by Shane Burcaw
chapter 13
young love
My first serious crush occurred in fifth grade. This was the age when most of my friends began to pair off, or at least that’s what I understood from all the rumors that floated around the cafeteria during lunchtime. Did you hear that Joey touched Megan’s butt during gym class? Ryan went to Cassie’s house last night and her parents caught them making out! Did you see the used condom by the monkey bars? Brian claims it’s his!
Everyone starts to get a little horny in fifth-grade, and I was no exception. At this point, I still had no conception of dating and relationships. Many of my friends were girls. I often hung out with them outside of school. We played video games and walked (I rolled) to 7-11 for Slurpees. Innocent stuff. Then, around the same time all of the fifth grade boys were gathered into a room and told about erections by the gym teacher, a switch went off inside me. Suddenly the weird changes occurring in my body made sense. Morning wood was not just a random act of nature designed to make life embarrassing when my dad woke me up and helped me get dressed for the day; it was a sign that I was old enough to have a girlfriend (which, honestly, did not make the situation with my father any less embarrassing).
Upon making this realization, I simultaneously began feeling like I was a little late to the party. All of my friends either had a boyfriend or girlfriend or plenty of stories about things they had done when their parents were not around. Many of their tales were probably fabricated—looking back, I have trouble believing that any of my eleven-year-old friends had lost their virginity—but in the moment, I believed them and thus felt like I was being left behind. Girls didn’t want to come play video games and drink Slurpees anymore. After all, what would their boyfriends think? I needed a girlfriend, or I risked becoming a “loser.”
One of my closest female friends at the time, Lizz, became the target of Operation Fifth Grade Hormones. It was generally accepted among the boys that Lizz was the hottest girl in elementary school. Her boobs were winning the developmental race by a long shot, and she was athletic, a quality of high value at that age. She was sassy, but in a cute way that gave meaning to the multitudes of awkward erections experienced by the fifth grade male population. At recess one day, she kicked a friend of mine square in the balls for making fun of her. It was the best moment of his life.
Lizz and I connected in the classroom more than anywhere else. She was kind and funny always willing to help me, but in a way that just felt like we were close friends.
She came over to my house several times. She and my brother played tackle football in our front yard, then we ate some ice cream and did homework. Clearly, I had no reason to think she was into me. But that wasn’t going to stop me.
I knew from everything my friends had told me that I needed to “ask her out” if I wanted her to be my girlfriend. That scared me shitless. If you’ve ever read the poem “The Lovesong of J. Alfred Prufrock,” by T. S. Eliot, he perfectly describes the neurotic internal debate I felt while working up the nerve to ask Lizz out. If you haven’t read it, please mark your page here and go do so now. You can always come back to this, and if I’m being honest, Eliot’s poem is way better than this book. In fact, you should probably just throw this book away and go buy some of Eliot’s work. (Just kidding, don’t do that, please.)
Anyway, I’ve always been a very analytical person, to the point that it occasionally crippled me more than my disease could. If I asked Lizz to be my girlfriend, and she said yes, it would be the greatest accomplishment of my life. I would have a girlfriend. Kids in wheelchairs don’t get girlfriends very easily. This would be a big step in proving to the world that I was different. On the other hand, she could say no. Everyone knows that you can’t ever go back to being “just friends” after a failed proposal. Not to mention the overwhelming embarrassment of being denied and the implication that it meant I wasn’t good enough to have a girlfriend, which in my mind would obviously be because of my wheelchair. In a way, it felt like asking Lizz out would dictate my experience with females for the rest of my life.
I had two options. Risk failure by asking her out and maybe just maybe she would say yes, or simply not even try and avoid facing the probable reality that girls would never want to date me. After some serious mental deliberating, I decided to go for it.
I called out to her as she came down the slide the next day at recess, interrupting her game of tag. She walked over, sweating and panting, and asked what was up. Before I could answer, someone ran up behind her and slapped her on the back.
“TAG! LIZZ IS IT!” the little twerp screamed. Lizz rolled her eyes and ignored him, but I couldn’t help feeling like my proposal was already off to a terrible start.
“Hey Lizz, I know this might be weird, but would you want to go out with me? I really like you.” Boom. No beating around the bush, no small talk, just a giant question, presented with as much confidence as a fifth grade boy could have.
No hesitation on her part, “I like you a lot, too, but I just want to be friends!” she said, before smiling like an actual princess, then turning around and sprinting back to her game of tag.
My ego apparently refused to accept that answer, because instead of sulking away to cry behind the giant oak tree, I followed her.
“Lizz, wait!” I yelled, “seriously, I really like you!”
She paused her game again to give me the same answer as before. My mind didn’t understand. Boys I knew had no trouble getting girls to go out with them. In fact, many of my guy friends had been asked out by girls. There had to be a reason why she only wanted to be friends. Deep down I knew the reason, but again, my stupid fifth grade self didn’t feel like facing this reality, so I continued to follow her throughout the playground.
