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.
You shouldn’t be surprised. Putting it simply (because I’m an English major and don’t have the scientific knowledge to put it any other way), the human body is held together by a framework of muscles and bones. SMA is a muscle wasting disease, which you should know by now basically just means my muscles are shitty at doing anything that muscles are supposed to do, and they’re constantly getting shittier. Don’t believe me? Since I started this blog 16 months ago, I’ve lost the ability to lift my hands any higher than mouth. When my nose or eyes or forehead itches, which seems to be all the fucking time now that I can’t reach those spots, I have to ask someone for a fork or a straw which I use to relieve the itch. Yes, it looks weird, but it’s better than constantly asking other people to itch my face for me. Anyway, my muscles, a large part of my framework, suck.
Another side effect of having shitty muscles is having shitty bones. If you’re not aware, bones that don’t bear weight for long periods of time become extremely weak and easy to break. My doctors tried to delay this process as much as possible when I was a little kid by making me use a “stander.” The stander was a torture device that held my body in a faux-standing position (like a fauxhawk, but different). My legs could never support the entire weight of my body, but the idea was that if I used the stander every day, forcing my legs to bear at least some weight, my bones would strengthen and not become as weak later on in life. However, 5-year-old Shane did not appreciate this logic and thought of the stander only as another way for his therapists to hurt him. I avoided the stander as much as possible and eventually my muscles and bones became so weak that standing in the stander became too painful to bear. I’ve been either sitting or lying down ever since, bearing almost no weight, and this has caused my bones to become pretty weak over the last 20 years.
We now understand why I’m fragile. However, I’m guessing it’s difficult to conceptualize how fragile (or how not fragile) I actually am. I don’t want you to think that flicking my arm will cause a compound fracture, but punching it with any amount of force might. If we ever meet in person, please don’t punch me.
To give you a better idea of my fragility, here are some things that would probably break me:
I suppose you can think of me as a toddler, in terms of how easily broken I am. (Are toddlers easily broken?)
My fragility is not, however, the only point of this post. Instead, I’d like to tell you about a recent event in my life when I legitimately feared for my safety because of my fragility. Let’s begin.
Several weeks ago my good friend Lily surprised me with an awesome phone call: “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”
I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my non-disabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.
In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was speaking in the basketball gym at Moravian, a smaller-ish building that does not have a built in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.
I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”
“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.
SMA does not cause seizures; I’ve never had one in my life, but toss out the word seizure next time you’re trying to get something from a person of authority and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.
While waiting in line to get in to Johnston Hall, secret service agents approached us and instructed “my companion” and I to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him. Spoiler alert: I’m not a terrorist; that’s not where I’m going with this story.
The gym was packed to capacity. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit it’s 1000 degrees in here,” and “Where the hell am I supposed to sit?”
Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.
(In noisy places, surrounded by people who’s heads are generally 2-3 feet above mine, it’s easy to feel small and insignificant. Even when screaming at the top of my lungs, I don’t have the lung capacity to be very loud. I’ve grown accustomed to not having much of a voice at loud, public events. I rely on facial expressions and the voices of my companions to communicate with other people.)
A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She motioned to follow her and led us down a narrow path created by a rope barrier along the edge of the gym.
When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.
Someone off the my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this isn’t the first time this awkward situation has arisen so I didn’t let it get to me.
A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.
I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and it ultimately was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.
Shane, not to be rude, but why the fuck did you start this story by telling us how fragile you are?
Calm down, agitated reader, I’m getting there.
Fast forward a few hours, the speech was pretty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it too. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who spent a majority of the speech yelling “DOWN IN FRONT,” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon in the making. In front of me sat a very old man who read a very graphic war novel and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans. One of them was black, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.
Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.
When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and JUMPED out of her chair. I kid you not, she literally leapt out of that fucking wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards Michelle.
This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.
To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.
Clearly I did. Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way. She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.
Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obama’s probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.
Use your imagination.
I can’t tell you how many times my parents said this to me throughout my childhood. It’s a statement I’m sure most of you heard as children as well, probably in response to you whining about how THERE IS NOTHING TO DO!
Being told to entertain myself with my own imagination used to piss me off. As a kid, I expected my parents to instantly resolve my boredom by spawning new toys and popsicles out of thin air. They never did. Instead, they told me to imagine I was in outer space or to build something using my imagination. No, that’s stupid, I used to think, and I would drive back outside to sulk at the unfairness of life… at least until my imagination took over.
