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.
I plan on having kids someday.
It is completely appropriate for you to be uneasy about that statement. You might have some questions. Shane is going to have kids? How would that work? With who? Can he have sex? Would his children be mutants? SMA didn’t make his penis fall off? I thought he had the body of a goat from the waist down?
On a purely physical level, I am perfectly capable of having sex. I get boners and my boners shoot sperm, so having kids is a real option.
(Hi mom and dad and rest of the family! Aren’t you guys glad you read my blog?)
I asked my friends for their immediate reactions to my declaration about having kids. Many of them responded with jokes, but all of their minds went straight to the sexual aspect of the matter. (Side note: Pat replied, “No. We don’t need any more people taking up the handicap parking spaces in this world.” Side note 2: Unless my baby momma is also a carrier of the SMA gene, my kids will not have the disease.)
Anyway, all of my friends basically asked, “How is the sex part going to happen?”
I can’t blame them, but when I think about possibly making new humans someday, I don’t give much thought to the logistics of putting the cookies in the oven, if you will. Rather, I believe the biggest obstacle standing between fatherhood and me is the responsibility of being a parent. How will I take care of my child? How will I hold it? How will I change its diapers? How will I feed it? Teach it things? Protect it? Nurture it?
One can logically assume that the mother will have to take on more responsibility for the child, but what if she is also the one that has to take care of me? With all the physical assistance I need, I’m really nothing more than a large, intelligent baby (that gets boners). What kind of girl wants the pressure of keeping me and another baby alive? These are serious questions that I still do not have the answers to. Someday I will have to answer them. However, since I’m only 20 years old, I have time to think them over. In the meantime, here is a hypothetical exploration of how I might handle taking care of my first child. For the sake of comedy, let’s assume that I am the only one caring for the baby.
To start, I should probably give this kid a name, because I might throw up if I have to refer to it indirectly this entire time. Besides, choosing a child’s name is one of the most important decisions parents have to make. Your name stays with you for life, and if the ideas in my head are any indication, this kid is going to have a pretty shitty upbringing, so I need to pick a good name that isn’t going to bring it more shit down the road from douche bags on the playground.
Oracle. Little baby Oracle Burcaw.
I chose Oracle because it’s gender neutral, and I didn’t want to risk half of you unfollowing me for choosing not your gender, but also because no one fucks with a kid named Oracle. That would just be asking for trouble. (I will refer to Oracle as a “she” though. It’s just easier. Feel free to imagine my hypothetical baby as whatever gender pleases your heart.)
Ok, baby Oracle. You ready?
I’m assuming Oracle is going to need food at some point throughout her childhood. Babies start off by breastfeeding for a while, so I need to figure out a way to get nutrients into Oracle, because last time I checked, sucking my nipples does not produce milk.
But Shane, lots of parents don’t breast feed. All you need to do is give her formula in a bottle. That’s true, but the whole idea of warm formula kind of grosses me out, so I’m going to go ahead and not do that. Plus, if I’m the one holding the bottle to her mouth, Oracle will end up wearing more formula than she drinks.
Luckily, over the past year I’ve become highly adept at the art of nasal feeding tube insertion. I jam a yellow tube up my nose every fucking night. A majority of my daily nutrition is pumped into my stomach while I sleep; I don’t see any reason why I can’t do the same with Oracle. It will be great. Whenever Oracle starts to hunger cry, I’ll slip the tube up her nose and she’ll be full in no time! I’m guessing this method will also cut down on the number of times I’ll have to feed her, because I can’t imagine that she is going to enjoy the feeding tube very much. It will be like a Pavlov experiment. Crying equals painful tube up the nose. She’ll quickly learn to only cry when she’s legitimately hungry.
After she’s done feeding, I will have to burp her. I already see several problems arising. First of all, I can produce about as much force as a gentle breeze with my chicken finger arms, so I won’t be able to smack the burps out of her like normal parents do. Second, I refuse to put myself in any situation where there is even a slight possibility of getting baby vomit on myself.
I think the best way to handle this situation will be to burp Oracle the same way I crack my brother’s back: with the wheels of my wheelchair. Whenever Andrew needs his back cracked or massaged, he lays on his side on the floor, usually face first against a wall. Then, using the 400 pounds of force produced by my wheelchair, I “massage” my front wheels into different spots on his back. I will burp Oracle the same way. When she starts to look a little bloated, I’ll just drop her on the floor (gently!), wait until she crawls near a wall, then wheel-smash away. Don’t worry; I have great control over my wheels. As long as Oracle is smart enough to let me know when she’s in pain, pushing my wheelchair into her back will be just as safe as normal burping techniques.
