by Shane Burcaw
I handled this situation in probably the worst way possible, by not telling anyone about my dilemma and trying to convince myself that I could do it. As the semester progressed, I worked super-hard on my project. My paper was on satire and so I read The Hitchhiker’s Guide to the Galaxy. My paper turned out really well and the slideshow I prepared for the presentation was actually funny and interesting.
Before my jaw muscles started getting really weak, I never got nervous talking in front of people, but this presentation went a long way in changing that.
On one of the final classes of the semester, the day I was scheduled to give my presentation, I sat in class in extreme nervousness while a few other students presented before me. “Why didn’t you just tell the teacher you couldn’t do the speech?” was all I could think. My hands were sweating buckets as I realized I didn’t know what I would do if my mouth started to fail me.
Finally it was my turn, so Becca and I made our way to the front of the class. I had asked her to help me click through my slideshow. The first three minutes of the presentation went pretty well, then, just as I had known the entire semester, my jaw started to freeze up. It got really bad really fast, and I could tell from my classmates’ faces that nobody could understand me anymore. Then I made the situation even worse. I stopped speaking, turned to the teacher and mumbled, “My, uhhhh, mouth muscles are really tired … Umm, can I finish the rest of this tomorrow?” Sensing the awkwardness filling the room, my teacher replied, “Umm, yeah … okay, class, we’re going to move on, and Shane will finish his presentation tomorrow.” Every single kid in the class had the “oh God, this is awkward, look away” expression on their face.
I went back to my seat, face reddening, and quickly apologized to Becca for putting her through that. She couldn’t stop laughing, and suddenly, neither could I. Sure, I was embarrassed to the point where my face felt like it was melting, but at the same time, I didn’t care! Everything that had just unfolded was so completely awkward that it was hilarious. It would have been very easy for me to let that day break me down, but what good would have come from that?
I ended up getting an A on that presentation. That is what I call a pity grade.
chapter 25
getting crunk
Considering the fact that I weigh as much as the average seven-year-old, getting drunk never really seemed like a realistic possibility for me throughout high school. Actually, getting drunk wasn’t the problem—it would probably only take a few sips to get completely wasted—but I was nervous about how my body would react to alcohol. Add to that the fact that my parents were the ones to put me in bed every night, and the situation becomes not just dangerous, but also extremely likely to land me in a pile of trouble. During winter break of my senior year, I finally convinced myself to take a risk and try it.
It was New Year’s Eve. Becca and I were trying to spend as much time together as possible since we knew we wouldn’t see each other very often once she went off to college at the University of Pittsburgh. We decided that we were going to spend New Year’s Eve together, and attempt to get me wasted for the first time in my life. Normally, Becca would go out and party with her other friends on New Year’s, and I would spend the night shoveling ungodly amounts of pork-fried rice into my tiny stomach with my family.
My disease makes drinking, or participating in any frowned upon activity, a complicated matter. I rely on other people to take care of me, mainly my parents. So if I were going to stay out and drink, I would eventually have to call one of them to come get me, not to mention one of them would have to help me go to the bathroom and get into bed. Basically, it would be impossible to hide my drunkenness from them. Some of you might be thinking, so what, my parents know I drink and they don’t care. My parents are not your parents, and they had a justified reason to not want me drinking; it was really unsafe.
I, however, had reached a point in my life on that New Year’s Eve where I did not really care how dangerous drinking might be for someone of my condition. It seemed silly for me to go through life constantly making cautious decisions to avoid getting in trouble or hurting my body. You only have one life to live, might as well make the most of it.
But please don’t get the impression that I was approaching this night by throwing all caution to the wind. I firmly believed that if I acted smart and responsible about drinking, everything would be absolutely fine. There was a small voice in the back of my head saying, “Remember, you are far from indestructible, and it would be just plain stupid to throw away a great life for one night of fun.” I had no idea how much alcohol my liver could handle, and I wasn’t about to test its limits.
We decided it would probably be easiest to enact Operation Get Shane Drunk at Becca’s house, and that I would just sleep there to avoid confronting my parents while I was slizzard. The only bad part about this plan was that sleeping over at other people’s houses was kind of not very comfortable for me. Unless my brother was with me, I usually slept in my chair so that I didn’t need to call anyone during the night to roll me from side to side. My chair is comfortable to sit in, as for sleeping … not so much. It did have a recline feature, but sleeping in it is far from desired. Also, I couldn’t really go to the bathroom at other people’s houses, again unless my brother is there who knows how to do all that fun stuff. I just wasn’t comfortable with people outside my immediate family helping me with my overnight routine. If only I had considered all this before we decided to spend the night at her house.
Becca and I stopped by our grandfather’s house before we went to her house, because some of our extended family was in the area and they were having a New Year’s party. Around 10 p.m., we said goodbye and told everyone that Becca was having a couple people over to her house, which wasn’t a complete lie; one of our other friends did join us for the festivities. As we left the party, my dad and our uncles came outside with us and reminded us to be smart about whatever we chose to do that night. I was surprised by the apparent fact that my dad was cool with me getting drunk as long as I wasn’t stupid.
