Burcaw - Laughing at My Nightmare

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To my mom, Sue;
my dad, Jon;
and my brother, Andrew.

I fucking love you guys.

Contents

introduction

The forest of pube-y leg hair sprouting from my brothers calf bristles the tip of my nose as he stands over me on the floor of our rented minibus, yanking my shorts off. I try not to laugh, since my bladder is on the verge of exploding after seventeen hours of driving down the East Coast of the United States. Until now, I have chosen to hold my pee despite stopping at multiple rest areas along the way. Highway bathrooms tend to be pretty shitty for people in wheelchairs and I cant sit on a normal toilet, so when I have to pee, I use a travel urinal that someone holds under my penis. I have to be lying down to do this, and the floor of a highway restroom is by far the least desirable place to lie in the entire world. So there I lie, in the tightly cramped quarters of our tour bus in the parking lot of a Wendys in Daytona Beach at two in the morning while Andrew maneuvers my penis into the little red travel urinal that I carry everywhere I go. We would have a lot more room if it werent for the three cameramen surrounding us, capturing every angle of this intimate moment. I close my eyes, attempting not to accidentally make eye contact with a member of the film crew. Making eye contact will disrupt my stream.

It probably looks like we are filming a multi-fetish porno involving severely disabled people and urination. The back of the van is wide open, and I worry that a stranger might walk by. Although I guess it wouldnt be the worst thing that could happen. Besides, Im used to people staring really hard at me. Whenever Im out in public, it is pretty much a guarantee that several people will make it completely obvious that they have never seen someone like me before. By someone like me I mean an alien-like pterodactyl creature with a human head that uses a wheelchair. Okay, thats a slight exaggeration, but I must look awfully messed up if the looks I receive are any indication.

Because of a neuromuscular disease Ive had since birth, my arms and legs are slightly fatter than a hot dog. My elbows and wrists are extremely atrophied; they look exactly like Tyrannosaurus Rex arms when I hold them against my chest. I am a few inches shy of five feet, and when I sit in my chair, it seems like Im even shorter. My head is normal human size, which looks ridiculously funny/creepy sitting on top of my tiny body. Imagine a bobblehead doll in a wheelchair. I dont even blame people for staring. If I were a stranger, I would probably stare at me, too.

Over the years, I have gone through many methods for dealing with people who stare at me. When I was younger, I used to make scary faces at other little kids who were mesmerized by my chair because I got a kick out of their reactions. During middle school, I went through a stage where the constant stares really got under my skin. I remember doing things like approaching people who stared to ask them what they were looking at, pretending to cry to make an onlooker feel like a terrible person, and outright lying to people who had the balls to ask me questions about my disability. I would tell people that I was in a car accident that killed my whole family. I was young and stupid then and didnt know how to handle my situation.

I eventually got over my aversion of being stared at, which is why I am now okay with being filmed as a part of a documentary about the inaugural speaking tour of my nonprofit organization, Laughing At My Nightmare, Inc. It is only our first day on the road, and I am already discovering how ridiculous the upcoming week is going to be. When the pee jar is full, my brother hops out and rinses it out in the parking lot with half a bottle of Gatorade. Wendys is closed at 2 a.m., and none of us wants to be in a van with a jarful of stench.

My mom would have a heart attack watching us improvise ways to take care of me on the road. But she is a thousand miles away at our home in Bethlehem, Pennsylvania, along with my dad. For the first time in my life, I am free.

This has not been the case for most of my life. I was born with spinal muscular atrophy, a disease that basically causes my muscles to be extremely weak and to deteriorate as time progresses. Based on other books Ive read by people with illnesses of some sort, this is normally the part where they dive into a painfully dull discussion of science and other stupid things that I dont care about. For the sake of my story, all you need to know is that physically, I am superweak, and constantly getting weaker. I have never walked. Ive never even crawled. Ive been in a wheelchair since I was three years old, and have relied on other people for pretty much every aspect of staying alive since I was born. Are you starting to see how my circumstances might hinder a sense of freedom?

So, how the hell did I end up a thousand miles away from home on an East Coast speaking tour with only my younger brother, two of my best friends, and a camera crew filming me pee? I have no idea. Life has been pretty surreal over the past few years. But when I really think about it, my existence has consisted of nothing but one absurd event after another.

I have always approached the problems in my life with a sense of humor. A big reason this book exists is because of the blog where I started to tell funny stories about my life. That blog, also titled Laughing at My Nightmare, has over half a million followers today. I guess wheelchairs are just in right now.

This is the story of life from the seat of my powered wheelchair as it has transpired during the first twenty-one years of my life. I might be dead by the time this book gets published, or I might not be. Either way, I hope for nothing more than to share my story with you and make you laugh.

chapter 1

a normal day

The sound of my cats trying to kill each other startles me awake. Oreo and Roxy dont get along very well, probably because Oreo is a prissy prima donna who cares only about herself, and Roxy has an inferiority complex. Every other day, Roxy snaps and attacks Oreo in an attempt to end her existence and become the sole recipient of my mothers love. Their death battles sound like a hurricane smashing through the house. I groan and look at the clock that hangs on the wall next to my bed, 9:45 a.m. Too early. Let them kill each other. I fall back asleep to the soothing sounds of Roxy tearing Oreo to shreds.

Fun Fact

I drool so much overnight that I have considered hiring a lifeguard to watch me while I sleep.

Only forty-five minutes pass until I wake up for a second time. Ive never been good at sleeping in. This time, the sun slicing through my bedroom window has stirred me from sleep. I groan again.

Andrew, can you get me up? I call. I hear a groan escape his bedroom through his partly opened door. Mom opens it every morning before she and Dad leave for work to make sure he can hear me. I know he heard my call, but it wasnt enough to will him out of bed. I wait for a few minutes, considering how annoyed Id be in his situation. I call him again.