Babies inevitably throw up, regardless of the burping methods they are submitted to, and since a puke-covered infant is not something I want in my house, I will have to find a way to safely give Oracle a bath. I won’t be able to hold her in the sink. I can barely lift my iPhone; forget lifting a baby. I suppose I could let her crawl outside with the lawn sprinklers on, but something tells me I will have a difficult time getting her back inside. Also, using lawn sprinklers for baby baths is a waste of water. When push comes to shove, I’d rather have a smelly Oracle than a ridiculous water bill. Probably my best bet will be to fill up a kiddie pool in my living room and give Oracle the freedom to bathe as often as she wishes. It will teach independence, responsibility, and water safety (as I’m sure it will take her a few days to learn that she can’t breathe underwater).
Shit, how will I change her diapers?
Simple. I just won’t change them. Ever. Problem solved.
These are just the first few parenting responsibilities that came to mind, but as you can see, I’m clearly a professional problem solver, so I doubt that I’ll have trouble coming up with solutions for additional dilemmas that I’m likely to face. Life won’t be easy for Oracle. She’s going to be born into an—admittedly cruel—environment with all the cards stacked against her. But I firmly believe she’ll make it out just fine, perhaps better than her other baby peers. If nothing else, Oracle will learn a very valuable lesson; nothing that is good in life is easy. You have to work hard and earn what you deserve, even if that means living in incredible filth while constantly fearing that your father is trying to wheelchair-burp you.
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.
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.
As you may or may not know, Jesse, Jon, Pat, and I went to the USA Women’s soccer game vs China in Philly (technically Chester but close enough) on Sunday. The idea for this trip came about after you guys helped me get Alex Morgan’s attention on Twitter. Unfortunately, I never heard back from her after the initial tweet she sent me saying she wanted LAMN, Inc. wristbands for the whole team. Refusing to give up, I bought 4 tickets for the game and we started brainstorming plans to get her the wristbands at the game.
These plans included: Jesse dressing up as a janitor so he could push me into the locker room disguised as a garbage bag, parachuting into the stadium during the game and hand delivering the wristbands to Alex, and our last plan involved me driving onto the field naked, covered only by a pile of wristbands. After we came to terms with reality we decided to have Sarah make us a beautiful sign that would get Alex’s attention. We also planned on screaming at her a lot… in a nice way. Surely she would come over afterwards and take the wristbands.
The hour and a half drive to Philly was spent discussing how to properly handle the potential gravity of the situation if Alex did indeed come over to our section.
When we arrived at the stadium and made our way to our seats, a very friendly usher told us that all the handicapped seats had been moved to the top level of the stadium for this game. Our faces must’ve revealed the crushing disbelief we all suddenly felt because the usher asked if we thought he was joking. At first, I thought he was. The handicap seats at PPL Park are literally front row, about 10 feet from the field. Those seats were a very crucial part in our plan to get Alex’s attention.
The usher was not joking, so we begrudgingly made our way to the top of the stadium.
This is where we were sitting:
With a half hour until game time we sat up in Northern Bumblefuck and debated the next course of action. Suddenly Jesse stood up, announced he had a plan, and left us. A few minutes later we saw him talking to another usher down below where we were originally supposed to be sitting. After that he disappeared from our eyesight for about 20 minutes. Just as we were coming to terms with our Alex plan being a failure, Jesse came back to our seats, literally dancing, saying that we should never doubt him. He waved a piece of paper in my face and announced that he was successful. I’m not going to tell you all the details because there are people out there who might frown upon them, but I will tell you that Jesse did something so brilliant we were praising him for the rest of the night.
This is where we ended up watching the game from:
It was amazing. The US destroyed China 4-1. Go USA!
After the game, when the team stood in the middle of the field to thank the fans, there was a solid 30 seconds when Alex was looking directly at our sign and us screaming and waving at her. The jury is still out among the four of us about whether or not we saw her laugh at us, but that is beside the point. Alex did not come over to us, and I honestly don’t blame her. She probably did not see any of my follow-up tweets, which would explain why I never heard back from her and she did not come talk to us. It was a little depressing, but at the same time I was probably dumb to think everything could have worked out so perfectly.
