My thoughts on Shane Burcaw's book Laughing at my Nightmare.

Two days ago I was on netgalley.com looking through the books listed and came across a book entitled "Laughing at My Nightmare". On the front of the book is a young man in a wheelchair and I knew from the moment I saw him that he had muscular dystrophy. His name is Shane Burcaw and the book is about his struggles living with Spinal Muscular Atrophy, a type of MD. I read the synopsis and requested the book and was granted a copy. I started reading and was instantly hooked. Shane's open and honest story about his living with SMA totally struck home. Throughout his book he uses humor to help cope with the inevitable fact that he will continue to get weaker. Shane is totally dependent on people to help him do everything from brushing his teeth, getting dressed, going to the bathroom, even turning over in bed at night. Throughout all this he laughs.

Why did this book hit home? Because I too have MD. I was diagnosed at the age of 4 with myotublar myopothy but in recent years and as research had advanced, I have discovered that this diagnosis may not be accurate and while I'm not 100% certain, I think I fit more into the SMA category. As I look at Shane I see myself. His posture in his chair is like mine, his weakness in certain areas of his body are like mine, even the medical issues he has dealt with are the same. But its not just about the physical difficulties that struck me about this book. It was the emotional and social struggles he faced that felt familiar. Shane discusses his worries about making friend when he went to school, being unsure if kids his own age would accept him because of his chair. I have dealt with the same issue. I remember my first day in middle school being terrified that other kids who weren't from my elementary school would make fun of me because of my chair. Being the only student in a wheelchair in regular classes tends to stick out. I remember other kids being assigned to help me with things and some of them being not so thrilled about it. Shane talks about kids his age breaking off into pairs as they grew older, going to dances and on dates. While I had an amazing group of friends who always made me feel included, I always felt left out because I never had a boyfriend and finding a date for homecoming and prom was a nightmare. ( Thanks to my cousin Sean for stepping up and taking me. You are my hero forever.)

Another big part of Shane's book that struck me was he didn't identify himself as being different than anyone else. Even when he went to MDA camp, he felt different. Something I felt as well. I was never treated different at home by my family and I was expected to act as if I were am able bodied person. I was never pitied and wasn't allowed to feel sorry for myself. (Thank you Mom and Dad). I was expected to be part of society. This concept seemed to not be part of the other kids who went to camps at lives. I loved MDA camp don't get me wrong, but sometimes I just felt like the odd man out.

The final thing that really struck home for me in Shane's book was his discussion on relationships. I've never had a boyfriend and as I get older and my friends are getting married and having families, I sometimes wonder if that is going to be part of my life. Shane talks in his book about people, especially the opposite sexes, view of someone who looks the way we do. This is the part where people who know me are going to be like "oh there is nothing wrong with how you look" but just go with me here people. I weigh 65lbs. I lean forward almost 90 degrees and my head tilts back so I can see. I'm sorry but I look different. People stare especially kids and it hurts and sometimes I think, is there any man out there who is going to see past that? I don't know, that's not something I can answer but it stick in my brain sometimes. Shane, in his book, talks about meeting his girlfriend Shannon, and it gives me hope. I know everyone keeps telling me that he is out there somewhere but at this point I'm starting to think he either fell off his horse or took a left at Albuquerque.

My point in writing this blog is first to encourage you to read Shane's book when it comes out in October. While there is some language, his message is clear, Laughing at yourself is the best way to cope. He has even started a non-profit which helps raise money for MDA research and he speaks all over the country. The second reason is because I want to start sharing my experiences with people. God has been the solid foundation in my life and I want to share that but I also want people to know that even though I live my life on 4 wheels I am just like everyone else (and even cooler than some) jk. So read, think, and enjoy. If you wish to comment please do, just be respectful of not just me but anyone else who may be reading this.