Last year, I posted a list of resolutions that I intended to accomplish throughout 2012. Other than “Don’t drop out of college,” I failed to accomplish most of the goals I set for myself last New Year. Does that make me a failure? Of course not. It means I’m a winner, and the goals I set for myself were unrealistic and stupid. With that being said, here are all the things I promise to get done in 2013. I hope that my list inspires you to truly challenge yourself to be the best person you can be in the coming year!
1. Drop out of college.
My goal last year to stay in school was too easy, not to mention extremely boring and repetitive. Wake up. Go to school. Come home. Do homework. Smash face on table until bloody. Go to bed. Repeat. Lame. If I’m being completely honest with myself, the allure of graduating just doesn’t seem worth the early morning showers for another year and a half.
So instead, I challenge myself to drop out of college as fast as possible.
And I don’t want to just stop attending classes or doing work until I fail out. That’s been done before. I want the administration to remember my failure for its spectacularness. This semester I will write all assignments with a heavy use of expletives (i.e. William fucking Shakespeare’s shitty poem, “A Fairy Dickhole Song,” is about stupid fucking fairies doing stupid shit with flowers and dew or some shit).
But just writing bad essays won’t be enough, which is why I will also start lighting other students on fire when they answer questions incorrectly during class.
2. Learn how to tie a knot in a cherry stem with my tongue.
Oh wait, I can already do that one. Ladies…
3. Make the school basketball team.
For the past three years, I’ve tried out for the Moravian College Varsity basketball team. All three years I’ve lasted until the final day of cuts before being called into the coach’s office to be informed that I wasn’t going to make the team. “Every time anyone passes you the ball, it just kind of bounces off your head and falls to the ground. I haven’t seen you dribble or shoot even once, and I don’t think it’s safe to let you on the court in a game situation,” he says every year, which I know is his way of saying that my three-point shooting isn’t good enough yet.
I’m obviously a low post/rebounder/big man/high-flying/shot blocker type of player, but if coach wants me to be a sharp shooter, so be it. At some point, my practice routine of 5000 three-pointers a day is going to pay off.
I’ve also significantly improved my vertical. Clearly, this is my season to shine. Tune in to ESPN next fall to see me on SportsCenter’s Top 10, making it rain on our opponents with my salty treys and dirty dimes. Beyond the arc or down low, it doesn’t matter; I’m about to ball so hard in the paint.
4. Get my book published.
I’m very serious about this one.
5. Lose some weight.
Every year I hear the people in my life make resolutions to lose lots of weight. Since I weigh about 1/3 the weight of a healthy adult human, these weight loss resolutions have always seemed rather pointless to me.
However, since I began using the feeding tube that I insert nasally every night, I’ve gained over 16 pounds. I’m up to 62 pounds from my low of 46 last year. “That’s so great, Shane!” say most people. No. Wrong. That’s a horrifically disgusting 34.78% weight increase in just a little over a year. I’m a fat slob, and it’s time for me to take some responsibility for my rapidly accumulating pouches of flubber. Have I no decency?
If I’m ever going to look good in yoga pants, I need to lose around 10 pounds. I’ve considered trying the “Wallpaper Ingestion Cleanse” where you eat nothing but coarse wallpaper for 48 days. It guarantees results, but also comes with the relatively high risk of complete intestinal destruction, so that’s off the table unless I become desperate.
The feeding tube is obviously the culprit of my weight gain. Receiving over 1400 calories per night means that when I wake up in the morning, I’ve already eaten enough calories to last me the day. I love eating, though. Piling on a few hundred extra calories throughout the day is common given my normal diet of junk food and McDonalds and junk food. Changing my “day-time” diet would be the healthy and mature way to lose weight.
But instead, I’ve decided to replace my feeding tube supplement with Lipozene weight loss pills dissolved in sparkling water. Sparkling just because I’m fancy. See you at the beach! I’ll be the one with the beautiful bikini body.
6. Enter (and win) the Special Olympics.
Sadly, I don’t think there are any events that I’d even qualify for. They might let me do some of the races in the early, not-so-serious stages, but after that I’m pretty sure you have to be actually athletic to participate in events. You’d think they (The Special Olympics Governing Body) would include a few events for people with more severe physical limitations, like cross country electric wheelchair races, or electric wheelchair deathmatch jousting, but I guess I’m just too disabled to join in their reindeer games.
7. Start my own professional wheelchair jousting league.
This could be epic. Competitors will conduct the jousts on elevated platforms, hanging hundreds of feet above pits of fire and sharks and thumbtacks. Wheelchairs will be outfitted to hit top speeds of over 100mph so that when impact occurs, skulls will smash, bodies will be pulverized, limbs and metal will go flying, and only the strongest will walk (lol) away champion.
Tell me what you think! Not sure how I feel about it yet.
My cat Roxy caught a baby blue jay last night,
despite being fed a gourmet spread
served on a platter, finely shredded.
She mauled the mangled mass of
bright blue feathers dripping dark red;
almost not alive, yet not completely dead.