HOWEVER, and I capitalized it because it’s very important, Megan Rapinoe, who is another well-known player on the team, started to make her way from the center of the field directly towards the four of us. We panicked like a bunch of pre-teens at a Justin Bieber concert, but gathered ourselves when she came up to us. She held out a marker and asked if we wanted anything autographed, which was not at all what we were expecting, so we momentarily became the four most awkward people in the stadium. Jon recovered first and held up the bag of wristbands we had prepared. He explained the whole Alex Morgan Twitter situation and asked if she would mind giving the bag to Alex. Megan graciously accepted and we bombarded her with thank you’s. Pat held out his flip-flop for her to sign. Megan ended up putting the bag down the back of her shorts, which only made the situation 1000 times better.
In the bag was a note that I had addressed to Alex. It explained the nonprofit and thanked her again for accepting the wristbands. I also gave her my cell phone number and e-mail, because you’re not going to NOT give Alex Morgan your number when given the opportunity.
I still haven’t heard anything from the team, but all in all, I believe that Sunday night was a very entertaining success.
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.
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.
Almost a year ago, during a boring day near the end of May, I had the random idea of starting a blog about my life.
Most of my friends were either still at college, or already on vacation, so I was spending the start of my summer doing a whole lot of nothing. On that boring day, while reclined in my wheelchair in the backyard—trying to get tan—I decided it might be fun to write a story about the time I fell out of my wheelchair and broke my femur. At first I was hesitant. Posting stories about my life on the Internet seemed conceited and egotistical; my friends and I make fun of people that use their disability to gain attention, but that wasn’t my intention.
Throughout my life (I was 19 years old and just completed my freshman year of college on that boring day in May) I had learned that people get a huge kick out of jokes I make about my disability. I’ve always enjoyed making fun of the awkwardness, weirdness, and uniqueness of living with Spinal Muscular Atrophy, but my audience was typically limited to my group of friends and my family. For some reason that I don’t think I’ll ever fully understand, I felt an urge to make more people laugh at my disease as I sat in my yard getting burnt.
As I began to type my broken femur story, it slowly dawned on me how much material I had to write about. I stopped writing to do a quick Google search for other blogs that were similar to what I was suddenly imagining in my head: a humorous take on a very serious disease. There were no results. The excitement started to build as I finished the femur story, wrote a brief introduction to my life, and posted both on my newly created Tumblr page: Laughing At My Nightmare!
The following is my attempt to recount all the life-changing experiences that have taken place since I first pressed the post button almost a year ago.
At first nothing happened. I kept the blog a secret from my family and friends, mostly because I talk about dying in my first post—something I had never discussed with anyone out of fear that it would create permanent awkwardness in the way that people thought about me. I also felt like I had a lot more freedom writing with anonymity. Throughout June I privately messaged countless Tumblr users, asking them to check out my stories. I honestly just needed some validation for all the effort I had put into the stories that I had posted. Slowly, my number of followers started to climb.
I reached my 1000th follower on July 7th. I couldn’t believe what was happening; I had stopped messaging people long ago, which meant that people were finding my blog on their own. Stories I wrote were making people laugh… it was nuts. Fan mail was clogging up my e-mail faster than I could respond to it. One of my friends sent me a message on Facebook saying that he had found my blog on stumbleupon.com and that he really enjoyed it. Suddenly I realized I was not going to be able to hide this from my friends and family much longer. I was still extremely nervous about telling them—my story topics now included sex, my questions about God, and more about my fear of dying—but I decided that any awkwardness that might result from me telling them was not worth the effort I was going through to keep it a secret.
I told my brother a few days later and his response was, “If you need any pictures of my penis, just ask any girl at school.” Excellent. That was my brother’s way of saying he supported me. I waited until the following week when we were on vacation in Ocean City, Maryland to tell my parents. My heart was pounding and my hands were sweating as I told them all about what I was doing at dinner on the boardwalk one night. They were more blown away by the several thousand followers I now had than concerned about the subject material I wrote about. No awkwardness at all. Their supportive reaction was such a relief that I posted my blog on my Facebook that night for my friends to see.
A publishing company contacted me about submitting a book proposal. My blog was starting to take on a life of its own, growing exponentially. I was enjoying life more than I ever had before.