An adult who shall remain anonymous bought us a box of Franzia, which might be the classiest adult beverage of all time. We weren’t trying to impress anyone.
When we got to Becca’s house, the movie 300 was on TV, so we played a game where every time we felt intimidated by a character in the movie, we took a drink. Becca had to help me tip the cup to my mouth because the awkwardly shaped wine glass did not work well in my awkwardly shaped hands. After I finished my first full glass, I didn’t feel any effects of the alcohol, and we started discussing the possibility that my SMA made me some kind of super-human alcohol tank. Then I had another glass.
All of a sudden I was drunk. It was awesome. I felt so light and my muscles didn’t feel as tight as they usually do. Our friend Brian showed up. He and Becca continued downing glasses of the delicious Franzia, while I practiced driving in straight lines around the room, which was impossible. We laughed a lot, mostly at me, and all in all it was a great time.
I’ve been told I can be arrested for DUI if I drive my wheelchair while drunk. Something about this seems unfair.
However, we didn’t quite plan the whole night out as much as we should have. Around 3 a.m., Becca and the other kid we invited were absolutely smashed. They both wandered off to different parts of the house and passed out. I realized I was now alone downstairs, not drunk enough to pass out, and with only my phone to keep me occupied. I tried to sleep, but like I said, my chair is not very comfortable. Also, when I do sleep in my chair, I am usually very close to other people that I can wake up if my head gets stuck or I become way to uncomfortable. Becca was two staircases above me and our other friend was nowhere to be found. (I later found out he had passed out in the guest bedroom, which was right next to the room I was in, so I could have gotten him if I needed to.) Anyway, at the time, I felt totally alone and didn’t want to fall asleep for fear I’d wake up in pain and be unable to get someone’s help.
I l
iterally sat there and played games on my phone until it died. That was around 4:30 a.m. After that, I just sat there and tried to relax until somebody woke up. Not fun.
To my surprise and delight, Becca and her mom both got up around 7 a.m. Becca came downstairs to get a drink because she was feeling really sick. I explained that I had yet to fall asleep and even though I acted like it was all good, her mom heard me talking and suggested they run me home so I could sleep. I say “they” because Becca had to drive my accessible van, and her mom had to follow us to bring Becca back home. Needless to say we were all grumpy, and in retrospect Becca probably wasn’t in the best condition to be driving me home. On the way home Becca and I started joking about the previous night. I found a video on my phone that I had forgotten about; it was just of me, sitting in my chair, with my head bobbing in all directions and a huge smile on my face. We laughed really hard.
I got home and woke up my dad, who was surprised by how early I was home. He didn’t ask questions, but I told him about my night and he laughed a little. I went to bed. My memory foam never felt so good.
Overall, that New Year’s Eve was fun, but could have been a lot better if we had planned ahead.
chapter 26
college
I goofed off more than I should have in high school. None of the work we were given, even in honors classes, was particularly difficult. Most assignments were tedious and extensive at worst, but we all found shortcuts and loopholes and ways to split up the work to make our lives easier. Becca and I probably should have received a single high school diploma when we graduated, because there weren’t many assignments that we did separately. Since we sat next to each other in most of our classes, and spent most of our time outside of school together, we cheated. A lot. We both felt that if we understood the material we were working on, there was no harm in splitting an assignment fifty-fifty to maximize productivity. Some of our teachers even knew about it, and would joke that we should receive the same grade on all of our assignments. Sometimes our cheating methods got a little ridiculous, as in, Becca would do all the math homework and I would do all the science and then we would swap. Cheating on tests was a little more difficult. Luckily, we were able to sit relatively close to each other during exams, since she had to help me flip the pages of the test (which I could do completely on my own).
I got mostly As with little effort, and an occasional B when I didn’t even feel like putting in that minimal effort. Then I woke up one morning of my senior year and realized I had no idea what I wanted to do with my life, or where I was going to go to college, or if college would even work for me, or what I wanted study. The real world scared me, and I didn’t feel prepared in the least bit.
After some extensive conversations with my parents, we decided a local college would be my best option, so I could live at home and commute. I’ve never been taken care of for more than a few days by anyone other than my parents, and moving away would mean arranging full-time caretakers, which is expensive, stressful, and annoying. It felt a little unfair knowing that many of my friends would be leaving their parents and going off to explore a new place in the world on their own, while I’d pretty much be doing things the way I had been my whole life, but with new friends and new classes. I wanted to be free. Had I been dead-set on making that leap and leaving home, we probably could have figured it out, but fear of the unknown was also a pretty big factor for me. I was afraid of getting stuck with some old grumpy nurse named Gretchen who would make me go to bed at 9 p.m. and who wouldn’t know the right way to wipe my butt after I pooped.
My college selection process was short lived and bittersweet. As it turned out, I visited, applied to, and chose to attend a grand total of one school—Moravian College in Bethlehem, PA, about four minutes from my house. Our family had a deep history at Moravian. My father went there, as did pretty much all my aunts and uncles. My grandfather, who I greatly respect for his ridiculous intelligence, taught English at Moravian for forty years. I knew the college would be welcoming when the first admissions counselor I talked to went into a long story about how my grandfather had been his favorite professor.