In retrospect, I was an extremely imaginative little kid. I had to be. How else could a kid in a wheelchair rob banks, and shoot Indians (also in retrospect, how terrible is it that my little-kid mind naturally viewed Indians as the enemy?), and hit home runs, and throw touchdown passes? Sure, I found ways to involve myself in whatever my friends and I were doing, but none of those games would’ve been any fun if I didn’t employ an active imagination while playing them. And yet, when my parents suggested I use my imagination during times of boredom, I thought they were being the stupidest, lamest, most unfun parents on earth. Weird.
Today, I value my imagination. Not only do I acknowledge that it played a large role in my childhood, but I continue to use my imagination, even at 20 years old. Maybe I’m wrong, please tell me if I am, but I think a lot of people lose touch with their imaginations as they get older. Maybe this is the case for you. If so, here are some observations—mostly benefits—that I’ve made about my own imagination over the years.
Maybe you still have an active imagination. If so, perhaps this post will have some ideas that you can relate to.
Maybe you couldn’t care less and don’t feel like reading a long story. If so, don’t read it. Just use your imagination!
Imagination allows me to experience an escape from reality. Don’t get the wrong idea; I’m not trying to say that reality is so routinely unbearable that I constantly flee to my inner thoughts to find relief. My life just isn’t that sad. But there are occasional moments when stressors such as daily life, my responsibilities, my future, my health, and my relationships converge on my mind all at once, a clusterfuck of stressors, and in these moments it’s a lot more fun to simply think about something else. In a way, my imagination is occasionally a coping method.
In my senior year of high school I experienced one of these moments. It was the middle of winter, and I was sitting in English class pretending to pay attention. My eyes blindly scanned the lines of a Shakespeare poem we were the analyzing, while inside my mind, the floodgates of Hell were about to burst. The wheezy breaths I forced in and out hinted that there was phlegm in my lungs, that I might have pneumonia. My blazing fever confirmed it.
What am I going to do? Not only could this be the sickness-to-end-them-all, but at the very least, I knew I was about to miss a bunch of school, and finals were approaching. Staying home from school also means one of my parents has to stay home and take care of me, a burden I hate to place on them. (Mom & Dad: I know you guys don’t see it as a burden. You don’t need to talk to me about it after you read this story, lol. This was my mindset in 12th grade.)
As these chilling thoughts started to take control of my mind, I realized I would not make it through the rest of the day if I continued to obsess over my present situation (I would have, but it would’ve sucked). Shakespeare was not about to divert my attention (sorry Shakespeare fans), so instead I found solace in my imagination.
I imagined things like how nuts it would be if someone in the class spontaneously combusted. I imagined what the teacher’s reaction would be if I read from right to left next time she asked me to read an excerpt, or what her reaction would be if I just refused. I imagined that the cafeteria would be serving its orgasmic burritos, even though it was a Thursday, which I knew meant they’d be serving the rubbery fucking chicken patties that made every other person have diarrhea. As I imagined these things, my nerves started to calm, the sweat on my palms began to subside. The human mind is beautiful; by simply imagining things that I found funny and enjoyable, I patched those floodgates and delayed serious panic a little while longer. Crazy.
Imagination allows me to experience—or at least come close to experiencing—physical activities that are impossible for me because of my disease. When the neighborhood kids and I played football in the church parking lot behind my old house, I played full-time defense. Thinking back on this experience provides interesting insight into my young imagination.
On defense, I primarily played defensive back. For eight-year-old Shane, whose knowledge of football came mostly from playing NFL Blitz on Nintendo, I knew that my objective as a defensive back was to stop the wide receivers from catching deep passes. I relished my responsibilities at this position because I knew I was the last line of defense between my opponent and a touchdown. In REALITY, I did little more than drive around trying to put my wheelchair in the path of the wide receivers. In REALITY, young athletic children had no problem avoiding my hulking mass of a wheelchair. In REALITY, I might have been actually responsible for one or two dropped passes at most per game, but that’s all I needed, because I had my imagination. In my imagination, I was an intimidating force to be reckoned with out on the field. In my imagination, the offense stayed away from me because they knew there was no chance of getting past me. In my imagination, every dropped pass was because the wide receiver was fearful of me smashing into them with 300 lbs of metal at full speed.
Sure, I was delusional about my true impact on our games of football. But at the same time, I wasn’t so delusional that I ever wanted to play offense. Of the few times I ever lined up on the offensive side of the ball, I played running back, where the quarterback handed me the ball and my goal was to drive to the end zone without getting “tackled” by the defense. When my brother was on the opposing team, hand-offs to me always resulted in significant failure, because Andrew couldn’t give a fuck about pretending I was faster than him. On the other hand, if Andrew wasn’t playing, the other neighborhood kids used to LET me make it to the end zone every time I touched the ball, pretending that I was just too fast. Not even in my young imagination could I pretend that this wasn’t the most humiliating feeling on earth. Therefore, I mostly played defense.