Desperately chirping with a broken beak,
feeling its skin pulled apart
by claws and teeth,
Deserted on the doormat to die,
the pulverized pulp of the once baby bird,
searched for answers with its one remaining eye.
Then it stopped breathing and I
could have helped, but didn’t even try;
too consumed by images of my own demise.
Roxy and I are a lot alike I find;
I don’t care for the taste of blood,
but I can be ruthless from time to time.
You shouldn’t be surprised. Putting it simply (because I’m an English major and don’t have the scientific knowledge to put it any other way), the human body is held together by a framework of muscles and bones. SMA is a muscle wasting disease, which you should know by now basically just means my muscles are shitty at doing anything that muscles are supposed to do, and they’re constantly getting shittier. Don’t believe me? Since I started this blog 16 months ago, I’ve lost the ability to lift my hands any higher than mouth. When my nose or eyes or forehead itches, which seems to be all the fucking time now that I can’t reach those spots, I have to ask someone for a fork or a straw which I use to relieve the itch. Yes, it looks weird, but it’s better than constantly asking other people to itch my face for me. Anyway, my muscles, a large part of my framework, suck.
Another side effect of having shitty muscles is having shitty bones. If you’re not aware, bones that don’t bear weight for long periods of time become extremely weak and easy to break. My doctors tried to delay this process as much as possible when I was a little kid by making me use a “stander.” The stander was a torture device that held my body in a faux-standing position (like a fauxhawk, but different). My legs could never support the entire weight of my body, but the idea was that if I used the stander every day, forcing my legs to bear at least some weight, my bones would strengthen and not become as weak later on in life. However, 5-year-old Shane did not appreciate this logic and thought of the stander only as another way for his therapists to hurt him. I avoided the stander as much as possible and eventually my muscles and bones became so weak that standing in the stander became too painful to bear. I’ve been either sitting or lying down ever since, bearing almost no weight, and this has caused my bones to become pretty weak over the last 20 years.
We now understand why I’m fragile. However, I’m guessing it’s difficult to conceptualize how fragile (or how not fragile) I actually am. I don’t want you to think that flicking my arm will cause a compound fracture, but punching it with any amount of force might. If we ever meet in person, please don’t punch me.
To give you a better idea of my fragility, here are some things that would probably break me:
I suppose you can think of me as a toddler, in terms of how easily broken I am. (Are toddlers easily broken?)
My fragility is not, however, the only point of this post. Instead, I’d like to tell you about a recent event in my life when I legitimately feared for my safety because of my fragility. Let’s begin.
Several weeks ago 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 non-disabled 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 speaking 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 to Johnston Hall, secret service agents approached us and instructed “my companion” and I 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. Spoiler alert: I’m not a terrorist; that’s not where I’m going with this story.
The gym was packed to capacity. 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 1000 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.
(In noisy places, surrounded by people who’s heads are generally 2-3 feet above mine, it’s easy to feel small and insignificant. Even when screaming at the top of my lungs, I don’t have the lung capacity to be very loud. I’ve grown accustomed to not having much of a voice at loud, public events. I rely on facial expressions and the voices of my companions to communicate with other people.)
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 motioned to follow her and 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 the 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 isn’t the first time this awkward situation has 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 it ultimately was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.
Shane, not to be rude, but why the fuck did you start this story by telling us how fragile you are?
Calm down, agitated reader, I’m getting there.
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 too. 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 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 the making. In front of me sat a very old man who read a very graphic war novel and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans. One of them was black, 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.
Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.
When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and JUMPED out of her chair. I kid you not, she literally leapt out of that fucking wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards Michelle.
This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.
To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.
Clearly I did. Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way. She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.
Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obama’s probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.
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.
The fact that I am disabled is deeply ingrained in my mind. Everything I do, every funny, awkward, unusual, and annoying event in my life—even boring daily routines like brushing my teeth—is affected by my disability. Living this way for 20 years has made me almost numb to it. When I’m lying on my bed, peeing into a jar, staring at the ceiling while I relieve myself, I’m not thinking, “This is an odd way to go to the bathroom compared to able-bodied people, what a peculiar result of my disability.”
I’m just going to the bathroom, probably not thinking about anything.
Obviously, I’m aware of all the ways my disability makes my life abnormal. If I weren’t, this blog would just be pictures of kittens, and Justin Bieber, and GIFs of Tyler the Creator laughing, and more pictures of Justin Bieber. But I’ve never truly taken the time to consider how my disability has helped shape my identity.
I’ve been working on a project lately that has unintentionally forced me to think about my own disability identity. In this post, I’m going to attempt to make sense of what I’ve been learning about disability identities, and subsequently, what I have learned about myself along the way.
As I mentioned a few months ago, one of the psychology professors at Moravian College, Dr. Dunn, asked me to work with him over the summer to compose an article on disability identity. I agreed immediately even though I admittedly know very little about psychology. Dr. Dunn has written an immense amount of work and done numerous studies in the psychological field of disability, so I figured it would be a learning experience for me. It was.
