LAUGHING AT MY NIGHTMARE

Use your imagination.

I can’t tell you how many times my parents said this to me throughout my childhood. It’s a statement I’m sure most of you heard as children as well, probably in response to you whining about how THERE IS NOTHING TO DO!

Being told to entertain myself with my own imagination used to piss me off. As a kid, I expected my parents to instantly resolve my boredom by spawning new toys and popsicles out of thin air. They never did. Instead, they told me to imagine I was in outer space or to build something using my imagination. No, that’s stupid, I used to think, and I would drive back outside to sulk at the unfairness of life… at least until my imagination took over.

In retrospect, I was an extremely imaginative little kid. I had to be. How else could a kid in a wheelchair rob banks, and shoot Indians (also in retrospect, how terrible is it that my little-kid mind naturally viewed Indians as the enemy?), and hit home runs, and throw touchdown passes? Sure, I found ways to involve myself in whatever my friends and I were doing, but none of those games would’ve been any fun if I didn’t employ an active imagination while playing them. And yet, when my parents suggested I use my imagination during times of boredom, I thought they were being the stupidest, lamest, most unfun parents on earth. Weird.

Today, I value my imagination. Not only do I acknowledge that it played a large role in my childhood, but I continue to use my imagination, even at 20 years old. Maybe I’m wrong, please tell me if I am, but I think a lot of people lose touch with their imaginations as they get older. Maybe this is the case for you. If so, here are some observations—mostly benefits—that I’ve made about my own imagination over the years.

Maybe you still have an active imagination. If so, perhaps this post will have some ideas that you can relate to.

Maybe you couldn’t care less and don’t feel like reading a long story. If so, don’t read it. Just use your imagination!

Imagination allows me to experience an escape from reality. Don’t get the wrong idea; I’m not trying to say that reality is so routinely unbearable that I constantly flee to my inner thoughts to find relief. My life just isn’t that sad. But there are occasional moments when stressors such as daily life, my responsibilities, my future, my health, and my relationships converge on my mind all at once, a clusterfuck of stressors, and in these moments it’s a lot more fun to simply think about something else. In a way, my imagination is occasionally a coping method.

In my senior year of high school I experienced one of these moments. It was the middle of winter, and I was sitting in English class pretending to pay attention. My eyes blindly scanned the lines of a Shakespeare poem we were the analyzing, while inside my mind, the floodgates of Hell were about to burst. The wheezy breaths I forced in and out hinted that there was phlegm in my lungs, that I might have pneumonia. My blazing fever confirmed it.

What am I going to do? Not only could this be the sickness-to-end-them-all, but at the very least, I knew I was about to miss a bunch of school, and finals were approaching. Staying home from school also means one of my parents has to stay home and take care of me, a burden I hate to place on them. (Mom & Dad: I know you guys don’t see it as a burden. You don’t need to talk to me about it after you read this story, lol. This was my mindset in 12th grade.)

As these chilling thoughts started to take control of my mind, I realized I would not make it through the rest of the day if I continued to obsess over my present situation (I would have, but it would’ve sucked). Shakespeare was not about to divert my attention (sorry Shakespeare fans), so instead I found solace in my imagination.

I imagined things like how nuts it would be if someone in the class spontaneously combusted. I imagined what the teacher’s reaction would be if I read from right to left next time she asked me to read an excerpt, or what her reaction would be if I just refused. I imagined that the cafeteria would be serving its orgasmic burritos, even though it was a Thursday, which I knew meant they’d be serving the rubbery fucking chicken patties that made every other person have diarrhea. As I imagined these things, my nerves started to calm, the sweat on my palms began to subside. The human mind is beautiful; by simply imagining things that I found funny and enjoyable, I patched those floodgates and delayed serious panic a little while longer. Crazy.

Imagination allows me to experience—or at least come close to experiencing—physical activities that are impossible for me because of my disease.  When the neighborhood kids and I played football in the church parking lot behind my old house, I played full-time defense. Thinking back on this experience provides interesting insight into my young imagination.

On defense, I primarily played defensive back. For eight-year-old Shane, whose knowledge of football came mostly from playing NFL Blitz on Nintendo, I knew that my objective as a defensive back was to stop the wide receivers from catching deep passes. I relished my responsibilities at this position because I knew I was the last line of defense between my opponent and a touchdown. In REALITY, I did little more than drive around trying to put my wheelchair in the path of the wide receivers. In REALITY, young athletic children had no problem avoiding my hulking mass of a wheelchair. In REALITY, I might have been actually responsible for one or two dropped passes at most per game, but that’s all I needed, because I had my imagination. In my imagination, I was an intimidating force to be reckoned with out on the field. In my imagination, the offense stayed away from me because they knew there was no chance of getting past me. In my imagination, every dropped pass was because the wide receiver was fearful of me smashing into them with 300 lbs of metal at full speed.

Sure, I was delusional about my true impact on our games of football. But at the same time, I wasn’t so delusional that I ever wanted to play offense. Of the few times I ever lined up on the offensive side of the ball, I played running back, where the quarterback handed me the ball and my goal was to drive to the end zone without getting “tackled” by the defense. When my brother was on the opposing team, hand-offs to me always resulted in significant failure, because Andrew couldn’t give a fuck about pretending I was faster than him. On the other hand, if Andrew wasn’t playing, the other neighborhood kids used to LET me make it to the end zone every time I touched the ball, pretending that I was just too fast. Not even in my young imagination could I pretend that this wasn’t the most humiliating feeling on earth. Therefore, I mostly played defense.

Imagination leads to creativity. Laughing At My Nightmare, Inc. would not exist without the combined power of Sarah and I’s imaginations. I will never forget the day that she and I first had the idea to sell wristbands for my blog. We were eating together at Moravian, discussing the surreality of my blog becoming popular, when one of us challenged the other to imagine how insane it would be if we used my growing popularity to make a positive impact on the world. Over the next few months, our imaginations really took hold of our lives. Imagine if the idea of Laughing At My Nightmare became a nationally recognized message. Imagine if it went global. Imagine if we sold stuff to further promote the message. Imagine if we sold wristbands. Imagine if we turned this into a business. Imagine if we did more than sell wristbands. Imagine if we made movies and did speaking tours. Imagine if we started a nonprofit organization. Imagine if we needed to hire a lawyer. Imagine if our nonprofit became famous. Imagine if it became our lives.

And before we knew it, our imaginative creativity was becoming reality.

My imagination is also an infinite source for humor. A large percentage of the things my friends and I laugh about involve imagining ridiculous, hypothetical scenarios. Imagine if I tried to drive my chair down the escalator at the mall. Clearly, I would die. My chair would immediately roll forward and my neck would break before I was even halfway down. That part isn’t funny to me (I lie, it is), but can you imagine the utter disbelief of a random onlooker, watching a kid in the wheelchair confidently hurl himself down an escalator?  That’s what makes me laugh.

Now that I think about it, most of the scenarios we imagine involve putting me in physically or socially awkward situations. The other day Andrew came to me with an idea for a funny video: “We are going to tie a leash around your wheelchair and then go to Wawa. Someone can film us from far away as I walk you to the front of the store and tie the leash to one of the bike racks. Then you will just sit there while I go inside and buy food.” Brilliant. A video will be coming soon.

We imagine public places where Andrew could get me out of my chair and lay me down (i.e. the counter at McDonald’s, the middle of an aisle at Walmart).

We also imagine ways for me to react to people trying to shake my hand, such as hissing at them or pretending they squeezed my hand too hard and broke it.

Lastly, and perhaps most importantly, using my imagination minimizes the scariness of my future. Living with the knowledge that my body is on a gradual downward slope makes the future a daunting enigma of uncertainty. Uncertainty is scary. I’ve said it before, but I don’t like my chances of finding a girlfriend, getting married, and having kids. In addition to that, every winter brings with it a new set of illnesses that threaten my life, and they only become more threatening with every year that passes. It should not surprise you that I don’t enjoy thinking about my future in terms of reality.

With all that being said, I’m able to remain optimistic by thinking about my future within the confines of imagination. Sometimes I imagine a doctor calling to inform us that they’ve found a “miracle” cure, and how beautifully perfect that moment would be. I also enjoy imagining myself 20 years from now, still living with SMA, but with a wife and kids and a career that I love. I imagine traveling the world, and meeting people, and sharing my story, and leaving an impact.

I need you guys to understand something, though. My imagination is powerful, but my determination to turn these imaginations into reality is even stronger.

http://www.quickmeme.com/Frustrated-FIFA-Ferdinand/

Jon is the kid from this story.