Imagination leads to creativity. Laughing At My Nightmare, Inc. would not exist without the combined power of Sarah and I’s imaginations. I will never forget the day that she and I first had the idea to sell wristbands for my blog. We were eating together at Moravian, discussing the surreality of my blog becoming popular, when one of us challenged the other to imagine how insane it would be if we used my growing popularity to make a positive impact on the world. Over the next few months, our imaginations really took hold of our lives. Imagine if the idea of Laughing At My Nightmare became a nationally recognized message. Imagine if it went global. Imagine if we sold stuff to further promote the message. Imagine if we sold wristbands. Imagine if we turned this into a business. Imagine if we did more than sell wristbands. Imagine if we made movies and did speaking tours. Imagine if we started a nonprofit organization. Imagine if we needed to hire a lawyer. Imagine if our nonprofit became famous. Imagine if it became our lives.
And before we knew it, our imaginative creativity was becoming reality.
My imagination is also an infinite source for humor. A large percentage of the things my friends and I laugh about involve imagining ridiculous, hypothetical scenarios. Imagine if I tried to drive my chair down the escalator at the mall. Clearly, I would die. My chair would immediately roll forward and my neck would break before I was even halfway down. That part isn’t funny to me (I lie, it is), but can you imagine the utter disbelief of a random onlooker, watching a kid in the wheelchair confidently hurl himself down an escalator? That’s what makes me laugh.
Now that I think about it, most of the scenarios we imagine involve putting me in physically or socially awkward situations. The other day Andrew came to me with an idea for a funny video: “We are going to tie a leash around your wheelchair and then go to Wawa. Someone can film us from far away as I walk you to the front of the store and tie the leash to one of the bike racks. Then you will just sit there while I go inside and buy food.” Brilliant. A video will be coming soon.
We imagine public places where Andrew could get me out of my chair and lay me down (i.e. the counter at McDonald’s, the middle of an aisle at Walmart).
We also imagine ways for me to react to people trying to shake my hand, such as hissing at them or pretending they squeezed my hand too hard and broke it.
Lastly, and perhaps most importantly, using my imagination minimizes the scariness of my future. Living with the knowledge that my body is on a gradual downward slope makes the future a daunting enigma of uncertainty. Uncertainty is scary. I’ve said it before, but I don’t like my chances of finding a girlfriend, getting married, and having kids. In addition to that, every winter brings with it a new set of illnesses that threaten my life, and they only become more threatening with every year that passes. It should not surprise you that I don’t enjoy thinking about my future in terms of reality.
With all that being said, I’m able to remain optimistic by thinking about my future within the confines of imagination. Sometimes I imagine a doctor calling to inform us that they’ve found a “miracle” cure, and how beautifully perfect that moment would be. I also enjoy imagining myself 20 years from now, still living with SMA, but with a wife and kids and a career that I love. I imagine traveling the world, and meeting people, and sharing my story, and leaving an impact.
I need you guys to understand something, though. My imagination is powerful, but my determination to turn these imaginations into reality is even stronger.
The fact that I am disabled is deeply ingrained in my mind. Everything I do, every funny, awkward, unusual, and annoying event in my life—even boring daily routines like brushing my teeth—is affected by my disability. Living this way for 20 years has made me almost numb to it. When I’m lying on my bed, peeing into a jar, staring at the ceiling while I relieve myself, I’m not thinking, “This is an odd way to go to the bathroom compared to able-bodied people, what a peculiar result of my disability.”
I’m just going to the bathroom, probably not thinking about anything.
Obviously, I’m aware of all the ways my disability makes my life abnormal. If I weren’t, this blog would just be pictures of kittens, and Justin Bieber, and GIFs of Tyler the Creator laughing, and more pictures of Justin Bieber. But I’ve never truly taken the time to consider how my disability has helped shape my identity.
I’ve been working on a project lately that has unintentionally forced me to think about my own disability identity. In this post, I’m going to attempt to make sense of what I’ve been learning about disability identities, and subsequently, what I have learned about myself along the way.
As I mentioned a few months ago, one of the psychology professors at Moravian College, Dr. Dunn, asked me to work with him over the summer to compose an article on disability identity. I agreed immediately even though I admittedly know very little about psychology. Dr. Dunn has written an immense amount of work and done numerous studies in the psychological field of disability, so I figured it would be a learning experience for me. It was.