In August, several newspapers and online news websites contacted me about doing stories. I reached a point where everything started to feel unbelievable. Three months ago I posted a dumb little story about breaking my femur, and now people wanted to write stories about my inspirational message.
The best moment of my life started with an e-mail that I received on August 30th. It was from Anthony Green, lead singer of the band Circa Survive. Anthony and the music he makes with Circa has always been one of the biggest inspirations in my life. His e-mail said that he had been changed by the words in my blog and that he wanted to meet me if I was able to make it out to show. Two months later, my friends Becca, Jesse, and I were sitting backstage at a Circa Survive show in Philadelphia, hanging out with Anthony Green. The three of us agree: that moment will forever be one of the greatest moments in all of our lives.
I went through some difficult times in September, being forced by my low body weight to get a feeding tube, which meant a week-long stay in a hospital in Delaware, two hours from my house. I spent a lot of that week documenting the experience on Tumblr, which helped me remain positive and see the humor in my situation.
My blog was a source for entertainment, but I realized I now had the opportunity to make a real impact on the world. In January, I started a nonprofit organization, called Laughing At My Nightmare, Inc., with a group of awesome individuals. Our mission is to raise money for muscular dystrophy research and spread a message of positivity and appreciation of life.
Another memorable experience took place in February. My friend Pat and I were in the grocery store and an old woman approached us, looked at Pat, and said, “Andrew, right?” We both reacted with confusion. She continued, “You are his brother, from the blog, right? I saw what you are doing (talking to me now) and I think it’s really amazing!” No way. I was just recognized in public by a complete stranger, (well, technically Pat was mistakenly recognized for Andrew) but you get the idea.
I continued to write stories as often as possible throughout the spring semester. My followers climbed over 50,000, and our nonprofit had its first official board meeting, which for me symbolized that we were on our way to making a real difference in the world.
Throughout the past year Tumblr has completely changed my life. Before I started my blog, I was a normal, lazy college student with no idea what I wanted to do with my life. I thought a lot about my disease that was slowly destroying my body, but never shared my thoughts with anyone. Now, I have goals for my life. I want to continue to expand the reach of my blog, and I plan on making Laughing At My Nightmare, Inc. a nationally recognized nonprofit. I’m able to talk openly with people about my disease and the fact that it will eventually kill me.
When I started my blog I wrote that I would probably be dead before I turned 30. I was being complacent. I’ve decided during the craziness of the past year that life is too beautiful to give in so easily. I’m not going down without a hell of a fight, and I’ll be bringing you guys with me every step of the way.
“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).
Yesterday was just a normal day… sort of. Although I’m on winter break, my dad woke me up at 6 AM and helped me get ready for the day, which included putting on sweatpants and a T-shirt, and handing me a cup of coffee with a pink bendy straw. I sat in my living room, mindlessly staring at ESPN, enjoying my coffee, but yearning to be back in the cozy warmth of my bed. If you remember one of my earlier stories, you know that my sleep schedule is very much dependent on the lives of my family members. On this day, both my parents had to leave for work by 7:30 AM, along with my brother, who left at the same time for high school. Angry is not the right word to describe how I feel about having to live this way, more like reluctantly accepting. It is what it is.
This story really has nothing to do with my sleep schedule, but I want you to understand that yesterday was just like any other day; I woke up early, my family left, and I was home alone until about lunch time when my cousin Sarah came over to hang out.
However, one tiny factor made yesterday a little bit different from most other days, and it ended up causing something pretty ridiculous to happen.
I decided not to do my feeding tube the night beforehand because I hadn’t been feeling too well and the idea of a tube tickling the back of my throat all night was not as enticing as it usually is. Skipping my overnight feed (I’m a vampire) is not a big deal. I usually take one night off each week to give my repeatedly assaulted nasal cavity a break.
Over the past few months, I have discovered an unusual side effect that occasionally occurs the day after I choose not to do my feeding tube. Once again, unusual is probably not the right word, more like extremely unhealthy and frightening. Here is what happens: At some point during the day after I’ve skipped a feed, there comes a point when, seemingly out of nowhere, my body is overwhelmed with an incredible feeling of hunger. Not your typical “I missed lunch, now it’s dinner time, so I’m going to eat a lot,” type of hunger. No, this is far scarier than that. In a matter of a few minutes my entire body becomes extremely hot, basically feverish, and begins to sweat. From my toes to my head, I literally feel drips of sweat soaking into my clothing… its rather disgusting. Then, my whole body starts to tingle, like the feeling you get when a numb body part regains feeling, except everywhere. All of these alarming symptoms that spring up out of nowhere are centered in a dull, achy feeling of nothingness in my stomach.
