I'd tried it before and failed. I didn't want to spend four hours every day writing about being sick, but on the other hand I couldn't conceive of a character and a life that didn't involve CFS. So I wrote 600 words and gave up. This time, I thought, I would take a different approach, I would write about a real person: spend half the time reading/researching and then turn it into writing. My inspiration for this idea was Laura Hillenbrand, author of Seabiscuit, whose own CFS story I've always kept a link to on my blog. One line kept coming back to me, "I hung Red's picture above my desk and began to write."
So that was my plan for the month. I printed out some pictures of virtuoso thereminist Clara Rockmore and have been writing every day since. I don't care that before she died she sold her life right's to Sony, or that there's a real writer and musician out there working on her biography and planning to publish it next year. I just wanted something to write about to see if I could still write. Because even though I love Laura Hillenbrand's story, I can only partially identify with it. Like this quote from the USA today article about her and her new book:
She went from being a college student suffering from apparent food poisoning to dropping out three weeks later. She visited doctor after doctor who assumed her symptoms — profound exhaustion, weight loss — meant she was depressed or anorexic until an expert at Johns Hopkins diagnosed her with CFS.
For me it didn't happen exactly the same way but I also had to drop out of college my sophomore year. I was labeled depressed and anorexic until I was finally diagnosed with CFS. But the difference between us, I thought, was that she could still write. Sure, the part of her brain that kept her balance was shot out, but the part for writing was still fine. The writing area of my brain was shot. Gone. She went to Kenyon college in Ohio, I grew up in Ohio and thought about applying to Kenyon college because it was a college for writers, and I'd wanted to be a writer, until my senior year, when I suddenly and mysteriously couldn't write anymore. Or do math. Or go out much.
These past two weeks have been good for me. Every day I write it's like I'm climbing out of a hole. I'm just one day behind schedule. (From the day before I got my period, always a lost day...) Reading the USA today article though, profiling Laura, relating her suffering from CFS to the suffering of her subject in Japanese POW camps, it pulls me back down, somewhere. It makes me relive my own story, and it's hard for me to take.
I wish I could express exactly why I like Laura Hillenbrand so much. I haven't read her book, though I'm planning to. I just...I admire how she talks about her illness in interviews. I love how she knows what to say and what not to say. In a WSJ interview she talks about how Seabiscuit is about accomplishment and Unbroken is about survival, both in the face of tremendous suffering. And that's all she says. I don't know. She tells the truth. "'This is going to be hard,' she says. 'I'm very afraid. I'm not functioning well. I'm going to have to be careful that I don't slip back to the bottom.' " She doesn't take leaps of faith or make projections. She's not an inspirational speaker, like her latest subject. She's a novelist. And a really good one.
The Wall Street Journal article opens with a description of the now 93 year old hero of her new book, and how he doesn't let old age get him down and still trims trees with a chainsaw every day or something. "I have a cheerful countenance at all times," he says. "When you have a good attitude your immune system is fortified."
Blah, Blah, Blah...Fuck you, war hero! So that means it's my own fault I'm sick because I wasn't cheerful enough?
See, that's what I thought when I read that. But best selling novelist Laura Hillenbrand would never think that, right? And if she did she wouldn't write it.
I took a year off after high school before I went to college, hoping I'd figure things out, overcome my mysterious depression, and my mysterious writer's block. I read a book about procrastination with a clever title, "The War of Art." I can't quote from it directly because it's at my old bedroom in my parents house, it's not a book I want with me. But there's one part where the author, historical fiction writer, Steven Pressfield talks about people who get cancer and, faced with death, quit their jobs and move to New Mexico to live their dream of being a painter. "And what happens? The cancer goes away."
I was 18 when I read this. Young and impressionable. Now when I read something like this I just ignore it. But then it sounded like a secret magical key to life. And it stuck with me and I keep having to stomp it down. Yes, an illness can cause you to reevaluate your life and inspire you to do what you really want to do. But that's not going to save you from it. It didn't save Laura Hillenbrand.
I'm cynical. I'm in my 20s. And, I have a greatly debilitating, highly misunderstood disease. And yet, what did I want to write about? Clara Rockmore. I saw her in the documentary Theremin: An Electronic Odyssey. I can't say for certain now but I think it gave a fairly one dimensional picture of her. She was a virtuoso thereminist and Theremin was in love with her. End of story. But then I looked her up on wikipedia and, it said she had been a classical violinist and had only taken up theremin when arthritic arm pain from a childhood of malnutrition ended her violin career. Then I got interested. What's that? Overcoming physical limitations and succeeding? Yes...tell me more of that story...
I was as interested in reading the comments section of the USA Today article as I was the article itself. Whenever there's an article about CFS that merges with the mainstream, there's always comments from PWCs who want to use the opportunity to really make clear how much we suffer:
Sharbear wrote:3d 6h ago
Living with that disease is hell. I wish her only the best.
And then there's the ones you hope for, the kind souls who see the light:
Ripleybird wrote:3d 7h ago
I knew she suffered from CFS but had no idea of the degree to which she suffers. I wish her the best and am keeping my fingers crossed for more stories.
And then there's this one:
hoosierbo47 wrote:3d 12h ago
The central theme of existentialism: to live is to suffer; to survive is to find meaning in the suffering. Both Hillenbrand and Zamperini have found their meaning in their lives. Two courageous individuals, for sure.