I recently read a book called Laughing At My Nightmare, written by Shane Burcaw. It is an intriguing autobiography about Shane and his struggles with Spinal Muscular Atrophy, which is a type of Muscular Dystrophy. Surely he recounts all of his struggles throughout his early life but he presents these stories in such a unique way. He believes that humor is a necessary aspect to life especially when living with a deadly disorder. Instead of getting angry when things go wrong, he sees a way to laugh about a situation. For example he made fun of how people always tell him that they are so glad to see him out and about. He finds it hilarious that many do not know how to speak to disabled individuals. As a disabled individual myself, I can vouch that I encounter these situations all the time when I go out. One time, some lady at the mall wanted to see my hands, because she thought that I was somebody that she knew
Anyway this was a great book and easy to read. He, for the most part, wrote in chronological order, and even stuck in jokes on the side which were hilarious. In the beginning of the book he explains basic information about his disorder and reveals his morning routine. Interesting that his routine is quite normal in that it basically includes Netflix and coffee. Anyway in the following chapters, he reveals that he has used a wheelchair his entire life. He had a tough journey but still managed to make many friends in school. I remember that in one instance, Shane used his wheelchair to help his friend and brother dunk in the basketball net. They wrapped rope to his chair and then on the net while hoisting his brother up to dunk the ball. It was a crude pulley system but afterwards Shane’s chair was malfunctioning and wouldn’t reverse properly. His dad was surprised but happy that Shane was behaving like a normal kid.
In middle school he was afraid because he did not think he would befriend anybody. As a first test, a pretty girl was assigned to the seat next to him. He was nervous but introduced himself and cracked a few jokes that made her laugh. He made more friends and he got reacquainted with his cousin, who helped him in class even through high school. What really helped him make connections was his personality and his ability to make people laugh. High school was a breeze for him and he had a free pass to “see the nurse,” which meant that him and his cousin would roam hallways when they were bored. Shane was somewhat of a troublemaker, which made him just one of the guys. However, that quality has come back to bite him and affected him medically. He recounts a difficult story when he was trying to hit a ball with his chair. A small group of students and the gym teacher were passing it around but he revved up to smack the ball. Next, the ball got jammed in his wheel and his body went flying and crashed to the ground. He tried to say he was fine but he broke his femur, a compound fracture. This was a dark time for him and he had to lie on a hospital bed in a lower body cast for a whole month. He even said that was a rough time but was still very optimistic.
The best part of the book was towards the end when he talks about his blog, his nonprofit organization, and his recent girlfriends. I actually met Shane at a MDA Young Adult meeting at Children’s Hospital of Philadelphia and these were the things he was mostly talking about. He recalled in both the book and at this meeting that he was at a point in college when he wanted to write his feelings and thoughts but was nervous about expressing his ideas on a tumblr blog. He started writing anonymously and recanting funny stories about his everyday life being disabled. Everything after that just took off for him. He had people saying how his stories helped them through difficult times. That led him to meet women through his blog. One woman became his girlfriend and they made out a lot apparently. ..hehe. The other woman helped him with the creation and vision for his nonprofit and became his next girlfriend. (His nonprofit, Laughing At My Nightmare, is doing great and assisting those with Muscular Dystrophy to get supplies that they need.)
I learned a lot by reading this book. I liked his positive outlook on life and it is amazing how he can laugh about his situation despite how grim living with Muscular Dystrophy really is. I want to emulate his positivity and learn to just laugh and not be worried so much over factors in life that I cannot control. Shane is a true example of how having an open and positive personality can truly open doors not only for himself but for others. He is a great guy and at the meeting he even signed my copy of his book. I previously told him that I was also writing an autobiography and he wrote that, “I can’t wait to read your book I’m sure it will be better than mine.” I doubt that because his book was hilarious and very inspirational. My book’s main focus is on the good and the bad of living with Duchenne Muscular Dystrophy. But I will now try to be a little more positive and not get bitter over the past. I only currently have 35 pages typed but progress is progress no matter how small. My book should be out within 2 years or less.