Being a private college, the tuition was pretty steep, but one of the scholarships they offered was for students related to alumni. That scholarship, combined with a few other awards for my grades and being disabled (I knew it would pay off someday) made the school a financial reality. If you want to go to Moravian, my parents told me, we can make it work.
The college was small, with only about 300 kids per graduating class. It certainly wouldn’t fulfill the desire I had to move on to a brand new world of excitement and immensity like my friends would be getting at Duke and Penn State and Clemson. But at the same time, there was something enticing about the familiarity of knowing most of my classmates, of eating lunch in a quaint little cafeteria with a fireplace, of only having to travel a few hundred feet to get to each building. On top of that, Moravian is a liberal arts college, and although I was clueless about my future, I knew I wanted to write. Moravian would make me a well-rounded individual, not only helping me harness my writing abilities, but also teaching me to think critically and creatively.
The cheese fries in the cafeteria also caused me to have an involuntary orgasm the first time I had them, so really, I didn’t have much of a choice.
I applied, sent them my SAT scores (which were somewhat above average, but not so above that I want to brag), and was accepted! It wasn’t my dream school, and I still wish I could have gone away to somewhere awesome like University of North Carolina, but it was a great fit for me and more important than anything else, it was realistic.
I then went back to goofing off, perhaps even harder than before, for the rest of my senior year. As summer came and started to fade, more and more my friends spent their time being excited about college, getting ready, shopping for their dorms, and packing up. More than anything, I was nervous. What if I didn’t meet anyone cool at Moravian? What if nobody wanted to be my friend? What if I was the weird kid?
So as everyone started to head off in August, I got online and looked through the Moravian Class of 2014 Facebook page that someone had created. I posted a little introduction to myself, like other people were doing, and mentioned my disease and that I was looking for some people to eat lunch with, since I would need some help. A week later I had only heard back from one person. Fuck. I didn’t really want to go to college any more. Everyone would surely want nothing to do with me. I used to get discouraged pretty easily.
At orientation weekend, I started to really regret my decision to attend Moravian. The incoming freshmen were divided into small groups for a few days of tours and lectures and icebreaker type activities. Not my cup of tea to start with, but even lamer because it seemed like all the interesting, sociable people had attended a secret meeting and decided to only talk to each other during orientation. After a few painfully awkward conversations with painfully awkward individuals, I chose to skip some of the planned activities for the weekend, telling my parents they were optional.
At the final event of the weekend, a presentation by some author I had never heard of, things finally turned around. The lecture was held in an auditorium, where the only wheelchair accessible seating was down on the floor in the very front, separated from the rest of my class. Great. I sat alone for a few minutes and entertained myself by imagining the reaction I could get if I drove my chair onstage when the author started his talk.
Then suddenly there was someone next to me.
“Hey, man, what’s up? I’m Jesse. I saw your post on Facebook, and I saw you like some awesome music. So I just wanted to come say hi.”
He sat down near me and we started talking about music. His jeans were skin tight, so he was obviously cool. By the end of our conversation, we were whispering because the author had started his talk. Jesse gave me his number, and we planned to eat lunch the first day of classes. The relief I felt in that moment was incredible. Maybe college wouldn’t suck a thous
and dicks after all. Over the next few weeks, Jesse introduced me to the friends he had made, and they welcomed me into their group. Those kids would become my closest friends over the next few years.
chapter 27
head fall
Since my body lacks the protein that is vital to the creation and sustainment of muscles, working out serves no purpose because I can’t build new muscle tissue, but at the same time, never using my muscles causes them to disintegrate faster. It is kind of terrifying to imagine the muscles in my body slowly wasting away and knowing there is nothing I can do about it.
For most of my life, my neck has been my strongest body part. Whenever I am awake and sitting in my chair, I am using my neck muscles to keep my head balanced and upright. My wheelchair has a headrest, but the way I sit in my chair creates a half-foot gap between my head and the headrest. If I try to lean back to rest my head against the headrest, I lose my balance and my head falls backwards into a position that looks and feels completely embarrassing. When my head falls into this awkward position, I don’t have the strength to pick it back up, and I have to ask someone to push my head back up into position.
Until a few years ago, I never had to worry about my head falling over except when my friends drove my van and forgot that their severely disabled friend was riding in the back. However, more recently I have noticed my neck muscles getting slightly weaker, and my head has been falling over more often. It is difficult to explain the loss of dignity that accompanies losing the ability to lift your own head up. I have tried to accept the fact that this is my life and crap like this is inevitable, but when holding my head up was one of the few things I could do all by myself and it started to slip away, I became very frustrated.
When my head falls over in public, I laugh and act like it doesn’t bother me, but in reality my mind is screaming, “Fuck! Fuck! Fuck! Fucking fuck!” A delusional part of my brain tries to convince me that people view me as a somewhat normal individual until they witness my head topple over, then they realize how truly different I am.
