by Shane Burcaw
On the day I was allowed to leave the hospital, I went outside and drove to where my van was parked. When the ramp was unfolded I began to realize something was not right. I drove up the ramp and stopped just before entering the van; my head was too high for me to get in without hitting it on the ceiling. By straightening my spine, the doctors had stretched out my body a solid five inches. I had to ride the entire hour home with my head tipped to the side, which felt just spectacular on my still very sore back.
Elementary school proceeded normally after my spinal fusion. I was assigned a full-time aide starting in second grade. She was a motherly figure who sat next to me in class and provided physical assistance whenever I needed it. After two years of maturation, I began to realize the negative impact she was having on my social life. My peers didn’t want to hang out with Shane and his aide; adults were dumb and they yelled at us for cursing.
Today, the metal rod is completely surrounded by my spine, and I only have moderate scoliosis, which is why I look like I’m leaning over in my pictures. (It was impossible to make it completely straight because of how bad it was before.) I have only had pneumonia a handful of times since the surgery, and I am still alive and kicking, so I will mark it as a win for me. Also, I have a super-cool scar that runs the entire length of my back.
Around fourth grade I made my first best friend at school. His name was Eddie, and he quickly made a distinction that many other kids were unable to make; I was separate from my wheelchair and all of its implications. Eddie valued my sense of humor and appreciated that I had to do things a little differently, probably because Eddie was a little different himself.
Eddie was a skateboarder. At a time when other kids were joining baseball and football teams, Eddie spent his time honing his skills on his custom-made Element skateboard. I became obsessively hooked. Skateboarding promoted an alternative, anti-establishment lifestyle. Skaters wore different clothing, thought differently, and most of all, didn’t care if the rest of the world thought they were odd. That’s exactly what they wanted.
First, I got rid of my aide. The skater mindset taught me that I didn’t need the help of adults; I was supposed to resent it. Eddie sat next to me in every class, so I convinced my parents that he could help me just as well as the aide. Although my motives for favoring the assistance of a close friend were not exactly angelic, it was the beginning of an important and healthy trend in my life; making friendships based on the mutual understanding that I needed physical help and would rely on them for it from time to time.
I also grew my hair out, a staple of the skater lifestyle, and begged my parents to buy my clothes from only the local skate shop. The fact that I couldn’t walk never felt like a reason why I couldn’t be a skateboarder. When questioned about my style, usually by adults, I simply responded, “If I could walk, I would skateboard. Besides that, I’m a skateboarder in every other way.”
I held onto the skater identity for an embarrassingly long time, well past seventh grade.
The worst part is that I made Mom spend at least fifteen minutes making it look “perfect” every morning.
chapter 10
a halloween debacle
When I was ten years old, probably in second or third grade, for whatever odd reason, my elementary school was asked to walk in the Bethlehem Halloween parade. I don’t really understand why we participated, because it’s not like we had a marching band or anything that made us special. Our teacher just told us that we should all dress up as what we wanted to be when we grow up and arrive at the beginning of the parade with our parents on Saturday morning.
Bethlehem is home to approximately 70,000 people, so it’s a pretty sizable town. Our yearly Halloween parade is far from a big deal for most people, but I would estimate that a few thousand people line the sidewalks of Main Street to watch it each year. My family had taken my brother and me to watch the parade in years past, with the highlight always being the candy that people in the parade threw to the onlookers. I was excited to be the one with the power to throw candy to whomever I wanted this year.
But first, I had to figure out what I wanted to be when I grew up and how to incorporate this idea into a costume that involved my chair. Costumes that incorporate a wheelchair are a lot more difficult to make than you might think. People always suggest that I should be a car or a tank, and just plop a big, painted box over my head and wheelchair, but I’ve tried this, and the box inevitably slips out of position and falls on top of my joystick, causing my wheelchair to spaz the hell out and crash into groups of young children at top speed. Therefore, most years I have opted to dress up as something that only loosely involves my chair. Here are some examples for you to laugh at:
The year of the Halloween parade however, I ended up deciding that I wanted to be a lawn mower (a person who mows lawns, not the physical object) when I grew up. I know, practical. I was only ten, and at the time my dad owned a pretty big lawn business. Since I looked up to him, lawn mower it was. I wish I had a picture of this costume, but I basically dressed in jeans, boots, and a shirt that read, “Burcaw Custom Lawn Service.” We attached a wagon to the back of my wheelchair with duct tape and filled it with a bunch of fake lawn mowing equipment. I looked pretty boss.
Naturally, it was pouring rain the morning of the Halloween parade. Bethlehem’s city officials chose to not cancel the parade, and my elementary school made the responsible decision and called everyone to say that we were still expected to be at the parade. Awesome.
It’s important to understand that $28,000 electric wheelchairs do not mix well with rain. They are designed to be able to handle a small amount of water, but any prolonged exposure to heavy rain can result in serious damage. Last summer, I got caught outside in a flash rainstorm and my chair didn’t work for three days, and as you can probably imagine, being without my wheelchair makes me want to put my head through a wall.
