In the course of judging a book by its cover, it would be easy to feel sorry for Shane Burcaw. His withered muscles, caused by spinal muscular atrophy, just look sad. The fact of his utter dependence upon his family and friends for everything – including maneuvering his junk in to place so he can pee – is the stuff of my nightmares.
But, I don’t feel sorry for him. Nope. I envy him.
What?! you say. But, Laura, he looks like a bobblehead.
I don’t envy him the SMA. Only a fool would envy that, even Burcaw admits. Nor do I envy his success with his book and his blog of the same name. (Okay, maybe I’m a little envious of that.) What I envy is his attitude. That sounds trite, I realize, but still, his is the attitude I’ve only wished I could maintain. He deals with his situation and the challenges the world throws at him and moves on. He doesn’t dwell on the unfairness of his situation; he doesn’t hold the grudges against the world that will inevitably lead to my developing ulcers. Burcaw has his moments, of course. One could expect no less. He gets angry, frustrated, upset, depressed. But those are not his go-to emotions.
Part of it is beyond my control. I’ve made mention of my depression, and I don’t pretend it is something I can just “positive” away. That and the fact that a true artist’s temperament doesn’t make for an even emotional keel means that my outlook is naturally more cynical, more snark-filled, than someone else’s. People tend to confuse that with being bitter. But, while I was reading Burcaw’s books, even his more horrifying stories made me laugh. Not an easy feat. Some of it is adept wordplay, but mostly it is Burcaw’s decision that this is funny, whether you think so or not.
I also envy his social life. As of today’s count, Burcaw has had 3 romantic relationships. Exactly 3 more than I have had. Asshole.
Laughing at My Nightmare is a quick read, under 250 pages. But, it’s chock full of real life stories about navigating the world not built for people like Burcaw. You might want to feel sorry for him at first, but by the end of the book, you’ll wonder why. I hesitate to use the word “blessed,” because it has been overused to the point of losing all meaning. But Burcaw is hella lucky when it comes to parents, brothers, and friends.
He is hella lucky that he has so much support for launching his LAMN non-profit. And, he is hella lucky that it has been such a success.
Other people with SMA are hella lucky to have Shane Burcaw as their representative. Read the book. Laugh at his nightmare.
Check out Burcaw’s blog: Laughing at My Nightmare.