rett.org

by Shanna Collins

I think I'd like to start by saying just how very often Rett scared the crap out of me. He drove so fast, that driving with him made me feel very aware of the possibility that I could die in his car. Every time he got behind the wheel, I felt like we were racing, like he thought he had a time limit or something. Maybe he did. The whole time I knew him, Rett was constantly struggling for control of a body that seemed to fight him at every turn. In retrospect, I guess his car was predictable. It ran smoothly, did pretty much exactly what he told it to do. I think he just thought driving fast and making me scream was fun.

I never knew Rett without cancer. In my mind, it was just a part of who he was. He was fascinated by cameras and computers, he liked good conversation over coffee and, oh yeah, he got sick sometimes. He didn't identify himself by a disease, and neither did the people around him. Sometimes he could be physically fragile, but it never once crossed my mind that he was weak. Sometimes he'd cry or become angry because there were things he couldn't do, or because he had to be a little more careful than the rest of us if he did them. But after every rough spots, I would watch him pick himself up and attack his life with a drive that, quite honestly, sometimes exhausted me. I asked him once what kept him going-how he lived with such ferocity. And he said that so many people had fought so hard to keep him alive, he just thought it would be a waste if he didn't. So he was a photographer, a poet, a graphic designer, a motorcycle driver, a computer know-it-all turned art critic and he somehow managed to do all of these things while being one of the best friends I've ever had.

I know for a fact-because he told me — that Rett didn't fear death; but I don't think he liked the idea of dying with things left over that he still wanted to do. I always got the feeling he lucked out. He had people around him who understood him. They knew he needed to do things which weren't necessarily doctor recommended-things like driving a little too fast, or traveling to see and experience new places when, sometimes, his body wasn't really too big on seeing the next room.

This past New Year's Eve, I got to spend a few days with Rett in New Orleans. We did all the touristy things. We ate beignets, walked up and down Bourbon Street, rode the trolley and took a tour of the Garden District. But the moment that stands out the most in my mind was on New Year's Eve when he and I stood in Jackson square and tried to watch a ball drop onto a big, plastic baby. There we were, so squished by people we couldn't move. The yells, music and sparklers were so loud we couldn't really say anything to each other-not and be heard. And there was so much fog you couldn't even see the numbers counting down on the gigantic screen ten feet in front your face. So we just kinda stood there, silently. And at one moment, I turned around to look at Rett. He had this look on his face. His eyes were huge, first turning toward

one side of the square to another, and another. He was just taking it all in-every bit of it. It was like he was filing it away to go back over later. Like he really wanted to remember the moment the one when the New Year came to be. I think it meant something different to him than it did to me. He had lived to be a part of another year, of 2005 — against so many odds.

And then the ball fell and the people started to walk away, and we just kept standing there. For a bit.

I don't think Rett had much regret. Not too many people can say that about their life. On Friday night, I think Rett knew it was time to finish. I know we all wished he had slowed down a bit, but in 21 years, he felt he'd had a full life. He'd been a brother, a son, a friend, a boyfriend. And though if he could have, I know he would have chosen to stay around longer, he didn't fear dying. He told me once that death was something that would come or not. What he hated was the idea of facing it alone. On Friday night, I don't think Rett felt alone. I think he felt loved. And that's all any of us can really hope for, I suppose.

He was loved. Very much.