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When I was very young, I learned that being in a wheelchair did not mean I couldn’t play sports. Obviously, the way I play sports is a little different, actually a lot different, than the way most people play, but I have found a way to involve myself in almost every sport my friends have ever played. Throughout my life I also experimented with joining organized sports leagues designed specifically for people with disabilities, which was absolutely terrible simply because I understood the sports on a much higher level than the other kids. I promise I’m not being a dick! Here, let me explain…

In my toddler years I went through the normal phase of wanting to go fast all the time. So while my childhood friends were riding their Big Wheels and tricycles as fast as they could down our back alley, I was racing right next to them in my wheelchair. My mom allowed me to ride around our neighborhood block at a pretty young age, and from that point on, my friends and I spent hours on end being cops and robbers or cowboys and Indians, as we raced as fast as we could around the block until the sun went down. My brother learned to ride a bike without training wheels when he was 3 years old, so he quickly joined us in our daily adventures.

It was during these days of non-stop play that I mastered driving my wheelchair at its top speed, which is 12 miles per hour. Cops and robbers is basically just another name for tag, so I developed the ability to chase people at top speeds, all while constantly monitoring their speed to assure I didn’t slam into them and kill them if they stopped quickly or changed directions. Today, people are always amazed by how well I handle my wheelchair, and I have to give all the credit to my childhood days of chasing my friends around our block.

Naturally, as we got older we became more interested in sports, and our games of cops and robbers turned into games of football, basketball, soccer, baseball, and hockey.  You might be wondering how I was able to play these sports with my friends. That is what I am here for…

When we played football I was usually on defense all the time. Since we didn’t have any really big grassy areas to play on, our football games where two-hand touch anyway. We adapted the rule so that all I had to do to “tackle” the ball carrier was get my wheelchair within a foot of his legs. This got really dangerous when my friends were running around at full speed and I was trying to get within a foot of them without running them over. When someone on the offense would run out for a pass, they had to deal with the 400-pound wheelchair flying towards them while they tried to catch the ball. Every once in a while I would accidentally nail someone in the shins, which was enough to cause them to fear me for the rest of the day.  I didn’t like to play offense when we played football because all I could do was run with the ball, and I knew my friends were faster than my wheelchair, so if I ever scored a touchdown, it would only be because they let me, and I hated that just as much as they did.

On the basketball court, I can’t shoot, pass, or catch the ball so I basically just drove around, getting in people’s way, trying to make them mess up. None of us were ever really into basketball so we didn’t try to figure out a way to incorporate my wheelchair.

Quick story, when my brother was in 7th and 8th grades, he played on our church’s basketball team with a bunch of kids who had no idea how to run in a straight line without falling, let alone dribble a basketball or do anything close to productive on a basketball court. I had to do community service for my high school’s graduation requirement, so I volunteered to help coach the team. It was hilarious watching these kids try to learn the offensive plays, when a majority of them barely knew how to make a layup. I will be honest; I spent most of the time laughing with my brother about how much of a joke the team was. My brother is a decent basketball player, however, he was not nearly good enough to carry the team in games against other churches, and I think we may have won 4 games total during my 2-season tenure. The guy that was in charge of the entire league made a really big deal out of presenting me a Coach of the Year award during halftime at one of the games. It was an extremely nice gesture by him, but I felt bad because he and most of the spectators in attendance didn’t realize how much of a joke I made out of coaching this team. All they could see was a kid in a wheelchair that hung around with the team and was an amazing individual for wanting to coach despite his disability.

Moving on to baseball, which is difficult to play just for fun, so as kids we played a lot of wiffle ball. I can’t bat, throw, or catch, but baseball is my favorite sport, so whenever we played, I would pinch-run for my friends. Basically, I just made a huge deal out of the base running aspect of baseball. I stole bases like Ichiro. Honestly though, I got just as much enjoyment out of watching and being the umpire. 

As we grew up, my brother realized he was actually really good at baseball and spent most of his summers playing on various teams. He and I spent a lot of time discussing and practicing baseball when he wasn’t playing for a team.

I’m not sure how or why, but my parents found out about a baseball league designed for people with severe disabilities, whether they be physical or mental, and suggested I try it out. I was probably 10 or 11 at the time, not quite sure, but I vividly remember this terrible experience and all the reasons I hated it.

The league was called Challenger Baseball League (worst name ever) and their motto could have been something like, “Where everyone wins!” I showed up to the first game in my bright orange uniform, totally excited to kick some ass. Jesus Christ, I was in for a rude awakening. One of the first things I noticed, while we were waiting for all the players to arrive, was that literally all the kids seemed more disabled than me. (From here on you need to keep in mind that I am not making fun of these kids, just telling you the truth.) Most of them were either: talking to themselves, drooling, having severe tantrums, or trying to escape from their wheelchairs. I immediately felt out of place because there was no way on earth these kids understood baseball.

