Shane Burcaw became a Tumblr sensation by chronicling his life with spinal muscular atrophy on his blog, Laughing at My Nightmare. His warts-and-all-style earned him more than half a million fans. His memoir, also called Laughing at My Nightmare, is out on October 14.
If I had to choose a theme for my upcoming memoir, Laughing at My Nightmare, it would be the absurdity of living with my disability. I was born with a disease called spinal muscular atrophy, and it has been making life pretty ridiculous since I was a baby.
I got my first wheelchair at the age of three, and my favorite activity quickly became crashing into walls at full speed. Looking back, it seems silly, but at least my favorite activity wasn’t running people over or trying to drive down flights of stairs.
The wheelchair gave me incredible freedom, and, naturally, I used this freedom to get into trouble. Driving through dog poop became a new source of joy, (God, I was weird) which is a mostly harmless behavior until I came inside and drove those poop-covered wheels across the white rug in our living room. Mom was not pleased.
As I grew up, my interests turned to sports, which was not the best combination for a severely disabled boy with no regard for his own safety. My friends and I found ways to involve my wheelchair in every sport we played, often at the expense of their personal well-being. Do you know what it feels like to be tackled by a 400-pound wheelchair? My friends unfortunately do.
In school I grappled with the constant pressure to fit in, as most kids do, but my desire to be seen as “normal” despite my disability caused me to go to some extreme lengths that make me cringe today. I tried to be a hardcore skateboarder thug in middle school, grew my hair out, and held on to that identity until I finally accepted that the drug-taking, rule-breaking, hygiene-ignoring lifestyle just wasn’t for me.
Life became more serious in high school as I began to seriously contemplate the realities of my disease. I am constantly getting weaker—arms, legs, neck, jaw, lungs, throat, the whole shebang. I realized I probably would not live a full life when every tiny head cold put me in the hospital for a week. This is when I began to develop the mindset that would help me become the person I am today: the idea that laughter and positivity are powerful weapons against adversity.
In college, I began blogging about this topic, telling stories about breaking my femur and peeing in my pants and falling in love. To my complete surprise, the world enjoyed what I had to say! In a whirlwind adventure that is still taking place as I write this, my blog grew to over half a million readers, I started my own nonprofit organization, I got a book deal, and I even had a few serious relationships with actual human females!
You can read about all of that in my book, and lots of it probably won’t seem like real life. As you read, just know that I have been feeling the same disbelief every step of the way (every roll of the way?).
Life is crazy and it’s beautiful and it’s awesome, and I can’t wait to share mine with you.