The first time this happened was the day after I skipped my feeding tube for the first time. It was midmorning and I hadn’t eaten breakfast yet, and when the symptoms started, I honestly thought I was having a heart attack. I probably would have freaked out a tiny bit had it not been so obvious that this reaction was a result of the intense feeling of hunger that I suddenly felt. I scrambled my chair to the kitchen and asked my mom to warm up a bowl of leftover spaghetti, because that’s the first thing I saw in the fridge. I inhaled that spaghetti like it was the antidote for some deadly poison that I had ingested, and in a way, it was. A few spoonfuls into the bowl, I started to feel the symptoms residing. Relief flooded my mind and I promised myself that I would remember to eat plenty of food whenever I skipped my feeding tube from then on. I’m not a doctor, but it seems rational that my body is so adjusted to receiving 1500 calories overnight that when it doesn’t receive these calories, it loses its shit if I don’t give it enough fuel the next day. I should probably be a doctor.
Anyway, this insane hunger reaction only occurred one more time after the first one, but it wasn’t a big deal because I knew what I needed to do to fix it, and my mom was already in the process of cooking breakfast when it started. Until yesterday.
My quick-witted followers may already be noticing a problem. You see, the first two times I had this reaction, it was luckily the weekend and my family was home to help me get food. Yesterday, everyone was out of the house by 7:30 AM, and Sarah wasn’t coming over until 11-ish. Here are the ridiculous events that transpired yesterday morning. Spoiler alert: I didn’t die.
All I had for breakfast yesterday was a half a cup of coffee and a few sips of a milkshake. Totally not enough to sustain me until lunch, and I knew that at the time, but my hatred for being awake at 6 AM outweighed my desire to worry about my health by about 1 million to one, so I put very little thought into my small breakfast.
A few hours after everyone had left, while I was watching an episode of Mad Men and thinking about the pizza that Sarah and I were going to order, I suddenly felt warmer than usual. My legs started to tingle and as it spread to the rest of my body, I immediately knew what was happening. This was not a good situation, and my usual chilled out demeanor quickly turned to panic. I didn’t know what would happen if I didn’t eat something in the near future, but the sweat soaking my entire body hinted that it would probably not be a pleasant experience. I felt completely and utterly screwed.
I ran through my options in my head. Here’s what’s important to understand, if I absolutely had to I could have called my neighbor or Sarah and asked them to come over and help me get food, but if you know me, you know that I am extremely opposed to asking people for annoying help if I don’t need it. I needed to find food.
Without really thinking about what I was doing, I paused Mad Men and drove my chair to the kitchen. Nothing was more frustrating than what I saw. Food was everywhere, but all of it was just out of my reach. A bowl of grapes sat in the middle of our dining room table, next to a bowl of apples and oranges. Near the edge of the table sat a tin of cookies, several inches out of my reach, but even if I could have grabbed them, there’s no way I would have been able to pull the lid off. On my kitchen counter was a bag of muffins, two feet too high for me to reach. Three more tins of cookies sat similarly positioned on the other side of the kitchen. Food was all around me and I was completely helpless.
I desperately drove into my room, knowing that I never have food in my room, but searching for anything that might somehow help me reach food to quell the otherworldly feeling that now inhabited my body. A pack of Reese’s peanut butter cups sat on my nightstand, a few feet out of reach. It was maddening that I was so close, yet so far from all of this food. My stomach screamed at me.
As I turned around in my room, the greatest sight I’ve ever seen in all my life appeared before my eyes. Across my room, sitting on a TV tray at perfect Shane-height, was a 1-pound box of chocolates that I had received as a Christmas gift. My heart jumped out of my chest and I’m pretty sure I screamed in excitement. However, the battle was not over. My arms are so unbelievably shitty at performing simple tasks that worried I wouldn’t be able to pull the box onto my lap and open it.
