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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.
| ISBN-13: | 9781626720084 |
|---|---|
| Publisher: | Roaring Brook Press |
| Publication date: | 10/14/2014 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 256 |
| Sales rank: | 301,721 |
| Lexile: | 1110L (what's this?) |
| File size: | 3 MB |
| Age Range: | 14 - 17 Years |
Shane Burcaw is a twenty-one-year-old with spinal muscular atrophy. He is currently a junior at Moravian College in Bethlehem, Pennsylvania, studying English. Shane runs a nonprofit organization dedicated to raising money for muscular dystrophy research.
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 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 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, and 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.
"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 gingerly, 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.
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 afterward — 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 superlong bendy straw that I ordered 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 toward 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 has 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 is 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 onto 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 tell him.
"Yeah, I guarantee that's not happening," he says. 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 2the 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 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.
During the neurologist appointment, 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 diagnosis 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.
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.
I should mention that everything I know about the process of my diagnosis and early childhood is completely based on the stories my parents have told me. Like everyone else, I have little memory of the first few years of my life. There's a chance that they are lying to me and I do not have SMA. Maybe one of them accidentally dropped me down a flight of stairs as an infant and they decided it would be easier to create this elaborate story than own up to their failures as parents. My entire life could be a hoax. The Illuminati are possibly, if not definitely, involved. (Do you think my book will sell more copies now that I can include Illuminati as a keyword for the Amazon listing?) I will never know.
CHAPTER 3learning 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.
I started talking in complete sentences at a very young age, a common trait in SMA Type II–affected individuals. It makes sense. I probably became aware that communication was vital to getting what I needed. If I couldn't reach a toy a few inches away from me, all I needed to do was ask someone and they were more than happy to help. This reliance on others began when I was a baby, and has followed me since.
The real fun began in preschool at the age of three, when I got my first wheelchair. I attended a preschool that specialized in helping the physically and mentally disabled; the only "special" school I've ever attended. It ultimately served me well. There was a physical therapy center within the building, and that is where I learned how to drive.
At first the therapists put me in a small vehicle that looked nothing like a wheelchair. It was basically a box on four wheels. In front of me sat four large arrow buttons, pointing forward, backward, left, and right. I curiously pressed the forward arrow and almost fell over at the unexpected lurch. My eyes lit up as my young mind began to comprehend the independence I suddenly had. Up until this point in my life, movement of any type meant being carried by my parents, or being strapped into the jogging stroller that they used to take me places. I had been conditioned to appreciate my surroundings from wherever I was seated, but now, if I wanted to move left and further inspect the fascinating bug on the wall, all I needed to do was press the left button until I was closer.
This training chair didn't last long. Therapists use it to teach children the basic concept of using a wheelchair to navigate through the world. A few days later, they brought a real wheelchair for me to try. After strapping me securely in place, the therapists explained that instead of directional buttons, I would now use the joystick that sat in front of me to control my movement. This would allow me to have 360 degrees of control of my chair's direction. And, the therapists said, this wheelchair was a lot faster, so I needed to be careful.
Less than twenty seconds later, I had smashed full speed into the padded wall on the opposite side of the therapy room. The therapists gasped. I cracked up laughing.
I was reprimanded for putting myself and other people in danger. How was hitting a padded wall dangerous? I asked. This question earned me a stern speech on maturity and responsibility, two values I had to learn at a young age. Clearly though, they didn't understand that I was in complete control the entire time. I wanted to hit the wall. In fact, crashing into the padded walls of my preschool became one of my favorite activities. I've always been a bit of a thrill-seeker.
Luckily my parents had a good medical insurance policy that covered the cost of a motorized wheelchair, and the therapists at my preschool were able to convince the insurance company that I needed one for independence at such a young age. I had my own wheelchair a few months later. From that day on, I spent almost every waking hour in the seat of that ridiculously expensive ($28,000) little vehicle.
My family — which now included a little brother named Andrew — and I lived on a quiet street in Bethlehem for the first eight years of my life. Maple Street was lined with towering maple trees that created a tunnel of shade during the summer. Along either side of the road were several town houses. Our home was brick and had a cozy, covered front porch with a baby swing that my dad would push me in to break up the constant wheelchair routine. We didn't have much of a front yard, and the moderately sized backyard was mostly taken up by the winding wooden wheelchair ramp that my dad built so I didn't have to sleep outside. For my brother, our friends, and I, the front sidewalk and back alley became the primary places to play. My enjoyment of wall-smashing quickly turned to sports once my brother was old enough to play them, which was about two days after he began walking.
CHAPTER 4whoops!
On a humid July day when I was six, instead of racing around outside with my neighbors, I was sitting on the toilet, strapped into my specially adapted backrest, quietly weeping at myself for being so stupid. What was wrong with me? On my bare lap sat our house phone, waiting for me to gather the nerve to call my neighbor, Ben.
Excerpted from Laughing at My Nightmare by Shane Burcaw. Copyright © 2014 Shane Burcaw. Excerpted by permission of Roaring Brook Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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