At its most basic level, for someone with a disability, disability identity involves feeling positively about oneself as an individual and identifying with the disability community as a whole. For our project, we wanted to look a little deeper and develop a model that identifies the most prevalent themes in all disability identities. To do this, we surveyed (or, are surveying, since we are still working on it) a variety of narratives published by people with disabilities of all types. This style of research allowed us to pinpoint recurring themes that are experienced by many or all people with disabilities.
We’ve identified six major themes that are encompassed in the identities of most people with disabilities: affirmation of disability, communal attachment, self-worth, pride, discrimination, and personal meaning (Dunn & Burcaw, 2012, in progress).
As I read these stories by other people with disabilities, I couldn’t help but to consider how each of these themes plays a part in my identity. Here is my reflection on a few of those themes.
Affirmation of disability
What it means: The belief that living with one’s own disability is a valuable experience that contributes to a positive personal identity.
On the surface, I believe that I possess this characteristic. Living with SMA has opened a world of opportunities for me, and you only have to read a few of my stories to know that I genuinely enjoy the fuck out of life. The list of amazing occurrences that were byproducts of my disability is incredibly long. Until a few years ago, one of the movie theaters in Bethlehem allowed people in wheelchairs to watch movies for free. I guess their logic was that it would take a miracle for us to make it out of our houses more than a few times a year, so if we happened to overcome all the odds and make it to the theater alive, we should be rewarded with a free movie. Obviously, I abused the free movie privilege so much that I wouldn’t be surprised if their reason for eventually revoking the policy was, “that asshole kid in the wheelchair who saw a movie every other day for three years.”
However, as I read more about affirmation of disability, I found a small caveat that I could not agree with. In a study of people with disabilities, it was found that many of them were strongly opposed to receiving any type of treatment that might cure them of their disability. Granted, this is not to say that one must choose to not be cured in order to have a positive affirmation of their disability, but I was baffled by the results of this study.
Sure, growing up with my disease has substantially influenced the person I turned out to be, but given the hypothetical opportunity, there is no question in my mind that I would choose to be cured. My identity and personality would not suddenly vanish just because I’d be able to walk and run and kick people in the face. Yes, I love my life, but I would be lying if I said that I’d choose to stick out the fight with SMA if I didn’t have to. That’s not like… cowardly, is it?
What it means: A desire to affiliate oneself with the disability community as a whole, a preference to associate with other people with disabilities.
If you read my story about muscular dystrophy summer camp, you’ll remember that I generally don’t enjoy hanging out with other people in wheelchairs. It may be because I developed an aversion at a young age and never gave myself a chance to get to know anyone that uses a wheelchair. It may also be that I’m not around people in wheelchairs very often in everyday life. It may be that I see everything I dislike about myself in other wheelchair people, so I avoid them to protect my self-esteem. It may be that I’m just a terrible person. In that regard, I do not possess particularly strong feelings of communal attachment.
I do, however, realize that I am a part of the disability community, and that we have a lot in common. We all face the difficulties of living in a world that is still far from being handicapped accessible. When I see a restaurant that has one fucking step to get into the front door, I don’t get angry because I personally can’t eat there, but rather, at the fact that the owners could be so ignorant. They might as well hang a sign on the front door that says No Wheelchairs Allowed. I’m looking at you, Subway.
What it means: The idea that one values oneself, in regard to one’s ability to perform tasks that are deemed important by the individual, others, or society (Dunn & Burcaw, 2012, in progress).
Let’s be honest, there are just some things that I will not accomplish in my lifetime. I’ll probably never win the MLB home run derby, and chances are I’m not going to break any Olympic records. I will never tie my own shoes or wipe my own butt. I will never be able to drive a car, or a boat, or a plane. I’m pretty sure I will never become the President of the United States.
Society values all of those things.
But I will make you laugh, and I will go to school and get a degree, and I will do awesome things with my friends, and I will do stupid things with my friends, and I will try my hardest to make my nonprofit succeed, and I will get my book published someday, and I will kick your ass in FIFA, and I will get a real job, and I will live life with intense passion, and I will make you laugh, and laugh, and laugh.
And that’s what I value.
This is a new blog written by a 20-year-old with the same disease as me. He’s a cool dude and I have read some of his stories and they’re really great. He’s going to post his first story soon, but he asked me to give him a shout out so that he would have an audience when he posts. It’s definitely well worth your time to add him to the blogs that you follow.
“Mom, PLEASE!” I whined. She had to say yes. She had to.
“I just don’t understand why you need to be up on his porch,” she replied for probably the 5th time, starting to get annoyed.
“Mom, we want to have a HUGE battle and there are no good places to hide our army men down on the sidewalk. All you have to do is carry me up there, and I’ll stay there for a long time, so you won’t have to help me back into my chair for a while. Please!” I argued back, knowing how upset my friend Ben would be if we had to set up our toy army men figures down in his front yard where we always set them up.
“Fine, let’s go.” She gave in, and my excitement soared.
Sitting anywhere other than in my wheelchair was difficult, but my mom positioned me with my back in the corner of two walls on the concrete floor of Ben’s front porch. It was uncomfortable, but supportive enough to hold me upright. I promised her that I would be careful and that she could go back across the street to our house. I reiterated that I would not bother her again for a long time.
