Laughing at My Nightmare
Format: PDF / Kindle (mobi) / ePub
With acerbic wit and a hilarious voice, Shane Burcaw's Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a "you-only-live-once" perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.
The days of walking in single file lines, led by a “Line Leader,” were long gone. In elementary school, when the teacher said, “marshmallows in your mouth,” everyone had to pretend their mouths were full of marshmallows and got completely silent. In middle school, no one followed the “marshmallows in your mouth” rule anymore. Let’s be honest, the hallways of East Hills Middle School were not an avalanche; they were a chaotic clusterfuck. Decency was thrown out the window and replaced with
with my catlike reflexes and determination to win made quite an impressive team. There was the time the street in front of our house froze over and we had races on the ice until my entire body was frozen solid. There was the time I missed the birth of my firstborn son because I forgot to charge you the night before. (That never happened, but I have missed countless events because I’m an idiot and almost never remember to rejuice my battery at night.) There was the time I burned holes in your
decided to kick me a different kind of ball. This ball was much softer than a normal soccer ball, so by the time it reached me on the other side of the court, it was carrying very little momentum, not enough for me to pass it all the way back to him. I stopped the ball with my wheel and then backed away from it until I was about twenty feet away. My plan was to gather some speed before I made contact with the ball. In a moment that still seems unreal to me to this day, I drove my chair at top
friend’s house. Becca and I sat outside all afternoon getting tan, and I drank a can of Pepsi when it started to get unbearably hot. Around three in the afternoon I realized I wasn’t going to be able to stay at Becca’s house much longer because I really needed to pee. The cup of coffee I had when I woke up, combined with the can of Pepsi, was finding its way to the end of my bladder. Going to the bathroom is a relatively complicated process for me. This is how it used to work: someone gets me
clawing the walls of my throat every time I swallowed, talked, or moved. Great! A tiny voice in the back of my head kept saying, “You’re going to have to do this every fucking night from now on.” I reasoned with myself that the first time was the worst and pretty soon I wouldn’t feel the tube at all. I turned out to be right. Each night in the hospital became a little easier than the last. I started getting good at having the tube put in without gagging, and before I knew it I was home and back