“Shane Burcaw … is razor smart, irreverent, and laugh-out-loud funny. I would help change his underpants anytime.” ~Rainn Wilson
I have trouble sleeping because I’m terrified that my body will decide to stop breathing while I’m asleep. I’ve been living with this same fear for the last ten years, and it’s only going to get worse as I get older.
Welcome to my life! It’s pretty funny, and I’m excited to share it with you.
My name is Shane Burcaw. I’m a 21-year-old from Bethlehem, Pennsylvania, and I was born with a progressive disease called Spinal Muscular Atrophy (SMA) that causes my muscles to waste away. A few years ago, I chose to start living in the moment (vomit, what a cliché, I know, but hear me out) and the results have been astounding. In fact, I’d even go so far as to suggest that you try it too (living in the moment, that is. Don’t try SMA).
Long story short: Twenty-one years ago my parents thought I was the laziest baby on Earth. They took me to a doctor, and the doctor said, “Nope, not laziness, just a severely debilitating muscle wasting disease.”
What a relief.
I started using a wheelchair when I was three, learned that I could use my 300-pound chair as a weapon by the age of four, and began pondering world domination at five.
The nature of SMA is as follows: No doctor has ever told me I’m going to die at a certain age. However, most people with my disease die between their 20th and 30th birthdays. As more important muscles in my body begin to fail (i.e. chest muscles that control breathing) it becomes increasingly more likely that I will zonk out from something lame like a minor cold or my lungs giving up while I’m asleep.
I began to grasp this reality a few years ago when I turned eighteen and realized I could no longer raise my hands to my mouth. My muscles were getting worse, and there was nothing I could do to stop the decay. The awareness of my own mortality was one of the scariest, most positive things that ever happened to me.
“Uh, what are you talking about Shane? That’s sad as shit.”
Not really. Everyone dies. Opening my eyes to the fact that I could be gone in 2, 5, or 20 years inspired me to throw myself at every single day with as much intensity as my little body could muster. I wanted to make the most of my time here.
I started a blog to tell funny stories about my life. To my amazement, it took off. I had over half a million followers within a year. People were e-mailing from Africa, Brazil, Australia, you name it, to tell me how I was inspiring them to live more positive lives. It was incredible, and it was all coming from some silly stories about breaking my femur and riding the short bus.
During that first year, I learned that my biggest fear isn’t dying; it’s leaving the world unchanged. I desperately want to make a significant positive impact while I’m here. So the next thing I did was start a nonprofit organization. Laughing At My Nightmare, Inc. is an extension of the blog. Our mission is to spread positivity and raise funds for muscular dystrophy research. Starting a business as a sophomore in college was quite an adventure, especially when we began going on speaking tours and producing Emmy-winning videos.
Along the way I had the incredible opportunity to write a book about my life. This humorous memoir (also called Laughing at My Nightmare) covers everything from my childhood, to my trials and tribulations with dating and sex, to never before told stories about my past life as a disabled bounty hunter. It comes out in October of 2014, but you can preorder it below! (If you’re on the fence about ordering, imagine my tiny little naked body, shivering in the gutter of a dirty street. Do you want to do that to me?)
I’ve been pretty busy, but I’m nowhere close to being done. I’m not sure where I’ll be health-wise in a few years, which is why I wake up every day with a sense of urgency. I’d invite you to look at your own life and ask yourself if you are spending every minute of every day making the most of your time. Get involved in projects. Create things. Meet people. Build relationships. Take risks. Have fun! (I’d be lying if I said I don’t play my fair share of FIFA and take days off to relax and eat junk food).
It doesn’t matter if you have a progressive muscle wasting disease, or you don’t like your job, or school is really hard, or whatever your adversity might be. There’s always a reason to be happy.
You only get one life, so fucking live it.
Pre-order Laughing at My Nightmare by Shane Burcaw: