Jeff Baker has a terrific interview with Jay Lake in The Oregonian. Of course, it’s terrific. Jay makes it that way:
Online and in person, Lake is available, honest and articulate. His sometimes funny, always-frank reports on his medical condition attract tens of thousands of followers to his blogs and Facebook page. He’s been writing publicly about his cancer since the second day and hasn’t backed off as the prognosis has gotten grimmer.
The interview publicized JayFest, held June 8 at Powell’s bookstore in Portland.
There are details of the “Acts of Whimsy” fundraiser that brought in $50,000 for Lake’s medical expenses. And about what he’ll do with the copy of his genome that was made when doctors were hoping to find genes implicated in the cancer that might be affected by other drugs than the ones he was already taking.
“I’m open-sourcing my genome so that scientists and doctors as well as hobbyists and students can have access to a full human genome, which is very difficult to find right now,” he says. “I haven’t been able to help myself very much so maybe I can help some other people.”
Somebody could study that and come up with something that will save the world.
“That’s exactly right. That’s why I want to give it away, so that somebody else can help save the world. If that becomes true then I have triumphed over my disease. Even if I’m not here to know it. My daughter will know. You will know. Everybody will know.”
There’s been a JayCon, a JayFest and there will be a JayWake — a memorial service and roast to be held while he’s still around to enjoy it, and which he intends to enter being carried in a coffin and pop out at the right moment. The interviewer teases, “Isn’t that a lot of Jay?” But he gets a great answer, because Jay makes it that way:
“Most writers are a neurotic mess, including me if you catch me on the right day, but at the core of it you really have to believe in what you’re thinking and doing to think anyone else (cares). You’re a little bit like the 3-year-old who walks onstage during the church play and says ‘look at me!’ … There’s a level at which I’m perfectly happy to hear my name. It gives me something to be happy about at this time when most things that make me happy are being stripped away, piece by piece, never to return.”