“Why?” I asked her when I was close enough for her to hear me. No response. I asked again, this time yelling to her as she swung across the monkey bars. Still no answer. For the rest of our twenty-minute recess period, I continued to follow her like a lunatic around the playground, accosting her whenever I got close enough.
Lizz and I never dated.
However, there was a brief period later in fifth grade when I hung out with the same girl at recess for a few days in a row. She shared her lollipop with me once and I thought things were getting pretty serious; I woke up the next morning with strep throat and that was pretty much the end of that. It wasn’t until two years later when this girl told me she had considered us to be “together” during those few days that I realized she was my first girlfriend. Romantic, I know.
Pickup Line: Hey do you want to make out with me? You do?! Great! I’m just going to need you to fill out this quick medical questionnaire. Have you experienced any coughing, wheezing, sore throat, watery eyes, headaches, stomach pains, runny nose, or fevers within the last week? I’m sorry, I just really can’t afford to get sick.
chapter 15
middle school madness
The end of fifth grade meant the end of elementary school and a transition into a much larger middle school. The middle school you attended was determined by the location of your house, which led to the reluctant severing of many friendships (except for the kids with parents who provided false addresses to send their bratty children to whichever middle school they wanted). Middle school means many different things depending where you live, but in Bethlehem and surrounding areas, it refers to grades six through eight, which meant I had to reassume my position at the bottom of the totem pole. The adults in my life teased me that middle school was a big, scary place from hell, but during my first week of sixth grade, I was alarmed to discover that they kind of weren’t teasing after all. Middle school was terrifying.
Please don’t attempt to shake my hand. I know it’s tempting; my severely atrophied arms are really sexy, but literally the only possible outcome of trying to shake my hand is an extremely awkward situation. I will chuckle and say something like, “I … uh … can’t really … uhh…” and you will realize that I can’t even extend my arm, let
alone shake back, forcing you to pretend that you had meant to pat me on the head all along, like I’m a cute, little wheelchair puppy.
You will probably assume that I didn’t notice your creative, on-the-fly problem solving. After all, people in wheelchairs have no social skills. But I did notice, and now all I can think about is how ridiculous it would be if you introduced yourself to everyone by patting their heads.
In the future, please consider utilizing fist bumps or tiny kisses on the cheek to greet me. I prefer a little tongue, but I won’t be picky.
Everything was so different than what I had grown accustomed to. In middle school, a bell rang at the end of class, causing an avalanche of students in the hallway as everyone raced to their next class before the late bell rang. 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 screaming, running, shoving, book bag throwing, cologne abusing, and making out against lockers. I cautiously made my way through this chaos for the first few days of classes, but eventually even I lost my humanity in this zoo. Being the nice guy just didn’t work here. Patiently waiting for people to get out of my way in the hallway became old very quickly, and I started navigating my chair through the crowd with less regard for the lives of others. Many shins were permanently damaged at the hand of my merciless driving.
Another difference in middle school was that every student was given a spiral-bound homework calendar at the beginning of the year. Whether you wrote down your assignments was completely up to you. Only a year ago, I had been required to get a parent’s signature on a weekly homework calendar every night. This new freedom, mixed with my lazy but confident personality, led me to use my homework calendar a grand total of zero times, convincing myself that I could keep all of my assignments organized in my brain. Turns out I couldn’t, which I was forced to accept when I got an unbelievably crushing B on my first report card; social studies though, so in hindsight, who cares? I didn’t do the logical thing and change my ways to become a more organized and responsible person, but rather settled into a lifelong routine of half-assing school because I didn’t feel like putting in the effort to stay organized.
Middle school also presented the obstacle of making new friends, which scared me. Several of my closest friends from elementary school attended the same middle school, alleviating some of my stress, but I knew I wasn’t going to get through life with the same group of three or four people. Branching out felt like a step that everyone had to make at some point, but for me, meeting new people meant having more people who I could rely on to help me. Therefore, making friends was vitally important to my ability to function in society. Anything that is vitally important to survival will inevitably be stressful.
When you look like I do—a starving Ethiopian child with a balloon head who basically drives a robot—making new friends can feel daunting.
Here’s the scenario that I feared most: I’d enter new classes and be seated next to kids I didn’t know. They would feel awkward about sitting next to the kid in the wheelchair and would subsequently not want to become friends. Sure, I had no doubt that they would be decent enough to help me with things that I asked for, but that’s where our interaction would end. I would spend every day going to school being lonely and not talking to anyone. I would turn into a “loser” who had no friends. People would permanently view me as different and unapproachable because of my disease.
Maybe in a way, my fear of not making friends is a universal one. However, in my mind, my wheelchair and disease would be the unfair cause of never making friends.
To combat this imagined scenario from ever becoming a reality, I spent a considerable amount of time obsessing about the way kids would perceive me when middle school started. I bought cool clothing, thinking that if I wore the same clothes as them, they’d have an easier time seeing me as their equal. I continued to let my hair grow, since being rebellious and having long hair would obviously be a sign to people that I was normal. I ran through potential conversations in my mind and practiced asking for help in cool ways that didn’t sound pathetic and annoying.