Ben brought out his enormous tub of green army men, and we began setting them up in awesome arrangements around his porch. (Looking back, I realize this is all we did. We simply enjoyed “setting up” the army men for battle, but we never actually played the “fighting” part.)
Then we heard the buzzing. A cicada killer swooped down from the trees above and landed on the floor a few feet away from us. Bees of any kind scared both of us more than a little. We froze. Unaware of what a cicada killer was at that point in our young lives, the two of us stared in horror at the biggest hornet either of us had ever seen. This beast could have easily stung us both to death and swallowed us whole with little to no problem.
I panicked; “helphelphelphelphelp” was all that came out of my mouth.
“I’ll go get your mom,” said Ben, bravely standing up and preparing to dash past the slowly approaching monster.
“NO PLEASE NO! She’s going to get really mad if I ask her to come back so soon! Don’t leave!” I cried. In reality, my fear of getting stung by the giant hornet far exceeded my concern for irritating my mother, but I was also equally afraid of being left alone to die while Ben went to find my mom. I am completely helpless when I’m not in my wheelchair. Even at the age of five, Ben was a loyal companion; he wasn’t going to leave me stranded on his porch.
The next several minutes are cloudy, probably the result of my brain repressing this awful experience, but somehow we ended up huddled in the corner together, armed with a large bottle of insect-repellent cream.
Naturally, we assumed that the cicada killer would want nothing to do with us if we smelled like insect-repellent… so we showered ourselves in it. We smeared handfuls of the white cream on our arms, legs, and faces, not even bothering to rub it in. I had Ben pour the cream on the top of my head and also asked that he put a few globs in the open end of my shorts, which were hanging wide open due to the way I was sitting with my knees up. Ben did the same. You could have smelled us from a block away, and our clothes were ruined, but we felt a little safer and ready to take on the killer.
No sooner had we prepared for the battle of our lives, the cicada killer decided to fly away.
It’s 3:00PM on a humid day in July. Instead of racing around outside with my neighbors like I should be, I’m sitting on the toilet, strapped into my specially adapted backrest, quietly weeping at my ridiculous situation. What is wrong with me? On my bare lap sits our house phone, waiting for me to gather the nerves to call Ben.
A few hours before I found myself crying on the toilet, Ben and I had been spending the day the same way we spent every day of our summers, playing cops and robbers, cowboys and Indians, and other crazy games of our young imaginations. On that particular day we were constructing an epic volcano in Ben’s backyard sandbox. By “we” I really mean Ben. Sitting in the sandbox was difficult for me at this point in my life, so I sat above in my wheelchair and played the role of bossy six-year-old who wants to help but can’t sit in the sand.
“The left side needs more sand.”
“Careful you’re gonna wreck it.”
“You should try to dig a moat around the outside.”
“Oh my God! Move, move, move! I just saw a huge pincher-bug by your foot!”
The pincher-bug I spotted quickly destroyed our desire to finish the sand volcano, even though Ben’s mom was going to allow us to make it erupt with vinegar and baking soda. Instead, we spent the next hour spraying stuff (mostly each other) with Ben’s garden hose. It was around this time, after drinking copious amounts of water from the hose, when I noticed that I needed to pee.
In my early elementary school days, I viewed going to the bathroom as nothing but a nuisance. During the summer, bathrooming meant stopping whatever awesome game Ben and I were playing, returning to my house, having my mom carry me upstairs to the bathroom, undressing, using the toilet, redressing, being carried back downstairs, and finding Ben again. The whole process probably took 20 minutes, but that’s a lot of time to a six-year-old. For this reason I chose to ignore my bladder on most summer days, holding my urine until it became painful and then some.
The “full bladder pain” became noticeable while we were playing with the hose, but I put it out of my mind when Ben’s mom brought out a new super soaker to play with.
Half an hour later, as we quietly crept around the back of the bank that we were robbing (our neighbor’s shed) with our fully loaded super soaker, I began to sweat. My breathing became rapid and shallow. This was not a nervous reaction to the felony we were committing, but rather my body trying to tell me that I was going to explode if I didn’t pee soon. But you don’t just go to the bathroom in the middle of stealing one billion dollars from the most highly guarded bank in the entire world.
When the bank guards open fired with their machine guns, Ben leapt behind a birdbath and fired back at the windows of the shed. It was the climax of the heist. Ben desperately shouted for me to run in for the money while he covered me, but I couldn’t pretend anymore. I couldn’t even move. A small trickle of urine forced its way out of my body and I lost control.
I closed my eyes and basked in the orgasmic feeling of my painfully swelled bladder emptying. Nothing on earth mattered. Not the fact that I was peeing in my pants. Not the fact that I was doing so three feet away from my best friend. Not the fact that I was in the middle of my neighbor’s back yard. Not the fact that halfway through the emptying I was sitting in a warm puddle. Not the fact that six-year-olds don’t pee in their pants. Not the fact that it was running down my legs into my shoes and socks. Not the fact that my mom was going to kill me. Not even the fact that Ben had been shot by the guards and was now lying dead next to me.