We decided to tough it out and face the rain with everyone else. My dad drove me to the parade; he would be walking next to me along the way because I wasn’t old enough to rely on my friends to help me out with stuff yet. Our elementary school was designated the very last position in the parade. There’s nothing like a bunch of little kids in shitty costumes to send a parade out with a bang! This meant that we all had to stand out in the pouring rain at the beginning of the parade while the rest of the parade got started down Main Street.
My father insisted that we cover my chair in a rain poncho while we waited for our turn to join the parade, which in hindsight was definitely a good idea because my chair would have undoubtedly short-circuited and exploded during the hour that we had to stand there and wait.
Luckily, the rain had slowed to a steady mist when it was finally our turn to join the parade. My dad took the poncho off and secured the wagon to the back of my wheelchair. Our class merged onto Main Street and started the slow half-mile walk to the end. The couple hundred people who decided to brave the rain to watch the parade acted like my costume was the cutest, most awesome thing they had ever seen in their life. There was a bucket of candy in the wagon behind me, and I instructed my dad to throw handfuls to people, as opposed to single pieces, because when I had watched the parade in past years, I hated all the douchers that only threw out single Tootsie Rolls.
A few blocks down the road, everything was going well, and then out of nowhere, the back right wheel of my wheelchair decided that it had served its duties long enough and broke off from the axle of my chair. All of a sudden, I saw my right wheel rolling down the road in front of me. My chair sharply and immediately veered to the right, and I almost hit my dad, who didn’t even notice my wheel had fallen off. He thought I was just driving towards the curb to be funny, so he started to yell at me, but then he must have noticed the empty axle because he ran over and helped me turn my chair off.
The giant street sweeper that cleaned up after the end of the parade was only about 30 feet behind us when this incident took place, so when it passed us, it gobbled up all th
e tiny pieces that held my wheel in place.
My dad was barely able to guide my chair to the edge of the curb. A few people who were watching the parade and saw the events unfold came over to see if they could help in any way possible. Immediately, my dad became focused on figuring out a way to put my wheel back on—even if was only temporary—because the rain was picking up and I needed to get back to the van where we had left the poncho.
As a joke, my dad asked if anyone had any rope. I will never forget the look on this random dude’s face as he reached into his pocket, pulled out a long, thin, rolled up piece of rope and said, “I do!” (Because carrying rope around in one’s pocket is such a normal thing to do.) Anyway, my dad miraculously fashioned some type of knot that held my wheel onto the axle long enough for me to make it back to the van.
All in all it could have been a lot worse; the street sweeper could have eaten me alive, or I could have been walking in the parade on my own, or I could have crashed into an old woman and killed her, so I guess I can’t complain about how terrible that Halloween parade really was.
chapter 11
slam dunk
When I was in third grade, my family moved to a new house in a neighborhood not too far from the one I spent the beginning of my life in. That summer, Andrew and I met our new next-door neighbor, Pat, who was a year younger than me and would eventually grow up to be one of my closest friends.
Neither of our families had a pool, and we were tired of spraying ourselves in the face with the hose, so we settled for shooting hoops in Pat’s backyard.
His house had a wrap-around driveway, which created a large paved area in the back that was great for all types of sports. Pat’s family had recently installed a super-legit, glass-backboard basketball hoop that made us feel like we were training to someday play in the NBA. I can’t shoot a basketball, so I would usually just play defense and try to demolish my brother’s shins whenever he tried to shoot. I also set picks (blocked) like a monster. I once almost killed a kid at recess when he blindly ran full speed into one of my immovable wheelchair picks, but I digress (I love saying that).
Pat’s usual attire
Anyway, after a while one of us threw out the idea that it would be awesome if we could dunk. Of course that would be awesome; dunking was the coolest thing ever back in those days. Too bad that super-legit basket was also super-too-high for us children to reach. We even tried using a mini-workout trampoline to dunk, but we were just too young and short. By we, I mean them, I was just too much in a wheelchair to dunk.
I am admittedly a very stubborn individual at times; when I get an idea in my head, I can be extremely annoying/pushy/relentless until I accomplish whatever I am trying to get done. This was one of those times. I knew there had to be a way to help my friends dunk. Before telling them my idea, I told Pat to go grab the long rope his parents kept upstairs in case they ever had to climb out a window during a fire. Don’t ask. Whether it’s a good or a bad trait, I am also pretty good at manipulating people; not in an evil way, just in the kind of way that I knew once Pat went through the work of acquiring the rope, he would be less likely not to allow me to at least try my idea.
Once he had the rope, I explained that our parents might not like what we were going to do, but none of them were home and it wouldn’t take long, so everything would be fine. My idea was to tie a noose on one end of the rope for my brother to lie in, loop the rope up over the basketball hoop, and attach the other end to my wheelchair. I would drive in reverse, which would pull my brother up to the height of the rim so he could chill there while we threw him alley-oops. It was perfect and nothing could go wrong.
Andrew and Pat surprisingly agreed, and we started setting up the system. My brother, being the youngest and most daring of the three of us, just assumed that he would be the one being pulled up to dunk. On our first attempt, as I slammed my chair into reverse, my brother shrieked in pain and I quickly let him down before he was a foot off the ground. The rough rope on his bare skin (he had his shirt off because it was hot), in addition to his entire body weight being supported by a rope going across his stomach, apparently hurt pretty bad. I told Pat to go grab a couch pillow.
