Shane Burcaw was diagnosed with Spinal Muscular Atrophy when he was only two. SMA is a genetic disease which is the number one killer of children under the age of two. According to Families of SMA, the disease destroys the nerves controlling voluntary muscle movement, which affects the ability to crawl, walk, control head and neck, and even swallow. Most individuals diagnosed with SMA do not survive beyond the age of 10, but some such as Burcaw have lived into adulthood.
According to Burcaw at Tumblr, “Basically, all of the muscles in my body are extremely weak, because I lack the protein necessary for muscle creation. My disease won’t kill me by itself, but it is progressively getting worse, so eventually (I’m hoping not for a long time) I will get sick and it will turn into pneumonia and my body won’t be able to fight it and that will be the end of the road. Living with this awareness of my uncertain future has really molded me into the person I am today.”
At twenty-two years of age, Shane Burcaw has accomplished more than many adults. He has graduated from Moravian College. He hosts a blog called Laughing at my Nightmare. He has written the story of his life in a book of the same title. He has also started a nonprofit to spread positivity and to raise money for families affected by muscular dystrophy.
Burcaw’s family and friends are a huge part of his life, which you’ll discover by reading through some of his blog posts. He has been in a wheelchair since the age of two and loves to laugh. In 2013, he made his first trip without his parents, when he drove from his home in Bethlehem, Pennsylvania all the way to Disney World. Daily Mail reports that this was Burcaw’s first time being away from his parents because his disease makes him reliant on them for almost everything physical. Along the way to Disney World, Burcaw also made several trips to other cities to speak with readers of his blog.
Burcaw started his blog one summer afternoon, partly out of sheer boredom and partly out of an urge to write. He tells YALSA, “Looking back, I think I was battling a subconscious fear of being forgotten around that time in my life. I’ve been living with the reality that my disease will kill me someday since I discovered that truth in middle school, and leaving an impact on the world, making my time seem worthwhile, has always been crucially important to me.”
This latter thought, however, wasn’t at the forefront of Burcaw’s mind when he decided to write the first post. According to YALSA, he just wanted to make people laugh. As the blog began to grow, Burcaw discovered that readers cared about what he had to say. Moreover, readers from all across the world were emailing him to thank him for inspiring them! Although this hadn’t been his initial purpose, by accepting that humor and positivity are powerful concepts, Burcaw found he could help people.
In fact, Daily Mail reports, teen Shannon O’Connor is proof that his blog has had an impact. The two got to know each other when she started reading his blog after her mother died of cancer. When Burcaw asked readers to volunteer with his non-profit, O’Connor stepped up and now the two are best friends.
The idea for his book, Laughing at my Nightmare, came from Burcaw wanting to take his story to the next level. Burcaw wrote the book in college. He admits to YALSA, “Just like a typical college student, I procrastinated tremendously. I’m a fairly quick writer once I have an idea, so I told myself I could bang out a book in a few weeks once I set my mind to it. HA HA.” Although writing is Burcaw’s biggest passion, he soon discovered there were moments when it’s also the most frustrating and scary thing he could do. Indeed, He experienced many of those moments in the weeks before my manuscript deadline.
Bethlehem Area Public Library notes that one of Burcaw’s early concerns was that his publisher wanted it to be a young adult book. Burcaw worried that they might censor him to make the book appropriate. After several discussions with my editor, he realized that his editors wanted Burcaw to tell his story in his own way. As a result, there is a lot of swearing and sex and other mature topics that might not be the best for younger readers, but does honestly reflect Burcaw’s life. Burcaw believes teens will identify with his story.
Not all press has been positive. Bad Cripple argues that laughter is NOT the best medicine. However, Burcaw maintains, “The way I look at it is my message is not, ‘Hey I can be happy and so can you.’ ” He tells Daily Mail, “All I’m doing is saying, ‘This is my life, this is how I handle it.’ If I can give someone a new perspective because of that, that’s awesome.”
I’ll be back later in March with a review of Laughing at my Nightmare. Because I have spring break, March will be a little different for my posts. The first week I’ll post daily teasers and the second week I’ll post daily reviews. Save the date for my review of Burcaw’s book: March 9!