A number of people have asked me why I wrote a book that revolves around organ donation. The answer is simple: Three individuals I care about a lot have either needed or donated organs. So it’s a topic that has touched my life again and again.
The first is Zane Spillman. Zane and I worked at a Marriott hotel when I was 20 and he was 21. I knew we would be friends as soon as I met him, because we both loved Insane Clown Posse. Not ironically, either. Zane took me to my first rave, at the derelict and now-bulldozed Bellemont Hotel. He taught me to dance, to make a pipe out of a Coke can, and to love Jesus, even though there was nothing pious about our lifestyle. He died at age 30 after being brain-dead for five days following his third overdose. Brian, his ex, told me Zane donated his organs. He saved four lives.
I wouldn’t have known Lauren Zehr if not for Zane. I met her at a rave. She was a candy kid, all glitter and smiles and plastic neon-hued bracelets she wanted to share with you. But after the party, she’d sing sad Fiona Apple songs in a low, husky voice full of pain. Lauren had cystic fibrosis, and on top of that, she was bipolar. So she probably shouldn’t have been spending her nights in smoky clubs full of crazy party people, but she loved being Butterfly Dreams (her rave name), flitting through that scene. And when she’d land in the hospital, we’d visit her, a gang of kids in their late teens and early twenties, wearing phat pants and sneaking her the fast food she’d requested. Lauren’s lungs failed when she was 27. She died waiting for a transplant. I interviewed Lauren’s mom, Charlotte, for Gambit in 2011 because I had so many questions about organ donation, which Charlotte fielded with grace and candor. The story is here.
On my first date with Jonah Bascle, he told me he needed a heart transplant. I touched the outline of his defibrillator through his skin. I knew it was a bad idea to date a guy with a failing heart and muscular dystrophy, but I liked him. He was a stand-up comedian. He was a mayoral candidate, running on a single-issue platform: to make the St. Charles streetcar wheelchair accessible. He was an artist, an activist and a director. By the time his heart failed, we had been broken up for a couple years, but I visited him in the ICU, anyway. He couldn’t talk, because he was on a ventilator. He died six days later. He was 28.
I’ve done a fair amount of research about organ donation, mostly trying to answer the question WHAT ARE THE CHANCES THAT THIS THIS PERSON I LOVE IS GOING TO GET A NEW HEART/LUNGS? I also wonder, how do doctors measure the worthiness of a human life? How do they decide who gets to live and who doesn’t? I wonder about what it would be like it we had ways to clone organs so that young people wouldn’t have to die just because they were born with mutations in the CFTR or DMD genes. I still love Zane, Lauren and Jonah. I miss them. So I grappled with that loss, and those questions, in my book. And that’s why it centers around organ donation.