Oh, did I mention I’m also an artist?
The next try, with the couch pillow between the rope and my brother’s body, worked much better, and to all of our amazement, he started lifting off the ground towards the basket. Then we had a problem. My wheelchair ran out of strength to keep lifting him, and despite being in full reverse, neither of us were moving. Pat ran over, grabbed the rope, and pulled with me; slowly my brother inched higher. As he neared the top of the basket, he became significantly heavier, which is probably some kind of physics problem, but I don’t understand it. My tires started spinning and we lost a little ground. For a good five minutes we battled gravity in this manner, while my brother bobbed up and down like something that bobs up and down.
All of a sudden I heard someone scream, “WHAT ARE YOU GUYS DOING?” It was my dad, and to my relief he was laughing. He walked over, saw us struggling to keep my brother in the air, and said that probably wasn’t very good for my chair. Defeated, we lowered my brother back down and begrudgingly untied both ends of the rope.
Then I had an even bigger problem. I noticed my wheelchair now only turned left; I couldn’t drive in a straight line or turn right at all. My dad noticed, too, and came over to see if the rope had knocked something out of whack.
It turned out that our little stunt had completely destroyed both my rear gear motors, which had to be replaced at the price of $4,000 each. Whoops.
You have to have fun somehow, and we certainly did.
chapter 12
daydreaming
When I was young, I went through an odd phase where I constantly had these intensely detailed daydreams about having a paintball fight inside my elementary school. I’ve never held a paintball gun. In fact, I don’t think I’ve ever even been with someone who’s had a paintball gun. Water guns were as far as my parents ever let us get in that realm of entertainment.
The most experience I’ve had with guns was that Pat’s older brother had a BB gun that was occasionally brought out while I was at their house. His brother was in high school and fully aware of the incredible control he had over us with that gun in his hands. He only ever shot Pat, but the howls of pain that escaped his mouth when he did made me flinch whenever the gun’s barrel swung in my direction. We simply had to bow down and concede whatever his brother wanted once the gun came out.
Brother: I’m playing video games now.
Pat: NO. We’re playing. Mom said we could.
Brother: [gets gun] I’m playing video games now.
Pat: You’re playing video games now. We love you.
My experience with paintball guns was even further limited. I once found an unpopped paintball (didn’t know that’s what it was at the time) near my house and thought it was cool, a little secret squishy treasure. I asked my brother to hand me the unknown object and began massaging it between my fingers because the soft sack of mystery felt amazing.
It popped, scaring the shit out of me, and covering my lap and wheelchair in red paint. My mom was thrilled.
Anyway, my daydreams about massive paintball fights seem kind of weird now, given my aversion to guns as a child.
The daydreams usually took place when I was trying to fall asleep. Does that still count as a daydream? I don’t care. They began with team selections. In my head I’d see a never-ending row of everyone I knew, or at least the people I liked. There were always two teams: my team and the other team that consisted of everyone I didn’t pick for my team. I’d go down the line of potential assassins and weigh the pros and cons of having him or her on my team. Pat’s older brother was always a given. He was fast and tall and a great shot, at least in the close quarters environment of Pat’s living room, where I’d seen him perform. My dad, hmmm, probably not. His strength and protective nature were definite selling points, but I didn’t
think he’d be able to swiftly and silently navigate the halls of my school where the battle royal was taking place. There was no way in hell he’d be able to perform a diving-across-the-hallway-while-firing-his-gun maneuver without getting hurt, even in my land of make believe.
Teams were picked and the fight would begin with my team and me huddled at one end of the school. I was in charge and whispered directions to them about who would be traveling together and what our methods of attack would be. “Stay inside the alcoves in the walls. Diving is the best way to avoid being hit.” I was obsessed with diving.
Oh, I guess it’s important to mention that I wasn’t in a wheelchair in these daydreams. Wheelchairs aren’t exactly stealthy, and back then I was able-bodied in all of my dreams.
The most vivid part of my fantasies started when I set off down the dark hallway toward the other team. After handing out orders to my teammates, I always took off on my own. (There’s probably a deep-seated, psychological reason for this fact.) Where the dream had previously been from third-person point of view, it now switched to first person. I became myself traveling through the building, constantly checking my paintball cartridge to make sure I had enough ammo, scanning the hallway for enemies, ducking into alcoves, diving all over the place for no reason. When I did come across a member of the other team, we inevitably entered into a dramatic standoff, both of us pressed into the safety of an alcove, peeking out every so often, firing off erratic paintballs towards the other, more diving across the hall for no reason. I always won. My team of fighters never reentered the daydream. Instead, I’d clear out the building by myself, and either fall asleep celebrating my victory or snap out of my dream to imagine the awesomeness of being able to someday dive through the hallways of my school playing paintball with my friends if my disease was ever cured. Since I wasn’t confined by my wheelchair in the dream, the possibilities for entertainment were endless.