“I’ll be right back.” I said nervously as I finished peeing and started for my house. I didn’t think Ben noticed what had just happened, and keeping it that way suddenly became my biggest priority. He’d obviously never treat me the same way if he knew I was a baby that peed his pants. I was entirely convinced that he would associate me peeing in my pants with me being in a wheelchair and he wouldn’t want to be my friend anymore.
I dialed Ben’s house number through watery eyes from the seat of the toilet. His number was the only phone number besides our own that I knew by heart, probably from calling it every morning to find out when he could come outside to play. As it rang I gritted my teeth and tried unsuccessfully to stop my hyperventilating breaths. I hated my mom for making me do this. She had reacted exactly how I had expected her to when I arrived home. Lots of yelling about how I needed to learn to stop what I was doing when I had to go to the bathroom. Playing is not more important than taking care of your body, blah, blah blah.
When she asked if I still needed to go more, I lied and said that I did, making the brilliant reasoning in my six-year-old brain that she would not be as mad if she knew that I had at least been able to somewhat control my bladder. She was. My chair was literally dripping with piss.
After strapping me onto the toilet, she handed me the phone and said, “Call Ben and tell him why you are not allowed back outside today.”
I stared at her in horror, knowing she had already made up her mind.
Ben’s mom answered the phone, “Hello?”
“Hi… is Ben there?” I sheepishly asked. I felt like she knew.
“I’ll go find him. I thought you guys were outside…”
“Hello?” It was Ben.
“Hey Ben,” I started crying again, glancing to make sure my mom wasn’t in the bathroom, “Ummm… I can’t come back out to play.”
“Aww man! Why not?” he moaned.
“Well I was really really sweaty when I got inside, and (huff huff huff) my underwear and shorts and wheelchair were like wet from the sweat, but my mom thought it was pee so she grounded me. She thinks I peed in my pants.” I lied, still extremely embarrassed by the fake story I was telling him.
“Oh… darn. Ok well can you play tomorrow?”
Tomorrow we did play, but before we tried to rob the bank again, I went back to my house to get ammo and body armor (and to use the bathroom).
My dad, author of The Sidecar Kings (<- click to buy, proceeds benefit the MDA!), has been doing lots of writing lately… about me. When I started reading his stories, I will admit it was a little weird, seeing my life through someone else’s eyes. After I got over that tiny emotional hiccup, something else occurred to me: his stories were excellent.
Without giving too much away, I’m excited to announce that my father and I will be working on combining our collective experiences of my life into a book! We both agreed that a book offering two unique viewpoints of my unique situation will have a much better chance of success than if either of us tried to write a book on our own. I’m better at handling the comedic aspects of my life, and as you’ll see in a minute, my dad is better at the emotional.
So without further ado, here is a story from my dad’s collection. Take a few minutes to read it, and if you would like to contact him about his book, our book, this story, or life you can email him at firstname.lastname@example.org
“This past May, Ride for Life was at Hershey Park. There aren’t too many rides Shane can go on because of his inability to control his balance, but there are a couple. One of them is a giant Ferris wheel, the kind with circular gondolas.
As is the case with every amusement park, the handicap accessible entrance is always the exit of the ride. This ride was elevated, so we had to go through the exit gates. At the gates a group of kids were waiting for their friends to come off the ride. They inadvertently blocked our way and when they saw Shane, they peered at him like he had just fallen from the sky. We all got used to that “circus is coming to town” look long ago, but it’s still something we’d rather do without.
Anyhow, once we got past the gawkers, we continued on up a long switch back ramp and finally ended at the ride exit platform. Some riders were just getting off as we approached. Since it was the first weekend the park was opened for the season, the ride operators were still going through their learning processes. They were also cognizant of handicapped riders. As soon we appeared, one of the operators instructed us to park in a safe spot away from the ride. On the opposite side of the ride were throngs of people waiting to board… watching.
In most parks we‘ve been in, there is an unwritten “no waiting” rule for handicapped riders, so we didn’t have to wait long to get on the ride. I noticed Shane looking over at all the people and then looking away. I could tell he wasn’t comfortable, as the throng began staring, knowing we were going to be next in line, ahead of them.
When it was our turn, the operators helpfully opened the gondola door and held it open for us. Andrew hopped in first. I picked up Shane, cradle fashion and carefully stepped onto the swinging gondola. I have done this several times and have gotten pretty good at it. It’s easy to fall. I’m fortunate that I have not yet. Once in the gondola, I had to place Shane on the circular bench seat next to me, a hard plastic affair without any side support. It took several minutes to get him squared away. I awkwardly held him the best I could.
Funny thing about throngs… invariably there’s always one asshole within. Sure enough, we could clearly hear someone complaining about how long our loading took. I shot a glance in the direction of the voice but no one would look me in the face. It appeared one collectively embarrassed the all.
Once finally underway, we rose into the sky. Shane was stable enough that he was able to look around and take in the scenery high above the ground. He loves high places. Since the wheel was still loading, we stopped frequently. During one of our stops, a large hawk flew into view. The majestic bird circled around the wheel a couple of times, tipping its wings, appearing to dance on the wind currents above us. It was beautiful, close enough to see its piercing eyes looking us over. Then it disappeared, as quickly as it came.
