by Shane Burcaw
laughing at my nightmare
Text copyright © 2014 by Shane Burcaw
Published by Roaring Brook Press
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To my mom, Sue; my dad, Jon; and my brother, Andrew.
I fucking love you guys.
introduction
The forest of pube-y leg hair sprouting from my brother’s ankle bristles the tip of my nose as he stands over me, yanking my shorts off on the floor of our rented minibus. 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. I can’t sit on a normal toilet, so when I just have to pee, I use a travel urinal that someone holds under my penis. I have to be lying down to do this, and floors of a highway restroom are 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 Wendy’s 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 weren’t 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. Since the back of the van is wide open, I worry that a stranger might walk by. Although I guess it wouldn’t be the worst thing that could happen. Besides, I’m used to people staring really hard at me. Whenever I’m 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, that was a slight exaggeration, but I must look awfully messed up if the looks I receive are any indication.
Because of a neuromuscular disease I’ve 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 I’m 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 don’t 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 reaction. 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 at me 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 didn’t 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. Wendy’s 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 a disease called spinal muscular atrophy that basically causes my muscles to be extremely weak and to deteriorate as time progresses. Based on other books I’ve read by people with illnesses of some sort, this is normally the part where they dive into a painfully dull discussion of science and prevalence and other stupid things that I don’t care about. For the sake of my story, all you need to know is that physically, I am super weak, and constantly getting weaker. I have never walked. I’ve never even crawled. I’ve been in a wheelchair since I was two years old, and have relied on other people for pretty much every aspect of staying alive since I was a born. Are you starting to see how my circumstances might hinder a sense of freedom?
So, how the hell did I end 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 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 don’t get along very well, probably because Oreo is a prissy prima donna who only cares 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 mother’s 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.
Only forty-five minutes pass until I wake up for a second time. I’ve 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 wasn’t enough to will him out of bed. I wait for a few minutes, considering how annoyed I’d be in his situation. I call him again.
“Yea, one sec,” he calls back, still half asleep. I don’t sense annoyance in his voice, and I hardly ever do. He knows I need him.
Andrew groggily enters my bedroom wearing a pair of basketball shorts and no shirt. As per usual, we don’t talk much as he helps me get ready. He pulls my blanket off, rolls me onto my back, a
nd after grabbing a pair of shorts from my dresser, gently and meticulously pulls them up my legs and over my butt. The shirt he chose is a little stubborn getting over my left arm, but he gets it on after a few tries and manages not to break any bones.
I drool so much overnight that I’m considering hiring a lifeguard to watch me while I sleep.
“Do you need to pee?” he asks.
“No. I’ll wait til later,” I say.
“Good, because I wasn’t going to do it, anyway.”
My little brother leans over the bed and slides his arms under my knees and behind my shoulders, lifting and carrying me to my wheelchair. He sits me down gently, almost getting me in the perfect position (a nearly impossible task). He unplugs my phone from the charger and sets it on my lap, walks to the kitchen to pour a cup of coffee, which he leaves on the edge of the dining room table for me, then comes back into my room. “I’m going back to bed. Are you good?” He asks. I thank him and drive to the dining room to find the coffee that will inject me with the energy to make it through the day.
This is how Andrew lifts me.
My laptop is sitting next to the cup of steaming coffee (more like coffee-flavored milk, Andrew made it very sweet). Part of Dad’s morning routine—after getting me up at 6 a.m. for a shower and putting me back in bed afterwards—is to open my laptop on the edge of the table so I have something to do when Andrew goes back to sleep. I can’t physically type on a keyboard or lift the cup of coffee to my lips, but like all daily tasks, I’ve found ways to improvise. I have an app for my iPhone that transforms it into a wireless mouse pad and keyboard (I love you, Apple). Sticking out of my coffee is a super long bendy straw that I order off the Internet. It is long enough so that the straw reaches my mouth when the coffee is sitting on the table. Little adaptations like these are what allow me to thrive.
Oreo walks past me towards her food bowl that sits on the kitchen floor. I am slightly disappointed in Roxy. One of these days she will accomplish her mission, and I will sleep beautifully until lunchtime. I open Netflix and put on an episode of Breaking Bad while checking my email and blog. Hundreds of new messages. At this point in my life, the summer of 2012, most of my days start by checking fan mail. Thousands of people from around the world write me to share how my blog had impacted their lives or made them laugh. I am twenty years old, and as my number of followers steadily climbs into the hundreds of thousands, I exist in a constant state of disbelief. The emails will have to wait, though, as will the rest of the work that was starting to pile up for my nonprofit. At that moment I just want to take a break from the insanity and enjoy my coffee while watching Walter White cook crystal meth.
An hour later my phone rings. It’s Mom calling from work as she does every summer morning to make sure Andrew and I haven’t set the house on fire.
“Is Andrew awake yet?” she asks.
“Yeah, he’s on the couch watching The Price Is Right,” I lie, not wanting to give her the idea that he’s being lazy or irresponsible.
“Whatcha up to?”
“Just watching Netflix.”
“What are you guys gonna do for lunch?”
“I don’t know. We’re fine.”
“I know you’re fine. I’m just checking. Can’t your mom be concerned?”
“Yup, we’re good.” We say goodbye.
Andrew comes out of his room shortly after. He collapses into the couch in our living room, and soon, I hear Drew Carey telling contestants to spin the wheel coming from the television. A few minutes later, Andrew yells, “Yo, do you care if Ryan comes over later?” I don’t. His friends and my friends inhabit our house most days of the summer, but he still always asks to make sure I don’t need his help with anything before inviting people over.
