This book popped up in the related titles column and the title, combined with the cover, intrigued me to find out exactly what it was about.
Shane Burcaw, 21 when he wrote this book, suffers from Spinal Muscular Atrophy, and has been in a wheelchair since he was diagnosed aged 2.
He relies on other people to help him in pretty much every part of day to day life, even things most of us take for granted like rolling over in bed to get more comfortable, getting dressed and going for the toilet – of which the process is amusingly recounted to us in the book.
He started his blog in 2011, which led to this book, as a humorous way of describing living with his disease and the challenges it throws up, and soon amassed half a million followers.
Shane’s hilarious writing style makes it seem like he’s there talking to you, and his stories of having to ride on the “short bus” made me laugh out loud. His matter of fact style of writing is addictive to read, and I finished the book in one evening.
It is compelling reading, learning about the challenges Shane faced in making friends, getting people to see past the chair, and that although he was physically impaired there was certainly nothing wrong with his brain.
Also how he handles going to “cripple camp”, and playing in baseball games for disabled kids – how he felt “completely fucked up” for judging people based on their disabilities, but that his judgements were right.
“I hate to say it, but these kids made me understand how easy it is to look at someone in a wheelchair and write him off as socially awkward because he just doesn’t look normal.”
Whilst great to learn about it is also quite sad to hear how the disease affects Shane, not only physically and socially, but mentally too.
His total fear of being left alone in a house, his reluctance to ever go into hospital because he knows that one day he will inevitably go in and not come out, and dealing with the fact that he will continue to deteriorate.
Like the day that chewing food started to become impossible unless he used his hand to aid his jaw movement because his jaw muscles had become to weak.
But Shane’s positive attitude is infectious and his explanation of how he remains positive and deals with implications from SMA are brilliant to read, and really make you reassess how you think about your own life and issues you are working through.
“In ten years, will my life be irreparably and negatively changed because of this problem? If the answer is no, which it usually is, I immediately force myself to stop worrying about the problem”
I can’t recommend this book enough, for Shane’s great wit if nothing else, and it will definitely make you appreciate your life a lot more.
To find out more about Shane check out his non-profit Laughing At My Nightmare whose mission is “to spread a message of positivity while providing equipment grants to those living with muscular dystrophy”.