How ironic would it be if I died tonight after posting earlier about how healthy I am?
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.
For this week’s Motivational Monday we’re going to switch things up a little bit and feature a new story written by the co-founder of LAMN, Inc. - Shane Burcaw. We hope you enjoy it and that his story gives you some motivation today!
Here We Go Again by Shane Burcaw
It started with a peanut. Actually, not even an entire peanut, if it matters. It does. Everything matters.
It started with an almost microscopic fraction of a half-chewed peanut. There we go.
Is Shane allergic to peanuts? No, I’m not. But last week I had an experience with a peanut that ultimately left me curled up in bed, cuddled under mounds of blankets, feverish, and reduced to a sobbing, snotty puddle of life-questioning tears.
Becca was home on fall break, so naturally I spent every waking hour at her house that weekend. Here is literally and exactly what we do when Becca comes home from college with zero distortion of the truth for comedic effect: 1. Eat junk while 2. Watching Teen Mom, and 3. Making fun of each other. My cheek muscles burn from laughing after a weekend spent in Becca’s basement.
On Friday night, Becca’s mom made a glorious announcement from upstairs that she had ice cream and would we like some. Of course we would like some. Not just some… all. Thus our routine described above continued, now with a bowl of rocky road ice cream in each of our laps to go with the sour cream and onion potato chips we had been previously inhaling. To my slight dismay, the rocky road was infused with probably millions of tidbits of peanut, which made chewing each bite with my atrophied jaw muscles somewhat challenging. But ice cream is delicious so I was not about to hand over my bowl to Becca because of a few nuts. Perhaps I should have.
Halfway through the bowl, Becca said something funny enough to make me temporarily forget I had food in my mouth. Somehow in the awkwardness of uncontrollable laughter, while trying not to spew a mouthful of peanut slobber on my lap, I inhaled a little too carelessly and that tiny piece of stupid peanut I mentioned earlier shot right down my windpipe. Coughing began immediately. Not self-generated coughs, but the kind that I couldn’t stop from happening. The ones that are our body’s way of saying, “I prefer having oxygen, so unless you’d rather choke to death and die, I’m going to make you cough very hard until I can breathe again.”
You have to understand that my ability to produce any type of force with a cough is nonexistent. I have the lung capacity of a baby made of tin foil (they have terrible lung capacity, trust me). So as hard as my failing body tried, the stubborn peanut chunk remained lodged in my air tube. After several minutes of probably appearing like I was about to die, I was able to jostle the peanut into a position where it no longer impeded my airflow. The involuntary hacking subsided, as did the stream of involuntary tears, but the peanut was still very obviously in my windpipe. I spent the next half hour trying to force more powerful coughs to bring the peanut up into my throat so I could swallow it. Even though I could breathe, a foreign substance in my lungs spells extremely bad news for me. If I couldn’t get it out, the peanut would sink further down and almost certainly turn into pneumonia.
I coughed myself to the brink of exhaustion. The peanut wasn’t moving and I no longer had the energy to care. I could breathe fine. “Maybe it already came up and you’re just imaging it now,” I tried to persuade myself to calm my flushing cheeks that knew I was not going to be ok.
I returned to my now melted ice cream and made sure to pick out the peanuts as I slopped the chocolate liquid into my mouth. Our conversation resumed, now sprinkled with occasional renditions by Becca of my pathetic coughs. A few hours later I went home. The peanut must’ve slid deeper into my lungs, as expected, because I no longer felt it in my windpipe, and by morning I had completely forgotten the lung peanut even existed.
Saturday and Sunday saw Becca and I doing a lot more of the same thing we did on Friday night. We joked and laughed, and ate, and lounged, and played with Becca’s new iPhone. On Monday, however, while Becca was on an early morning bus ride back to Pittsburgh, I awoke with a cold numbness in my hands and feet. Odd. Especially considering the heavy blankets I slept under.
I sat in the living room and sipped my coffee slowly, savoring the warmth of the mug against the palms of my hands. SportsCenter told me that it was going to be another disappointing week in fantasy football, but I hardly cared. My mind was preoccupied by a tiny pinch felt just below the skin on the right side of my chest on every inhalation. The peanut.
Suddenly my cold hands and feet (and nose, I realized) made sense. I was getting sick.
Alarms sounded. My breathing became shallow and just rapid enough to hide my panic. Maybe if I don’t take deep breaths the lung pain will go away. Maybe I just slept on it wrong. Maybe the house is just unusually cold. “Is anyone else freezing right now?” Maybe I’m just having a weird morning. That happens right? Bodies do weird things; it doesn’t mean I’m sick. But that peanut definitely never came out. How long does it take for a bacterial infection to start? Why does this have to happen now? Why didn’t I try harder to cough it up? What if this is the last sickness?