Once both teams had gathered, the coaches started explaining the rules. Each kid would be accompanied by a parent at all times, whether batting or playing the field. Ok that made sense; I had planned on my dad helping me do the physical stuff, and on the way to the game we had even discussed how I was going to quickly communicate to him where to throw the ball when we were in the field. I made him repeat to me that I would always want him to try to get the lead runner out, unless we had the chance to twist a double play.

Rule number two: Nobody is ever out. Every batter gets to bat once an inning, run the bases, and score. Also, there was no score being kept.

WHAT THE FUCK?

That rule caught me way off guard. This was becoming no fun and we hadn’t even started playing. However, when we did eventually start it got so much worse. I was the very first player up to bat, and my dad hit a slow roller to a kid in a wheelchair at shortstop. This particular kid had some kind of disorder that caused his head to be constantly moving in all directions, and it was very obvious he didn’t really know what was going on as his mom moved him to the ball and picked it up to put in his lap. Meanwhile, I was booking it down the line to first. I stopped at first base, kind of disappointed that his mom hadn’t tried to throw me out. Although it’s probably good that she didn’t, because the kid playing first was playing with the dirt. For a second, I stayed on first and thought, “wow this is stupid.” And then it got even stupider. The fans, coaches, and parents helping out were still cheering for me. It took me a moment to realize what was going on, but then it clicked, they wanted me to keep running the bases. Nobody was even going to try to get me out. So I reluctantly began towards second base, not even bothering to go fast, proceeded on to third, right past the kid with the ball on his lap, and eventually made my way to home plate. It was the most degrading and unrewarding feeling I had ever felt up to that point in my life. Everyone just worked together to let me get an inside the fucking park home run on a ball that barely made it past the pitcher’s mound.  All the parents and coaches emphatically congratulated like I was safe at home because of my chair-driving ability. I didn’t even have to say anything to my dad; he knew I was completely done with this league.

Unfortunately, my dad made me stick out the rest of the season to teach me the lesson of finishing what you start, but we spent most of the games making fun of how god-awfully fake and unrealistic the games were. Don’t get me wrong, I think the Challenge League is a great program for lots of kids; it provides a unique experience for many disabled kids who all really enjoy it, but the fact that I was cognizant of how fake it was made it impossible for me to enjoy.

A couple years later my parents talked me into joining a “Challenger” style, bowling league. To bowl, I use a ball ramp that is available at most bowling alleys. Basically I just line it up by bumping it with my wheelchair and then push the ball down.  Challenger bowling was fun for a couple weeks, until a kid in my lane had a severe seizure during laser bowling. That was the end of me trying to participate in sports leagues with my wheelchair brethren. I just couldn’t fit it or have fun with those kids. I’m an asshole.

Rewinding back again a few years to fifth grade, and I will tell you about my greatest moment involving sports. My elementary school had an after-school intramural sports program for the 4th and 5th graders. When the floor hockey sign ups came around I decided I was going to try it. In the past, I had played floor hockey in gym class by taping a stick to the front of my chair, so I knew I could do it.

On the first day of floor hockey, when we would meet our team and go over the rules for the season, the gym teacher in charge was kind of taken back by me being there. For obvious insurance reasons, he was hesitant to let me play, but I convinced him to let me if I only played goalie.

I don’t remember if my team was initially happy or sad to have me, but after a few games they were certainly happy. It turns out, my 400-pound wheelchair took up most of the goal, and I was good enough with my wheels to deflect any shots that kids tried to slide under me. 

To make a long story short, our team made it to the championship game that was played against another elementary school. On the day of the final game, the opposing team entered the gym and lost control of their jaws when they saw me sitting in the goal, focused as shit. We won the game, mostly because our offense was saucy, but I had a few key saves to seal the deal. Winning that game is still a story I often tell today, because it is a good example not letting my disease get in the way of normal life.

Today, sports are still a huge part of my life. I don’t play them as much or with as much intensity because I’ve become a lot more fragile over the years, but I go to all my brother’s baseball games and my friends and I are constantly watching or attending professional sports games.

My favorite teams are the Philadelphia Phillies, the Philadelphia Eagles, the Denver Nuggets, the Philadelphia Flyers, and the Philadelphia Union.

(Source: laughingatmynightmare)