I used my chair to gently push the TV tray into a better position, so I could get myself as close as possible. The box of chocolates was only about 6 inches away from my left knee. I used the strength of both my arms to lift my left hand as high as I could, which is about shoulder-height these days, and flung it forward with all my might. My hand plopped about 2 inches short and all I got was TV tray. On my second effort I was able to land two fingers on top of the chocolates, and I slowly began sliding it towards my lap. At this point I was laughing hysterically, possibly because my body was shutting down, but probably because I couldn’t help but think about how stupid and ridiculous this situation was.
“Shane passed away because he didn’t do his feeding tube and had a heart attack after not being able to reach his box of chocolates.”
When I pulled the box onto my lap, I felt the greatest sense of relief that I’ve ever felt in my life, and I’m not hyperbolizing it even a little. My adrenaline gave me the superhuman strength needed to pull the lid off of the box of chocolates. The next 15 minutes are a blur. I sat there in complete ecstasy, shoveling chocolate into my mouth and basking in the feeling of accomplishment that comes from saving your own life. I don’t know if I’ve ever been happier.
I understand that this story might seem insignificant, and it probably is. I could have called someone if I hadn’t found those chocolates, but when you spend your entire life relying on other people for help, doing something on your own feels absolutely incredible.
Next time you are feeling completely helpless, like there’s nothing you can do to fix a problem, keep looking; maybe you will find a box of chocolates.
Well look at that, it’s 2012. If the Mayans are correct, we have about 11 months left to live. Kind of depressing, yes, but our impending doom also has a bright side; we all have one last chance to stick true to our New Year’s resolutions!
I, for one, plan on going balls to the walls to achieve my resolution(s) this year.
Because I have failed at keeping my resolution every single year I have ever made one. What kind of man would I be if the apocalypse rolled around next December and I never once had the testicular fortitude to follow through on the promises I make myself each New Years Eve? A shitty one.
(Just for the record though, my resolution has been the same for the past 12 years; to learn how to jet ski, so I’m probably being a little unfair on myself.)
This year will be different though. No more excuses. No more whining. But just to be sure I don’t give up, I’m going to put my resolutions on here for all of you. That way, if I don’t stick to them, you can brutally humiliate me. Fear has always been my strongest motivator.
Here are the things I want to accomplish before we all die in a fiery apocalypse:
1. Get a Job
I’m 19 years old and I’ve never had a real job, in fact, I’ve never really even tried to get a job. In my mind, I believe that I could probably find someone to hire me pretty easily, but I feel like they would only be doing it to be nice to the kid in the wheelchair.
“Sure we can give you a job… uhh washing dishes. You can’t do that? How about handing the dirty dishes to the dishwasher? Can’t do that either? Uhhh… well you can supervise our dishwashers!”
I have this horrible mental image of my future coworkers standing around the water cooler whispering about how much help I need to do my job, and how unfair it is that I’m being paid just as much as they are to do a fraction of the work. First of all, my future coworkers are apparently douche bags since they all meet up at the water cooler to gossip about me behind my back, but in reality they would be making an accurate assessment, because if you have learned anything from reading my blog, it’s that I need help with mostly everything physical. (Interestingly, according to this mental image I have, my first job is going to be a white-collar office job that still uses water coolers.)
Remember that one time when I said I’ve never had a real job? Well, I kinda lied. I did work for a text messaging service called ChaCha for a solid year before I was fired for “cheating.” I put that word in quotations because I maintain that I was just a very efficient worker. Basically this job required me to log into a website and answer random questions that people texted me. It was a cool job in that I could work whenever I wanted, and naked if I felt like it, but that was just about the only bright side. What ChaCha doesn’t tell you during registration is that a majority of the questions you will have to answer are from hormonally imbalanced 13-year-olds trying to find different ways to masturbate. These types of questions lost their comedic novelty within 10 minutes, added to the fact that I only made half a fucking cent per question answered, and you may begin to see why I started “cheating.”
Anyway, I do honestly believe that I have skills that would be useful to businesses out there. Too often do I read professionally written documents, websites, newsletters, etc., that are FILLED with grammatical errors and painfully awkward sentence structure. It amazes me that real companies are content with using third graders to write their official business documents. My point is that, while I might not be an amazing writer, I can definitely write well enough to benefit a company that needs to produce written materials. So, if you own a business, my e-mail address is firstname.lastname@example.org (wink wink).