The idea of the “last sickness” is one that constantly follows me, but makes itself more known in the winter months, especially when I begin to feel ill. Eventually, I’m going to get sick, it will spread to my lungs, and my SMA ravaged body won’t be able to fight it off. Knowing that every illness could be my last makes every illness all the more terrifying.
With all this in mind, I sent a text to one of my closest friends and told her about what had happened. When I start to get scared about dying, talking to someone is the best way for me to calm myself and make sense of things. She advised me to go to the hospital, to which I replied no because hospitals are where people go to die. Maybe I just needed some rest.
I spent the afternoon in bed, huddled under a sheet, two blankets, and a quilt. Still shivering, and desperate. I wrestled with many complex thoughts that afternoon, but for the most part grappled with the question “why me?” I cried silently because clearly I will never find the answer to that question. The fear of ceasing to exist took complete control over me that day. The world will someday go on without me. Lying there in tears, sweat and mucous, I came to terms with the fact that I might not have as long as I’m constantly telling myself. Eventually though, I couldn’t resist letting myself laugh as I reflected on the absurdity of the entire situation.
From this laughter came deep sleep.
When I awoke it was morning. Consciously, I made my lungs inhale deeply. No pain. My heart started to make its steady rhythm felt in my bones and throughout my skull. Several more deep breaths. Still no pain. Someone had removed most of my covers, and to my confusion, I was no longer cold. A frantic glance around the room confirmed that this was indeed reality and not a dream. A sigh of unimaginable relief escaped my chest and ended with massive smile. I’m alive. Not only am I alive, but it seems as if I’m not sick. Did I get lucky? Was it a one-day bug? Did I amplify my symptoms with the knowledge of the peanut?
Regardless of the true explanation for my healing, that massive smile would not disappear. For the next half hour I did nothing but lie on my back, smiling at my ceiling and the sky above, enjoying the freedom of deep breaths and the wonder of having another day to live. Another day to laugh. Another day to procrastinate on homework. Another day to interact with the world and the people in it. Another day to learn. Another day to make mistakes. Another day to admit that my fantasy football team is awful. Another day to make my time on earth as meaningful as humanly possible. Another day to breathe. Another day to breathe. Another day to breathe.
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.
There is never a dull moment in the Burcaw household, and this afternoon was a perfect example of that.
My friend Lily (lilygnilu.tumblr.com) and I hung out at my house today. We spent most of the afternoon working on nonprofit activities, but eventually the beautiful day persuaded us to go outside. As we made our way to the patio in my backyard, we heard a loud, rapid flapping noise coming from above.
My mom loves birds. Our backyard is filled with birdhouses, birdbaths, bird feeders, and lots of birds, but this flapping noise was louder and more annoying than the usual chorus of obnoxious bird noises that normally fill the backyard. We quickly located the source of the noise. Below one of the wooden birdhouses near the roof of our deck, in a tangled mess of ivy, was a puffball of feathers in complete spazz mode.
Lily cautiously approached. Even though the psychotic bird was a solid 3 feet above her head, she clearly feared that it was going to burst out of the ivy and peck her to pieces at any moment.
“Oh no! It’s stuck!” Lily yelled in horror, “What do we do?”
Upon closer inspection, she discovered the bird’s foot was caught in some plastic that was also caught on the ivy branch. It was decided that we obviously couldn’t just leave the bird hanging upside down where it would die a slow and lonely death. We had to rescue it.
It’s important to understand the conflict of this situation. Lily desperately wanted to save this bird’s life, but at the same time, touching the bird, or even getting too close was overwhelmingly scary. Her initial reaction was to climb onto the railing of our deck (which sits about 8 feet off the ground), but before she was able to stand all the way up, I convinced her to get down. If the bird would’ve spazzed while she was balancing on the railing, she definitely would’ve fallen to her death and this post would be way less fun to write.
I told her to grab a stepping stool, a box, and scissors from inside the house. While she was inside gathering supplies I realized it was probably good that we were the only two home. My brother would’ve handled this situation with a baseball bat, and it would not have been pretty.
Lily returned with the supplies and set up the stepping stool to better assess the situation. While she was carefully and fearfully surveying the damage, my cat jumped up on the railing and began trying to climb the wooden post up to the birdhouse. I hope she doesn’t get mad at me for saying this, but Lily basically lost self-control at this point. There was lots of shrieking and all I heard was “OHMYGODIDONTKNOWHOWTOHANDLETHISWHATDOIDOHELPMESHANEAHHHH!”
