Friday, April 19, 2013

forever young

Take that, all you uber-healthy wheelchair racer types.
A few nights ago, because I still can’t go to sleep without images and voices flashing on a screen, I started watching Sick: The Life and Death of Bob Flanagan. I remembered the documentary coming out when I was in college, and it had stuck with me—maybe because in elementary school I’d watched Alex: The Life of a Child a bunch of times. It was a TV movie about a girl who died of cystic fibrosis, the disease Bob Flanagan had, and as a kid I thought, Cool!

Bob Flanagan was prodded with needles and choked with mucous from the time he was a few months old. He knew about pain. He knew about not being in control of his body.

And so his brain did what funny human brains do, and decided to take control by liking pain. (You can’t fire me, I quit.) He became a masochist, and as the documentary reveals in his interactions with his mistress wife, the bottom is always really the one in control. He became a performance artist, and videotaped all the kinky, painful stuff he did. Some shots are a little bit sexy. A lot of shots I had to watch through my fingers because they looked so awful. He nails his penis to many things.

He was also funny—because getting off on nailing your penis to things is pretty funny, when you think about it. He played guitar at a camp for kids with cystic fibrosis and sang a CF version of “Forever Young” called “Forever Lung,” doing a pretty good Bob Dylan impression. There were silly jokes about coughing up lots of snot. But also, the truth: Those kids got to be forever young because they were unlikely to live even as long as Bob Flanagan, who was in his early forties at the time.

I studied the shots of Bob in the hospital, eyeing the camera tiredly from his wheelchair. He looked haggard and unsexy. But he looked like a person who had not lost himself. His eyes were round and dark and intelligent. This is how you do it, I thought. This is how you win even when you’re losing.

He helped a Canadian teenager and budding kinkster with CF get her nipples pierced (after she turned eighteen) in the most touching, twisted Make-A-Wish wish ever granted.

I haven’t finished the documentary yet. I guess Bob dies, or at least he has by now. I always think it’s so weird when people who write eloquently about death die; that was why Nora Ephron’s death struck me as particularly sad. I’ve always kind of subscribed to the subset of magical thinking that says if you predict something, you should be able to prevent it from happening. I am genuinely outraged that Bob Flanagan and Nora Ephron couldn’t out-trickster death by being wise and ironic.

Recently I heard on NPR that they’ve mapped the CF gene. They already have a medicinal treatment that amounts to a cure, and they’re working on a gene-based, actual cure. If Bob Flanagan had been born today, he might never have been Bob Flanagan, super-masochist superstar. It might have been the world’s loss. But what would you choose, if you were Bob’s parents? If you were Bob?

2 comments:

Claire said...

I think I'd say, "Fuck that," and choose to be healthy. Maybe he would've been a masochist superstar anyway or excelled in some other way.

Cheryl said...

Me too. And most people, I think. I think it's reductive to say that suffering = art, because lots of people are creative without major suffering, and others suffer without creating anything. But now that I've got a smidge more suffering under my belt, I like to think I'll make some better art to show for it.