Shane looked up at it and just above a bare whisper, he longed, “Wish I could fly like that… to be free.” I promptly looked away, my eyes immediately moist. Andrew caught me and asked what the matter was. I told him the pollen was very heavy and it was making my eyes water.
We rode the rest of the ride in silence.
Once the ride ended, we reversed the loading process, which took even more skill than loading. I managed to make it painless for Shane and once in his chair he complimented me on my acrobatic one-handed lift and grab. Two rarities, a pain free transfer and a compliment to boot.
He and Andrew raced down the ramp they came up, testing limits of tires and sneakers through the turns.
Freedom to dance on the wind… Lord let it someday be.”
This post has been temporarily for reasons beyond my control. I know, I’m sad too.
My relationship with my lovely cousin, Rebecca, is by far one of the most significant and important aspects of my life. It would take me a solid eight or nine hours to fully explain the depth of our friendship, but I will try my best to condense it into the most memorable parts. Imagine this story as a highlight reel of our friendship.
Becca and I have obviously been cousins since birth; our dads are brother. However, for the first 10 years of our lives, we rarely saw each other. She only lived about a mile from my house, but our families just didn’t hang out that often. Sure, we got together for holidays and occasionally birthdays, but for whatever reason, Becca and I kept our distance at these family gatherings. Maybe it was the wheelchair barrier, perhaps it was our different genders, but we just didn’t interact when our families got together. Also, we attended separate elementary schools, which is probably the biggest reason we didn’t become friends until later on. In fifth grade, I would not have been able to tell you much more than Becca’s name and age, but the following year the stars aligned and the greatest friendship in the history of earth was created.
Since we have the same last name and were both very intelligent young kids (completely bragging), we were placed on the same academic “team” when we entered 6th grade at East Hills middle school. This meant that throughout 6th grade we were in almost all the same classes. I arranged with my teachers to sit next to Becca in all of the classes that we had together, since the transition to middle school was a scary one. Sitting by someone I knew greatly eased my nerves, as I didn’t have to worry about teaching new people how to help me.
The first few weeks of middle school were magical to say the least. We quickly discovered that we were almost identical in terms of personality, intelligence, and sense of humor. To this day, I have not encountered another human being who shares my sense of humor so similarly.
Anyone in the Burcaw family will tell you that we have a twisted sense of humor. A majority of our humor is derived from making fun of others, but there is an important distinction that has to be made; we don’t make fun of people because we don’t like them and want to upset them, but rather because the flaws that make all of us human are absolutely hilarious when analyzed in a humorous manner. That might not make sense to you, because it’s a difficult concept to describe. The simplest way to understand it is that Becca and I make fun of people almost constantly, including ourselves, but that doesn’t mean we truly feel that way. If you were to listen in on a conversation between Becca and I, you might get the sense that we hate each other, but we both understand that the insults we hurl back on forth are not meant to be serious.
Anyway, Becca and I quickly realized that we shared a sense of humor and we hit it off instantly. Every time Becca was called on in class to answer a question, I made it my mission to try to make her mess up and laugh, and she would always return the favor when I was called on. During “popcorn” reading, which is where a student reads a paragraph of text out loud and then chooses the next student to read, we often got in trouble for “popcorning” the same two or three students, either each other or our friends, because we were all trying to fuck each other up when we had to read aloud. There were a few occasions when we had to stay after school to explain to our teacher why we spent most of the class period laughing. We were actually pretty obnoxious now that I think about it, but we had fun.
Although we were not in many of the same classes for 7th and 8th grade, our relationship continued to grow as we spent almost every day together after school was over. Usually we would hangout out one of our houses and not really do much besides watch TV, eat food, and laugh our asses off. That’s the best part about our relationship; we don’t actually have to be doing anything to have fun.
When high school rolled around, I took it upon myself to make sure that Becca and I were together as much as possible. Because of my disability, I had a disability plan that outlined all the adaptations I needed for school each year. Throughout all four years of high school my disability plan had a clause that stated that I could request to have Becca in my classes if it was possible to coordinate our schedules. We justified it by saying that Becca was the only one who knew how to help me out, which was slightly true, but the reality is that anyone could have helped me and we just wanted to be in the same classes.
Being in the same classes together created lots of interesting situations during our high school careers.
First of all, Becca and I should have received a single high school diploma when we graduated, because there were not 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 50-50 to maximize productivity. Some of our teachers even knew about it, and they would joke that we should just receive the same grade on all of our assignments. Sometimes our cheating methods got a little ridiculous, as in, Becca would do all our 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 can do completely on my own, shhhh). To all our past teachers that might read this, don’t hate us!
Another clause of my disability plan stated that I was allowed to leave class five minutes early before lunch, and five minutes early at the end of the day, in order to avoid the ridiculously packed hallways of our high school. I was also allowed to leave class to go to the nurse’s office, which is where I went to use the bathroom. Jesus Christ did we abuse those privileges.