Somehow she was able to pull it together and found the strength to grab Oreo (my cat) and put her inside. Lily was on the verge of tears. I was sitting down below, laughing hysterically, but trying to be as sensitive as possible. It was funny, but I also didn’t want the bird to die.
After she had calmed down, Lily and I devised a plan to cut the branches around the bird so that it would fall into the shoebox that she would be holding below. Amazingly, the plan worked to perfection. It is worth noting (if it’s not obvious) that Lily carried out the plan completely on her own. She had to balance on the stepping stool, while cutting the branches with scissors in her one hand, and holding the shoebox for the bird to fall into in the other hand. It was rather spectacular.
Now the bird was in the shoebox, but still far from being rescued. It flopped around in the box, getting blood (not sure where the blood came from) and poop everywhere, its foot still firmly bound to the branch that Lily had cut loose.
For the next half-hour we tried to figure out how to free the bird from the plastic without Lily having to touch it. She called her mom seeking guidance, but the first thing her mom said was, “DO NOT bring that bird home.”
Lily was too emotionally, physically, and mentally spent to perform the necessary task on her own. So we called Pat, who was in the process of buying a suit for prom:
Lily: “Hey Pat, I’m with Shane and we have an emergency. We have a bird in a box and its leg is caught in plastic and it’s going to die.”
Pat: “That’s not an emergency.”
Lily: “Well it is to us. We need you to come to Shane’s as soon as possible. I know you are buying a suit, so don’t rush, but you have a life on your hands now, so the faster the better.”
Pat: “*laughs* Ok I will be there as fast as I can. It’s going to be at least a half hour though.”
The next half-hour was packed with emotion. We named our bird Benigna. We told her stories and asked her questions and talked about life and death. We wanted her to feel loved in case Pat didn’t make it on time or something went wrong in the plastic removal procedure. There were laughs. There were tears. Meanwhile, I secretly researched the best way to euthanize a bird on my phone, just in case.
Benigna was a fighter, though. She was alert and calm when Pat showed up to save the day. I immediately began to prepare Pat for surgery, filling him in on what had happened (trying not to laugh too hard) and explaining what had to be done.
Pat basically ignored the plan I had laid out for him, which involved him subduing Benigna, while Lily delicately cut away the plastic with the scissors. Instead, he grabbed the bird with his right hand, and started to gently loosen the plastic with his left. He was so graceful and compassionate that I wondered if he had done this many times before.
It might have taken him a total of two minutes to free Benigna, if you subtract the time where she jumped out of his hands and hid under a bush. We cheered as he removed the last of the plastic and Benigna fluttered over to my mom’s garden to recover (hopefully lol). Relief washed over us. Mission accomplished. Life saved.
Had there been an audience, the three of us would have received a standing ovation.
The gem I just dropped
Would make any woman say,
“He went to Jared”
I posted some bathroom humor earlier tonight, COMPLETELY forgetting that I decided last week start a new weekly post called “Toilet Haiku Tuesday!”
From now on, every Tuesday I will reblog the haipoo that made me laugh the most from the previous week. Make sure you submit your best haipoos to toilethaikus.tumblr.com for a chance to have your poem featured!
My insurance company will cover a new wheelchair every six years. I’m guessing they didn’t just pull that number out of thin air—although it wouldn’t surprise me—but I’m sure there was some research that found a wheelchair’s life expectancy to be about six years. Imagine if that was your job: find out how much damage this wheelchair can take before it falls to pieces. I want that job. But I digress…
I’ve been using the wheelchair I currently have since eighth grade, approximately 6-7 years. For the past few weeks, my parents, as well as my physical therapist, have been nudging me to start the process of getting a new one. Believe it or not, I really don’t like changing wheelchairs. I pretty much hate it. But when I tell people this, it usually takes them some time to understand where I’m coming from. I say the word “new” but they hear the word “better.” However, new is not always better when it comes to a seating arrangement that is such a crucial aspect of my everyday life.
I’m not a bratty 7-year-old though, I realize my chair is getting old and starting to break down more often, and I understand how extraordinarily fucked I’d be if my chair broke permanently before I had a new one. So this past Monday night, we met with someone from the wheelchair company to start the arduous process of getting me a new whip.
There are many reasons that I am so against changing wheelchairs. I’ve come to understand that many of the reasons are difficult to comprehend for the average able-bodied person, and that is the biggest problem; the able-bodied people who assist in the wheelchair selection and customization process have trouble understanding the intricacies of how I sit.