2. Open a Fast Food Restaurant
However, this fast food restaurant is going to be a little different from the usual because our claim to fame is going to be that we treat all of our customers how I am treated whenever I visit a fast food restaurant. Because of my wheelchair and chicken arms, I am treated like a royal prince at most fast food places (not Taco Bell, their employees don’t give two shits about anything). Most cashiers act like it is a momentous and awe-inspiring occasion that I made the dangerous journey from my house to grace them with my presence and order a cheeseburger. They also talk to me like I am afraid to order, like I’m a fast food virgin.
“You want a cheeseburger and French fries, hunny? Ok, and would you like a soda with that, dear? Maybe a Coke or some Sprite?”
There is an older woman who works at the McDonald’s near my house who, without fail, gives me a hug and a large kiss on the cheek every time I stop by for food. I wish I were joking.
At my restaurant, all customers will receive kisses when they walk in… from me. Grandmother-type women will hold their hands and emotionally support them as they order their food, and when my customers leave, all my employees will scream goodbye like they might never see them again, because that also sometimes happens to me.
3. Eat More Blue Jello
I don’t need to explain this one.
4. Roadtrip to California
This one is more serious than you might think. I don’t even know why, but I have this deep desire to drive the California with my best friend Jesse. It might be to prove that I’m capable of surviving on my own, but I think it’s mostly because it would be so much fun. Of course, it would be far from easy due to the whole SMA issue, but it’s totally possible.
I imagine my brother would come along, since he is one of my best friends, but also because he knows how to take care of me better than all of my friends. The most difficult part would be showering and going poop, both of which Andrew has helped me with, but are nonetheless awkward situations for both parties. I could probably get away with holding my poop for the 10-day trip. Think I’m joking? A few years ago, my family went to the beach for a week during the summer, and for whatever reason my body decided it was not going to poop in Ocean City, Maryland. After seven days I was only slightly uncomfortable, so adding three more days probably wouldn’t be too bad. I’m honestly convinced that one of the side effects of SMA is being able to go for long periods without “excreting waste” as my doctor would say. My doctor wouldn’t say that.
My mom is going to read this and it will ruin any chance I have of convincing her to let us go.
I could leave my boxers on to shower and just hang an air freshener on my penis during the day.
5. Don’t Drop Out of College
Although this resolution should probably go unstated, I’m adding it to the list because I can totally foresee my already questionable work ethic severely declining when the nonprofit starts to take off. I’m not off to a good start on this resolution. In my mind, I’ve already justified dropping out if I need to devote all my time to the nonprofit. However, if it does come to that, I don’t think dropping out will be too big of a deal, since that will mean the nonprofit has become extremely successful. Maybe this resolution should read, “Only Drop Out of College if You Absolutely Have to.”
6. Get My Book Published
If you remember, I had been waiting to hear back from the publisher about my proposal for over a month. A few weeks ago they finally got back to me and denied my book. It was slightly depressing but there was enough other stuff going on in my life that it didn’t bother me too much. Now I need to fix up some of the suggestions that the publisher made and rededicate myself to getting it published! Jeez, this is going to be a busy year.
7. Learn How to Jet Ski
When I was maybe nine or 10 years old, probably in second or third grade, for whatever odd reason, my elementary school was asked to walk in the Bethlehem Halloween parade. I don’t really understand why we participated, because it’s not like we had a marching band or anything that made us special. Our teacher just told us that we should all dress up as what we wanted to be when we grow up and arrive at the beginning of the parade with our parents on Saturday morning.
Bethlehem is home to approximately 70,000 people, so it’s a pretty sizable town. Our yearly Halloween parade is far from a big deal for most people, but I would estimate that a few thousand people line the sidewalks of Main Street to watch it each year. I remember initially being excited about participating in the Halloween parade. My family had taken my brother and I to watch the parade in years past, with the highlight always being the candy that people in the parade threw to the onlookers. I was excited to be the one with the power to throw candy to whomever I wanted.
However, you may have noticed a pattern by now throughout my stories, which is that normal events in my life are almost always complicated by my wheelchair. Such was the case for this Halloween Parade.
