that it works great as is. It will never happen again, either. It’s not because I was a natural wordsmith, it’s just an example of some of the magic that is Ryan White.
In 1998, I was just two years into wearing my HIV status proudly on my sleeve after spending the first decade of my diagnosis keeping the info mum. It was an exciting time, for sure, but one of the most transformative moments of my life occurred several months after “Do the White Thing” was published. Jeanne White-Ginder, Ryan’s mother, was speaking at a nearby university. I had a Board Meeting that night, but ditched it to go see the talk. Afterwards, I was waiting in a line of about 75 people or so (there were hundreds at the event) for the chance to say a quick “Hello!” to her.
As I was talking to my friends who attended the talk with me, someone behind us interjected. “Are you Shawn Decker?” It was Gwenn. We’d chatted on the phone once before, after she’d contacted a local AIDS Services Organization looking for a young person living with HIV and willing to speak to high school students about it.
We chatted for a couple of minutes, and then we exchanged email addresses to stay in touch... which clearly meant we thought the other was cute or intriguing in some way, worthy of a follow-up encounter. So, a couple of weeks later, we met up on the grounds of the same university to view portions of the AIDS Quilt that were temporarily on display. Our friendship soon mutated into a love story, and within a year we were educating at similar events to the one where we met, answering questions on a stage at some far off college about what it’s like to be a couple when one person has HIV and the other does not.
But this column is about us. It’s about Ryan. And how none of the best moments of my life would have happened without him. Had he not chosen to speak out, his mom wouldn’t have carried his educational torch after he passed. There would have been no talk for Gwenn and I to “randomly” meet face-to-face. Though we did speak on the phone, Gwenn later told me that she wasn’t going to call me back because she was looking for someone who had contracted HIV through sexual contact. (Like Ryan, I contracted HIV as a child via tainted blood product treatments.)
So, I look back at that fateful night in the fall of 1998. The little voice that said, “Skip the Board meeting... there will be another... it could be years before Jeanne rolls through this neck of the woods again...” That had to be Ryan, pulling a couple of strings from beyond this realm that you (the reader) and I (the writer) currently exist in. Maybe, like my editor, he thought the above column was without error, too? Or he wanted to make sure I made good on that promise to give him a big old hug on the other side?
However he managed to position Gwenn within eavesdropping distance of my stupid self-deprecating hemophilia humor, I am grateful.
Years later, I was able to tell Jeanne the story, too, when a national hemophilia conference brought us together. I remember us just hanging out with Jeanne at the end of the evening, and how much fun she was to be around. To me, it felt like a full circle moment. And as she let loose with some seriously funny insights, I now realize why she felt so comfortable just being herself with us...
Ryan was there, too.