Laughing at My Nightmare (8 page)

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.

Am I saying that if you’re in a wheelchair and you don’t wear shoes, you are an immature social outcast? No, of course not. Unfortunately, the kids at this camp ingrained in my mind the idea that physical appearance has a big effect on how others treat me. I hate to say it, but these kids made me understand how easy it is to look at someone in a wheelchair and write him off as socially awkward because he just doesn’t look normal.

Anyway, after my parents checked me in, it was time to take my luggage to my cabin, and to meet my personal counselor who would be playing the role of caregiver during the upcoming week. I was unbelievably fortunate in that my counselor was the chillest dude ever; he genuinely treated me like I was just one of his friends, which made saying goodbye to my parents a lot easier. Once we got settled and all the parents had gone home, I began talking to the other kids and counselors in my cabin. This is when I first met Tim.

Tim is a few years older than me, so during that week of summer camp, he was probably sixteen-ish, making him one of the oldest kids at the camp. I could tell right away that Tim thought he was God’s gift to the camp. He told jokes that weren’t funny and stories that were obviously not true; the other kids completely bought his bullshit, and Tim loved that kind of attention. The best way I can describe Tim for you is that his favorite band was Limp Bizkit.

We all went outside, and Tim felt it was necessary to show everyone how fast his wheelchair was. Cool Tim, my chair is fast too. Nobody cares. The most annoying part was that Tim was pretty popular among the counselors, but in the fakest way possible. They had to give him attention; he was constantly trying to impress them, and nobody was going to deny Tim the attention he demanded, after all, he’s in a wheelchair.

The fact that Tim had the same disease as me was really what made me hate him. I felt like I knew him better than anyone at the camp. I knew his SMA did not affect his brain and social skills, so why was he acting like such a tool? A tiny voice in the back of my mind kept saying, “You’re not so different from Tim yourself.”

It was so completely obvious to me when the counselors pretended to laugh at his jokes and pretended to believe his stories. Tim seemed totally oblivious to all of this, which made me nervous. Was I misinterpreting the counselors’ interactions with me as being genuine, when in reality they were really just humoring me the same way they humored Tim? Up until this point in my life, I felt like I was pretty good at reading people’s faces and their tone of voice to determine whether they were genuinely interacting with me, or if it was the fake “you’re in a wheelchair, so I’m being nice to you” type of interaction. Tim made me severely doubt myself.

On one of the first days of camp, our cabin went to the swimming pool for the afternoon. This meant that all the counselors had to carry their respective camper into the pool so we could “swim.” Tim immediately started telling anyone that would listen about how long he could hold his breath. I remember asking my counselor to carry me to another part of the pool where Tim wouldn’t annoy us. Tim continued telling everyone about how he was a master underwater swimmer or some bullshit like that even though his counselor wasn’t allowing Tim to show off his skill for fear that Tim would drown.

Later on, a female counselor I had become friends with was holding me in the water. We entertained ourselves by making fun of Tim and his obnoxious stories. I don’t remember exactly how it happened, but she dared me to challenge Tim to an underwater breath-holding contest. I talked to my counselor about it, and he was cool with it as long as I promised to tap his arm when I needed to come up for air.

So we made our way over to Tim and his counselor, and I casually asked Tim if he wanted to see who could hold their breath longer underwater. In retrospect, I have absolutely no idea why Tim accepted this challenge, but he did.

Ready, set, go! Both of our counselors plunged us under the water to start the contest.

At this point, had there been any onlookers unfamiliar with what was taking place, they probably would have called 911 to report two heinous individuals drowning disabled kids in a pool.

I kid you not, within five seconds I noticed Tim start to freak out underwater. His counselor must have noticed too, because he pulled Tim up for air right away. I was going to stay under as long as possible just to make him feel stupid for being such a dick about holding his breath. All of a sudden, from under the water I noticed people scrambling out of the pool. There was obviously something going on, so I tapped my counselor’s arm to come up for air. When he brought me up, I was completely horrified, yet slightly amused. Tim had thrown up in the pool, and was continuing to throw up all over himself as the counselors made a huge deal out of getting him out of the water. This was all too perfect. The vomit started spreading around the pool and everyone was disgusted beyond belief. The camp officials had to cancel swimming for the rest of the day, which upset everyone.

Real smooth, Tim.