First of all, I had to figure out what I wanted to be when I grew up and how to incorporate this idea into a costume that involved my chair. Here’s an interesting thought that just crossed my mind; my chair is so much a part of me that my automatic response to choosing a Halloween costume was whether or not it would work with my wheelchair. At the same time, costumes that incorporate a wheelchair are a lot more difficult to make than you might think. People always suggest that I should be a car or a tank, and just plop a big, painted box over my head and wheelchair, but I’ve tried this, and the box inevitably slips out of position and falls on top of my joystick, causing my wheelchair to spazz the fuck out. Therefore, most years I have opted to dress up as something that only loosely involves my chair. Here are some examples for you to laugh at:
The year of the Halloween parade however, I ended up deciding that I wanted to be a lawnmower (a person who mows lawns, not the physical object) when I grew up. I know, practical. I was only 10 and at the time my dad owned a pretty big lawn business, and since I looked up to him, lawnmower it was. I wish I had a picture of this costume, but I basically dressed in jeans, boots, and a shirt and hat that read, “Burcaw Custom Lawn Service.” We attached a wagon to the back of my wheelchair with duct tape and filled it with a bunch of fake lawn mowing equipment. I looked pretty boss.
Naturally, it was pouring rain the morning of the Halloween parade. Bethlehem’s city officials chose to be assholes by not canceling the parade, and my elementary school made the responsible decision and called everyone to say that we were still expected to be at the parade. Awesome.
It’s important to understand that $25,000, electric wheelchairs do not mix well with rain. They are designed to be able to handle a small amount of water, but any prolonged exposure to heavy rain can result in serious damage. Last summer, I got caught outside in a flash rainstorm and my chair didn’t work for three days, and as you can probably imagine, being without my wheelchair makes me want to put my head through a wall.
My dad drove me to the parade; he would be walking next to me in the parade because I wasn’t old enough to rely on my friends to help me out with stuff yet. Our elementary school was designated the very last position in the parade. There’s nothing like a bunch of little kids in shitty costumes to send a parade out with a bang! This meant that we all had to stand out in the pouring rain at the beginning of the parade while the rest of the parade got started down Main Street.
My father insisted that we cover my chair in a rain poncho while we waited for our turn to join the parade, which in hindsight was definitely a good idea because my chair would have undoubtedly short-circuited and exploded during the hour that we had to stand there and wait.
Luckily, the rain had slowed to a steady mist when it was finally our turn to join the parade. My dad took the poncho off and secured the wagon to the back of my wheelchair. Our class merged onto Main Street and started the slow half-mile walk to the end. Obviously, the couple hundred people who decided to brave the rain to watch the parade acted like my costume was the cutest, most awesome thing they had ever seen in their life. There was a bucket of candy in the wagon behind me, and I instructed my dad to throw handfuls to people, as opposed to single pieces, because when I had watched the parade in past years, I hated all the douchers that only threw out single Tootsie Rolls.
A few blocks down the road, everything was going well, and then out of nowhere, the most annoying thing that could have happened, happened. The back right wheel of my wheelchair decided that it had served its duties long enough and broke off from the axle of my chair. All of a sudden, I saw my right wheel rolling down the road in front of me. My chair sharply and immediately veered to the right, and I almost hit my dad, who didn’t even notice my wheel had fallen off. He thought I was just driving towards the curb to be funny, so he started to yell at me, but then he must have noticed the empty axle because he ran over and helped me turn my chair off.
Really? Of all the times my chair could have chosen to be a dick, it had to wait until I was in front of hundreds of people, in the rain, and nowhere near my house or van.
Oh, also, the giant street sweeper that cleaned up after the end of the parade was only about 30 feet behind us when this incident took place, so when it passed us, it gobbled up all the tiny pieces that held my wheel in place. Thanks bro!
My dad was barely able to guide my chair to the edge of the curb. A few people who were watching the parade and saw the previous events unfold came over to see if they could help in anyway possible. Immediately, my dad became focused on figuring out a way to put my wheel back on, even if was only temporary, because the rain was picking up and I needed to get back to the car where we had left the poncho.
As a joke, my dad asked if anyone had any rope. I will never forget the look on this random dude’s face as he reached into his pocket, pulled out a long, thin, rolled up piece of rope and said, “Oh, I actually do!” I mean, obviously someone had rope, since carrying rope around in one’s pockets is such a normal thing to do. Anyway, my dad miraculously fashioned some type of knot that held my wheel onto the axle long enough for me to make it back to the van.
All in all it could have been a lot worse; the street sweeper could have eaten me alive, or I could have been walking in the parade on my own, or I could have crashed into an old woman and killed her, so I guess I can’t complain about how terrible that Halloween parade really was.