During high school, I never once went to the nurse’s office to use the bathroom, because that would mean the middle aged school nurse would have to handle my shwang, which in my mind was far worse than holding it all day. Besides, I can hold my pee like it’s my job. However, none of my teachers knew this, so when Becca and I got tired of sitting in class, I politely asked to be excused to the nurse’s office, and Becca would escort me because I said I needed her to come with me and nobody ever questioned that line of reasoning. Then we would walk around the school until we felt like we were pushing the limits of how long it should take me to pee.
Similarly, we often came up with ridiculous reasons for why I needed to leave earlier than five minutes before the end of class at the end of the day, such as, Shane has to get his jacket on, or the elevator is broken so we have to go outside and around the school to get downstairs, or Shane has to pick up something from the nurse. We could pretty much do whatever the fuck we wanted by involving the nurse’s office in our excuse. Teachers automatically believed any reason I needed to go to the nurse, which we’ll mark up as a plus for being disabled.
Spending literally all of our time together during high school, we inevitably had our fair share of arguments and fights. The arguments usually stemmed from two sources: Becca getting tired of constantly having to help me, and me being a sarcastic asshole and not knowing when to stop.
Considering I need help with almost every physical action in the classroom (getting my books and binders out, adjusting them on my lap, moving books that are out of reach, switching between laptop and book, etc), it was no small wonder that Becca sometimes got tired of helping me. Unfortunately, Becca’s method for dealing with being annoyed with me was to stop helping me altogether. So every once in a while we would get in a fight and I would be forced to sit in class not doing anything until she lightened up, which I always found really amusing, although my amusement at her anger didn’t help the situation at all.
Sometimes we would get into arguments while we were walking together in the hallway. Becca usually ended the argument by reaching down and pressing the power off button on my wheelchair, leaving me temporarily stranded while she continued on her merry way. I hated when she did this but it also made me laugh.
I think a large reason for many of our fights was my inability to take anything seriously. Most of our fights were petty and downright stupid, and I was often too aware that in a few days we would be best friends again, so I didn’t ever really get too angry with her. On the other hand, Becca occasionally made small arguments much bigger than they had to be, so our diametrically opposite methods for dealing with controversy sometimes led to a few days of pretending we hated each other. Understand that I can count the number of times a fight got this severe on one hand.
Moving on, another activity Becca and I often did together was attend MDA fundraising benefits with my dad, who has raised over $100,000 for the MDA in the past decade. These events were usually held in ballrooms, and consisted of socializing, followed by dinner, followed by a presentation of sorts, followed by dancing. I only ever went to these benefits because I felt like it was the right thing to do, since these people were trying to help cure my disease. If you read that sentence and thought, “Wow what a dick!” let me explain why I didn’t like MDA benefits. These events concentrated all the annoying aspects of having a disability and jammed them into one evening, including:
-People speaking to me like I’m six years old, “Heyyyy Shaaaaane, hoooow aaaaareeee youuuu todaaaay?”
-People being genuinely amazed that I was in all honors classes at a normal high school for normal students
-Having to pretend I like other kids with diseases just because we all have diseases
-People giving me tons of free shit because they feel sorry for me (I enjoy free shit, but I don’t like the initial feeling of receiving it from some old person who thinks they’re making my week.)
And worst of all:
-All of these events feature some kid with some form of muscular dystrophy getting up in front of everyone to perform some type of awful song or speech or dance for everyone. The audience always bawls their fucking eyes out and quietly murmur about how inspiring and talented the kid is, while Becca and I sit there and try our absolute hardest not to burst out laughing. Some of these performances are really, really terrible, but since the kid is in a wheelchair, it’s inspiring; I just don’t get it. I need to move on because if I explain my feelings about this situation, you will all end up hating me.
Anyway, Becca and I went to a bunch of these fundraisers over the years and got through them by joking about all of it with each other. To be fair, I have made some life-long friends with other people who fundraise for the MDA at these events.
Becca and I continued to grow closer as high school progressed. When Becca got her license, we began hanging out less frequently, because she did some activities with her other friends that were not practical for my SMA and I to be doing. By less frequently, I mean we chilled every other day instead of every day. We still spent a fuck ton of time together.
Our high school graduation was a really special time for both of our families, as we had a few family get-togethers where we shared some crazy stories from our high school career. I think it was around this time when we all kind of realized how uniquely special our relationship was. Becca and I grew up and became adults together. The people we are today have largely been influenced by all the time we’ve spent together over the past nine years. Saying goodbye to Becca whenever she goes back to college is one of the worst things I have to do.
We’ve been through a lot together, and we have laughed at every minute of it. Love you Beeb!
When I was younger, probably 13 or 14, I attended a weeklong summer camp for kids with Muscular Dystrophy. In an earlier post I mentioned that this camp is where I first developed a fear of feeding tubes, when a kid’s feeding tube in my cabin fucking erupted like a tiny volcano while he was sleeping one night. If it’s ok with all of you, I’d like to tell you about one more incident that took place at this camp that solidified my belief that I will never get along with other people in wheelchairs. There will also be some side stories sprinkled on top to make this story go down easier.
