Laughing at My Nightmare (15 page)

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 thousand 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.

On my first day of college, I rolled into my first class of the day, knowing almost nobody and nervous as shit that I would remain friendless through the next four years. I pulled my chair up next to a kid and asked if I could sit by him. He agreed and we briefly chatted until the professor walked in and began class. So far, in my mind I had assessed the situation as a success; the kid sitting next to me wasn’t being awkward about my disability and now that class had started I patiently waited for a chance to answer a question in a way that would show the other students I was not mentally challenged. I know, I have some odd insecurities.

Anyway, as the class proceeded, the professor started writing some notes on the chalkboard. Suddenly, his piece of chalk broke and fell against the metal chalk-holder below. I must have been daydreaming because the sudden loud noise was enough to make my body flinch. I was unprepared for the flinch and sure enough, I lost balance of my head and it started to fall. Using all the strength I had, I tried to keep it upright, but I didn’t react fast enough and my head fell all the way back. If you want a mental picture of what I looked like, tip your head back as far as you can and keep it there. I was now sitting in class with my head stuck in that position.

It felt like every single person in the classroom was staring at me, probably because most of them were. Only about thirty students were in this particular class, so the small classroom made it all the more obvious. There was no way my professor didn’t notice, but he continued the lecture as if nothing had happened. For a moment, I sat there with my head back, as the situation sank in. It might not seem like a big deal, but in that moment I reasoned that I would probably never make friends during college; people would never feel comfortable approaching me. Then reality hit and I needed to decide how I was going to get my head upright, because having my head so far back is also kind of painful. The kid next to me was either completely oblivious to what had just happened, or pretending he didn’t notice. The following is the whispering conversation we had as I awkwardly tried to get help without drawing more attention to myself:

Me: Dude … can you like … push my head up for me … I’m stuck [awkward fake laugh].

Kid: Um, what?

Me: [quiet but real laugh as I realized how ridiculous I must look] My head fell. Can you push it forward?

Kid: Umm, I don’t know … how?

Me: Just put your hand behind my head and bring it forward.

He did what I asked, but didn’t push my head far enough forward for me to regain balance, and it fell right back to where it was before. It took him two more tries until my head was in the right position. I thanked him and sat there feeling utter embarrassment and guilt for putting him in that situation.

chapter 28

an evening with michelle

During my sophomore year, my good friend Lily surprised me with an awesome phone call. “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”

I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my nondisabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.

In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches, and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was going to speak in the basketball gym at Moravian, a smaller-ish building that does not have a built-in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.

I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”

“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.

SMA does not cause seizures; I’ve never had one in my life, but toss out the word
seizure
next time you’re trying to get something from a person of authority, and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.

While waiting in line to get in, secret service agents approached us and instructed “my companion” and me to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a Republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him.

The gym was packed. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit. it’s a thousand degrees in here,” and “Where the hell am I supposed to sit?”

Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.

A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She led us down a narrow path created by a rope barrier along the edge of the gym.

When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.

Someone off to my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this wasn’t the first time this awkward situation had arisen, so I didn’t let it get to me.

A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.

I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and ultimately, it was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.

Fast forward a few hours, the speech was pretty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it to. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who had spent a majority of the speech yelling, “DOWN IN FRONT!” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon. In front of me sat a very old man who read a very graphic war novel the entire time Michelle spoke and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.