Laughing at My Nightmare by Shane Burcaw
(Description nicked from B&N.com.)
“With acerbic wit and a hilarious voice, Shane Burcaw’s Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a “you-only-live-once” perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.”
I was reading the children’s/young adult recap issue of Publishers Weekly when I saw the starred recommendation for this book. I’ve been trying to read more non-fiction, just for variety, and it sounded like a funny and enlightening read. A few minutes later, I was downloading it onto my Nook and dove right in.
Boy, they’re right when they say it’s a no-holds-barred biography. Burcaw talks with incredible candor about aspects of living with a disability that I’m sure everyone is curious about but would never dare to ask about. And it’s not just the bodily functions that people want to know about (although I’m sure that’s a lot of it), but the effects of his disease on his family, because how can we imagine what it would be like to have a family member so dependent on us? I give mad props to his parents and brother, because if everything he says about them is true, they’re extraordinary people.
Quite apart from the more lurid parts (how does he use the toilet anyway?), the author does an excellent job at giving readers a sense of his condition’s progression. It’s one thing to say “I have a disease where my muscles waste away”, but it’s quite another to realize that this means being unable to chew food without pushing your jaw up with your hand. He also delves into the mindset of constantly adjusting to his deteriorating body. The sections where he has difficulty breathing or weeps over the thought of his death are some of the most affecting parts of the narrative.
Burcaw talks a lot about his attempts to live as normal a life as possible, and he describes going to parties and hanging out with friends. He has girlfriends; he goes to dances; he applies to college. He goes through all of the normal “milestones” that teens everywhere experience. Of course, as the book progresses, Burcaw has to take an honest look at what it means to be “normal” and adjust his thinking accordingly. Even so, there are times that he seems to denigrate others with different varieties of developmental disabilities, and that made me a little uncomfortable.
In a way, the structure of the book contributes to some of my discomfort: Burcaw sometimes seems to be pounding on how much time he spent thinking of how to fit in and make people like him, and while I can certainly understand the feeling, hammering on it just comes off as self-absorbed. I think that if the author had structured the book so that each chapter tackled specific aspects of his disability, instead of trying to tell a chronological story that ended up skipping around time-wise, it might have flowed better. I’m pretty sure it would have focused the information so that his need for acceptance didn’t permeate so many page.
For the most part, I enjoyed this book. It gave me a good look at a life that I would never have known about otherwise, and I appreciate his frankness and willingness to open his life and thoughts to the world.
This book was a personal purchase.