For instance, last time I got a new wheelchair, a big point of contention was the fact that I lean so far to the right and put almost all my body weight on my right rib cage. It’s a completely acceptable thing for the therapists and wheelchair representatives to be concerned about. However, and this is a big however, I physically can’t hold my head up or move my arms if my body is adjusted even several inches to the left. When I explained this to them back when I was 13, they essentially ignored me and played the “We’re specialists so we know better than you” card. It was extremely frustrating, as they lifted me from one chair to the next, while I knew just by looking at each chair that it wasn’t going to work.
They always said things like, “Well maybe if we reclined the chair your body would naturally rest on the backrest rather than your side. Or maybe we should look into a head strap that will hold your head in place since you can’t hold it up when you’re in the proper position.”
I responded, “But I would literally have to be almost fully reclined all the time, and I can’t drive that way, so that wouldn’t work. Also, I definitely do not want a head strap.”
Then came their line that filled me with so much anger that my eyes used to tear up, “Well Shane, we might just have to compromise on this one.”
It felt like they were ignoring everything I said, and to be told that I was going to have to wear a head strap from then on, with no say in the decision, was more belittling than you can imagine.
Similar arguments took place for many aspects of my wheelchair, not just the side support, so you can begin to see how I’ve grown to hate the process so much. The fact is, the specialists were usually wrong. They’ve been telling me since I was four that I’m going to get skin breakdown from leaning on my right elbow all day, and that we should look into a bunch of different methods to take pressure off my elbow, methods that would render my right arm unusable. Every six years I fight them off and somehow convince them that my elbow will be fine. Almost 20 years of leaning on my right elbow have gone by, and guess what, not once have I had any breakdown of the skin.
My wheelchair and all of my quirky positions work for me. I’d prefer not to change that.
With all that being said, this past Monday night went very smoothly. Maybe it’s because I’m over 18 now, maybe I was better able to explain my circumstances this time around, but the wheelchair specialist and my physical therapist both seemed to understand that I want to keep as much the same as possible. We’re ordering the newer model of the same chair, and we’re basically just going to re-create the seating position I currently use. It was a giant relief.
Now for the fun part! With a new wheelchair on the way (a process that will take 4-5 months… stupid insurance) I feel like the proper thing to do is take some time to honor the valiant life of my soon-to-be old wheelchair. We’ve been through a lot together… some fun, some shit, but all worth remembering. So I’ve decided to write a letter to my wheelchair to let her know how I really feel.
The time has come to say goodbye. But before you go, let’s reminisce about all the memories we’ve shared.
There were the countless feet that we have run over together. Most of the time it was an accident, but sometimes we did it on purpose and disguised it as an accident. Other times we ran over feet because people asked us to, not in a fetishy kind of way, more of a, “Run over my foot I want to see if it hur… OH GOD GET OFF GET OFF!”
There was the time we stayed outside in the summer downpour against all reasonable logic, and you broke down for three fucking days. I had to sit in a very old, very uncomfortable, manual wheelchair while you were being repaired. Andrew parked me in the corner and told me I was in timeout probably 100 times during those three days. Without instant Netflix, I probably would have died.
There was the time we were in the car together, not strapped in because we like to live on the edge, and when mom had to slam on the brakes, you rocketed towards the front of the van, since I had also forgotten to turn you off, breaking my big toe as we collided with the drivers seat. It was a learning experience though, we still don’t strap you in, but I at least remember to turn you off.
There was the time you threw me out of the safety of your seat when I ran over a soccer ball with you. The broken femur I suffered put me out of commission for a month. I still kind of hate you for that, but forgiveness is a process.
There were all the times we were an awesome street hockey goalie. Your 450 lbs of steel and brute force, combined with my cat-like reflexes and determination to win made quite an impressive team.
There was the time our road froze over and we had drift races until my entire body was frozen solid.
There were all the times when I used you as an excuse to get out of class early throughout high school. I think teachers are programmed to just say yes whenever someone in a wheelchair asks to do anything. “Mrs. Smith, can I be excused from class now to beat the crowd?”
“Shane, there are 20 minutes left in class.”
“Yeah but my wheelchair…”
“OH OH I’m sorry, yes, go right ahead. Do whatever you have to do. Here are the answers to tomorrow’s test.”
There was the time I missed the birth of my first-born son because I forgot to charge you the night before.
There was the time I burned holes in your controller interface because I wasn’t paying attention while playing with fire.
We have traveled hundreds of miles together. We went through puberty together. We made friends together. We experienced life together. I can never thank you enough for all that you’ve done for me. You will never be replaced. You will never be forgotten.
Unless, of course, my new chair is a lot cooler.
“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).