There was another kid 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 summer 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 made me have second thoughts about letting my parents leave me here for a whole fucking 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 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 fucking balloon! It won’t hurt if you stab each other! What are you guys even doing?” It’s kind of interesting to me that this small observation immediately made me dislike 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, but so did I, and I wore splints that held my feet straight during the day. Over my splints I wore normal shoes, so I was confused to say the least by everyone’s bare feet.
I’m going to do my best to describe my thought process as I began to make sense of the situation. 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. Growing up in a wheelchair, getting people to view me and treat me like a normal person was paramount. 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% 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, but I’m trying to give you a sense of how I analyze and interpret the world and the interactions I have with people. 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 all my luggage to my cabin, and to meet my personal counselor who would be playing the role of caregiver (which is a word I absolutely despise) 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 16ish, 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 doucher? 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 at the camp for the afternoon. This meant that all the counselors had to carry their respective camper into the pool so we could “swim.” Of course, 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, which my counselor thought was hilarious. 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 himself.
Later on, a female counselor I had become friends with was holding me in the water, and we were 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 the 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.
I kid you not, within 5 seconds I noticed Tim start to freak out underwater. His counselor must have noticed too, because he pulled him up for air right away. Whatever, fuck you Tim. 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.
This incident in the pool made me realize I was never going to get along with other people in wheelchairs, and I know it doesn’t really make sense, but I decided on that day that I prefer hanging out with people that can walk.
Luckily for me, the counselors at the camp soon realized I was slightly different from most of the other kids. We joked around and talked about things that they never would have discussed with the other campers. On the last night of camp, the counselors let me stay up all night with them, just chilling out and eating pizza while the other kids slept. For my 13-year-old mind, that was a pretty awesome experience, and it helped me learn that I had the ability and social skills to make genuine friends in a situation where they could have just been “pretend nice” to me because I was in a wheelchair.
It was about why I don’t like anyone I’ve ever met that uses a wheelchair. While it was funny, it was more of a “joking around with your friends” kind of funny, as opposed to “the entire world could read this, including the people you make fun of” kind of funny. I saved it and might come back to it eventually, but for now I switched gears and am writing a post about how terribly terrible it is when I get sick. It probs won’t be done tonight though because I’m exhausted from physical therapy (just writing this message took 10 minutes because I keep having to stop to rest my hands). Sooooooo I will get it done tomorrow and post it tomorrow night.
In the meantime, why don’t you check out some of my older posts if you’re new to my blog?!
My first experience with alcohol, or getting drunk I should say, is by no means exciting or dramatic, but considering the fact that I weigh as much as the average seven-year-old, the story can at least be described as interesting.
It was New Year’s Eve and I was 18 years old. My best friend and cousin, Becca, was on winter break from Pitt, and we were trying to spend as much time together as possible since we wouldn’t see each other again until after the spring semester. We decided that we were going to spend New Year’s Eve together, and attempt to get me shwasted 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.
You see, my disease makes drinking, or participating in any illegal or 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 have a justified reason to not want me drinking; it’s 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, mind 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 shitty part about this plan is that sleeping over at other people’s houses is kind of not very comfortable for me. Unless my brother is with me, I usually sleep in my chair so that I don’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 does have a recline feature, but it is far from desired. Also, I can’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 wish 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 10pm 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 other friend 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.
However, we didn’t quite plan the whole night out as much as we should have. Around 3am, 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 literally sat there and played games on my phone until it died. That was around 4:30am. 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 7am. 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.
When I was in 11th grade, I signed up for dual-enrollment classes at the local community college. I had to take two placement tests, reading and writing, before they would let me sign up for Intro to Psychology, and I was very nervous because these were COLLEGE placement tests and I was only in 11th grade. I went to take the tests, and was awe-struck by how easy they were.
Here is a sample question from the test:
Which sentence uses a period correctly?
A. I. Like. To. Eat. Pizza…
B. I like to eat pizza.
C. Pick B
D. Seriously, B is the correct answer and you should pick it.
I finished the tests and printed out the results; I got a 100% on the writing and a 98% on the reading because the story about salmon migration patterns made me want to break the testing computer with my face.
Then, I had to take the test results to an old woman at her desk on the other side of the room so she could review my scores and tell me if I could sign up for the class I wanted. I drove over and awkwardly handed her the paper because I can’t really hand people things; I just kind of push them off my lap. She took it and said to me as if I was a toddler that had just used an adult toilet for the first time, “Ok honey let’s see how you did.”
Her face instantly changed to astonishment and she literally said, “WOW, I didn’t expect this!”
“Uhh what?” was my reply. Was she joking? The salmon I read about could have passed those tests.
Then she realized how rude she had sounded and quickly added, “We just don’t usually get scores like this! Congratulations!” Again, it felt like she was congratulating me for pooping by myself.
I know my body looks fucked up, but I honestly feel like there is no physical indication that would lead people to think I’m mentally challenged, and scenarios like the above are funny, but incredibly annoying.
If I ever get famous I am going to try to change the assumptions most people have about people in wheelchairs.