“I just need my teeth brushed, hair combed, face washed, and shoes on,” I told him.
“Yeah, I guarantee that’s not happening,” he said. Ten minutes later, he helps me do all four things.
Ryan arrives, and Andrew informs me they are going to McDonald’s and asks if I want anything. “A McDouble and a large sweet tea,” I say. Andrew says, “Okay. So a cheeseburger and a small sweet tea because you weigh thirty pounds, and I’m not wasting money on food you won’t eat.”
Twenty minutes later Andrew and Ryan come back with the goods. Andrew cuts my cheeseburger into four quarters and grabs me a plastic fork (metal forks are too heavy for me, but a fork is necessary since I can’t lift my hands as high as my mouth). We eat and play FIFA and go swimming. A summer day doesn’t get much better in my mind. It’s relaxing, simple, and nothing happens to remind me of the disease that’s slowly destroying every muscle in my body. Just a normal day in the Burcaw household. I say “normal” but what I really mean is “normal for us.” Ever since my diagnosis, the idea of normalcy has taken on a very different meaning for my family and me.
chapter 2
the lazy baby
My life waved goodbye to normalcy in 1992 at the Sayre Childhood Center in Bethlehem, Pennsylvania. I was nine months old, and while the rest of my classmates spent their days crawling around the room, pooping themselves and making a mess of everything they could get their hands on, I was perfectly content to sit wherever I had been placed, playing with whatever toy I had been given, or simply watching my other baby friends explore the world. I never moved. Crawling just didn’t interest me.
My observant daycare monitor mentioned my complacent nature to my parents and suggested that they take me to a pediatrician. It was probably “no big deal.” Sometimes babies experience delays in physical development, but it was probably best to play it safe and have a professional check me out. My pediatrician was more concerned. He felt that I needed to be seen by a neurological specialist.
I’m not sure how a sedentary baby winds up with such a grisly scar.
That ‘no big deal’ became slightly bigger.
After spending an hour watching and interacting with me, the neurologist declared that she was almost certain I had a neuromuscular disease called spinal muscular atrophy (SMA). She couldn’t be sure without performing a few significantly more invasive tests, but those needed to be done at a specialized hospital in Philadelphia, so the waiting continued. She warned my parents not to research the disease before I had an official diagnosis; the existing literature would only dishearten (read: scare the shit out of) them.
I need to take a little time to explain the boring facts about my disease. I apologize. If you’d like to make this paragraph more interesting, light your hair on fire and try to finish the paragraph before your scalp starts to melt. SMA is a neuromuscular disease that affects approximately .0001 percent of the population. (I can’t wait for the hate mail that begins: Hey Fucker, I looked up the prevalence of SMA, and I’ll have you know the true percentage is actually .00023 percent.” I’ve learned on my blog that people will get angry and argumentative over anything.) The human body has two proteins that help to create and maintain muscle tissue. An individual with SMA lacks one of those proteins, resulting in poor muscle development and progressive muscle deterioration over time. Basically my body just didn’t feel like developing these proteins while I was in the womb. I was the laziest fetus you’d ever meet.
There are three main types of SMA, aptly named Type I, II, and III. People born with Type I usually die before their second birthday due to severe wasting of lung and heart muscle tissue. On the other hand, Type III individuals usually walk for a few years before their symptoms become apparent. Their muscles waste away much more slowly than those of people with the other two types. Type II is really a toss-up. It is characterized as being an unpredictable combination of Types I and III. Important disclaimer: people outlive their prognoses all the time, sometimes by many years. I provide them to give you an idea of the very nature of the disease.
A few months after receiving the unofficial diagnosis from the local neurologist, my parents and I experienced a tiny glimpse of hell as I underwent the necessary tests to confirm the SMA d
iagnosis at Children’s Hospital of Philadelphia. I don’t remember it obviously, but I’ve heard the story from my parents a billion times. One of the tests involved inserting electrified needles into my thighs and shoulders, creating an electric current through baby me. Healthy muscles twitch and spasm when subjected to electricity. In my case, I reacted to the incredible pain with only tears; my muscles remained motionless. As if being electrocuted wasn’t enough trauma, the doctors also cut a chunk of muscle from my thigh later that afternoon for another test.
Shane Pickup Line: Hey, wanna see my scars? I’ve got one on my thigh, but you’ll have to help me take my pants off to see it.
The next day my parents were finally given the crushing news they’d been expecting to hear all along. Shane has Spinal Muscular Atrophy Type II.
“Will he ever walk?” asked my father.
To this day, he tells me that hearing the doctor’s response was the hardest moment in his entire life.
But therein lies a peculiar detail that defines my family. Finding out about the diagnosis was the most difficult part for them. Accepting it and figuring out how to deal with it came almost naturally.
My parents decided that this diagnosis was not going to cripple the happy life they had imagined for themselves and their son. Life is beautiful, with or without a severely debilitating muscle wasting disease. Before grief and sorrow even had a chance to sink their teeth in, my parents made a decision. My life would be normal. SMA was not the end, but the beginning. A bump in the road. An obstacle to rise above.
And so, the journey began.
chapter 3
learning to drive
As a baby I wasn’t much different than any other baby. Other than not being able to crawl, I was not limited in any other way. My mom tells me that it was almost nice never having to worry about where I was because I was always exactly where she put me.