Things NOT to do when meeting someone in a wheelchair for the first time:
1. Spit on them
2. Tell them how great it is for them to be out in public
3. Hit them
4. Rustle their hair affectionately
5. Kick them
6. Throw them out of their wheelchairs
7. Push them down a flight of stairs
8. Call them “Buddy”
9. Steal their money
10. Challenge them to a foot race
Then middle school started. Sure enough, in my first class of the first day I was assigned a seat next to someone I didn’t know, a pretty girl who was definitely one of the popular girls at her elementary school. Upon realizing she had been assigned a seat next to wheelchair kid, the facial expression that she tried to secretly flash to her friends told me I had already been labeled as weird. My palms doubled their output of sweat. We sat next to each other in silence, as I discovered I was not nearly as brave and socially skilled as I had convinced myself to be in the weeks leading up to this moment. Say something you idiot.
“Hi, I’m Shane,” I said, my voice probably noticeably shaking.
“Hey, Shane, I’m Samantha. Do you like East Hills?”
That was an odd question for a pretty girl to ask. And she asked it with a clear condescending tone in her voice, like she was speaking to a toddler. She already thought I was mentally challenged.
“Yeah, it’s pretty cool, but the hallways are so fucking crowded! I accidentally ran over like four people on the way to class.” Cursing was an excellent way to show social normalcy. She noticed. Her giggle was nervous but genuine, like she wasn’t sure if I was being funny on purpose. I continued, “Hey, could you possibly be my helper for this class? I just need help with small stuff like getting my books out of my book bag. I would do it myself, but I’d probably end up on the floor.” She laughed, a little harder this time. There’s nothing like meeting someone who quickly understands my sense of humor. I watched her facial expressions and heard her voice completely shift over the next few minutes as she began to realize I was a normal kid. My sense of humor allowed her to see past my wheelchair. Getting people to see past my wheelchair was my one of my biggest concerns when I was young. This desire came from not only my interactions at school, but also a particular event during a summer camp for disabled kids that made me question how nondisabled people perceived me.
chapter 16
cripple camp
Right before middle school, I attended a weeklong summer camp for kids with muscular dystrophy run by the Muscular Dystrophy Association, which has helped my family tremendously throughout my life. (There are over forty types of muscular dystrophy, diseases that involve muscle deterioration in one way or another. My disease, SMA, falls under that umbrella.) Camp is one of the MDA’s biggest programs, taking place all across the country every year, allowing thousands of kids with MD to spend a week away from their parents doing things like swimming, boating, fishing, and tons of other stuff that disabled kids might not get to do too often. When my parents asked if I’d like to go, I was enticed by being away from them for a whole week. Sure, I’d be assigned a full-time counselor whose job was to keep me alive for the week, but living without them still felt like a step towards independence. However, at that age, nothing made me more uncomfortable than being surrounded by other people in wheelchairs. I desperately wanted to show the world that I was normal despite my disability. Looking back, I think this frame of mind was further solidified by my week at
summer camp.
There was another kid at this camp who had the same exact disease as me; we shall call him Tim. I’m going to try my best to be as honest and fair as I can when I describe Tim, but you have to understand, during this week of camp, Tim was my archfuckingnemesis. I hated Tim. Today, I realize I probably didn’t give him enough of a chance, and my opinion of him was shaped by my 13-year-old mind, so there is a good chance that Tim is actually a very cool dude (doubt it). However, this was certainly not the case back then. We’ll get to Tim in a little bit.
When I arrived on the first day of camp, the first thing I noticed was that all of the other kids were, or acted, younger than me, which instantly gave me second thoughts about letting my parents leave me here for a whole week. I could smell immaturity in the air. While my parents got me signed in with the camp officials, a bunch of wheelchaired-kids chased each other around, wielding balloon swords. It was obvious that a few of them were young enough that balloon-sword fighting was an acceptable and normal thing to be doing. However, a couple of them were at least as old as me, if not older, and it bewildered me how they were getting such a huge kick out of PRETENDING to stab other kids with their balloon swords. I remember wanting to scream at them, “It’s a balloon! It won’t hurt if you stab each other! What are you guys even doing?” I immediately disliked every kid at the camp.
Another observation I made in the first few minutes of arriving to camp was that almost none of these kids had shoes on. Some had only socks; most just let their bare feet flop around in the breeze. All of them had severely atrophied ankles like me, but I wore splints that held my feet straight during the day and over my splints I wore normal shoes. I wore shoes because I often went out in public, where wearing shoes is the socially acceptable behavior. Additionally, I was well aware that my atrophied feet look weird to other people. Gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging me as a normal human being. I started to feel extremely uneasy as it dawned on me that none of these kids understood this concept. My young mind started racing. This meant that these kids probably didn’t have too many friends, which meant they probably didn’t understand how to have normal human interactions, which was why they were all acting so immature! It all clicked in my mind. Look, I feel completely fucked up for thinking this way and for judging all of them so quickly, but if I’m going to be 100 percent honest with all of you, I have to admit that my judgments were actually pretty accurate, which blew.