At its most basic level, for someone with a disability, disability identity involves feeling positively about oneself as an individual and identifying with the disability community as a whole. For our project, we wanted to look a little deeper and develop a model that identifies the most prevalent themes in all disability identities. To do this, we surveyed (or, are surveying, since we are still working on it) a variety of narratives published by people with disabilities of all types. This style of research allowed us to pinpoint recurring themes that are experienced by many or all people with disabilities.
We’ve identified six major themes that are encompassed in the identities of most people with disabilities: affirmation of disability, communal attachment, self-worth, pride, discrimination, and personal meaning (Dunn & Burcaw, 2012, in progress).
As I read these stories by other people with disabilities, I couldn’t help but to consider how each of these themes plays a part in my identity. Here is my reflection on a few of those themes.
Affirmation of disability
What it means: The belief that living with one’s own disability is a valuable experience that contributes to a positive personal identity.
On the surface, I believe that I possess this characteristic. Living with SMA has opened a world of opportunities for me, and you only have to read a few of my stories to know that I genuinely enjoy the fuck out of life. The list of amazing occurrences that were byproducts of my disability is incredibly long. Until a few years ago, one of the movie theaters in Bethlehem allowed people in wheelchairs to watch movies for free. I guess their logic was that it would take a miracle for us to make it out of our houses more than a few times a year, so if we happened to overcome all the odds and make it to the theater alive, we should be rewarded with a free movie. Obviously, I abused the free movie privilege so much that I wouldn’t be surprised if their reason for eventually revoking the policy was, “that asshole kid in the wheelchair who saw a movie every other day for three years.”
However, as I read more about affirmation of disability, I found a small caveat that I could not agree with. In a study of people with disabilities, it was found that many of them were strongly opposed to receiving any type of treatment that might cure them of their disability. Granted, this is not to say that one must choose to not be cured in order to have a positive affirmation of their disability, but I was baffled by the results of this study.
Sure, growing up with my disease has substantially influenced the person I turned out to be, but given the hypothetical opportunity, there is no question in my mind that I would choose to be cured. My identity and personality would not suddenly vanish just because I’d be able to walk and run and kick people in the face. Yes, I love my life, but I would be lying if I said that I’d choose to stick out the fight with SMA if I didn’t have to. That’s not like… cowardly, is it?
What it means: A desire to affiliate oneself with the disability community as a whole, a preference to associate with other people with disabilities.
If you read my story about muscular dystrophy summer camp, you’ll remember that I generally don’t enjoy hanging out with other people in wheelchairs. It may be because I developed an aversion at a young age and never gave myself a chance to get to know anyone that uses a wheelchair. It may also be that I’m not around people in wheelchairs very often in everyday life. It may be that I see everything I dislike about myself in other wheelchair people, so I avoid them to protect my self-esteem. It may be that I’m just a terrible person. In that regard, I do not possess particularly strong feelings of communal attachment.
I do, however, realize that I am a part of the disability community, and that we have a lot in common. We all face the difficulties of living in a world that is still far from being handicapped accessible. When I see a restaurant that has one fucking step to get into the front door, I don’t get angry because I personally can’t eat there, but rather, at the fact that the owners could be so ignorant. They might as well hang a sign on the front door that says No Wheelchairs Allowed. I’m looking at you, Subway.
What it means: The idea that one values oneself, in regard to one’s ability to perform tasks that are deemed important by the individual, others, or society (Dunn & Burcaw, 2012, in progress).
Let’s be honest, there are just some things that I will not accomplish in my lifetime. I’ll probably never win the MLB home run derby, and chances are I’m not going to break any Olympic records. I will never tie my own shoes or wipe my own butt. I will never be able to drive a car, or a boat, or a plane. I’m pretty sure I will never become the President of the United States.
Society values all of those things.
But I will make you laugh, and I will go to school and get a degree, and I will do awesome things with my friends, and I will do stupid things with my friends, and I will try my hardest to make my nonprofit succeed, and I will get my book published someday, and I will kick your ass in FIFA, and I will get a real job, and I will live life with intense passion, and I will make you laugh, and laugh, and laugh.
And that’s what I value.
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.
Every time I think about applying for a job, I imagine how potentially awkward but funny a job interview would be for me. So… since I have two huge essays to write within the next week, I decided to procrastinate more and write a hypothetical job interview. For this endeavor I’m going to pretend that I am applying to be a manager at corporate offices for Taco Bell (my dream job). Some aspects of this piece are slightly hyperbolized, the rest are completely made up.
*Imagine a small office in the heart of Taco Bell’s corporate office buildings, located somewhere in South Dakota (which is where I assume the actual Taco Bell corporate offices are located). In the middle of the room is a wooden desk with an Easter basket full of eggs sitting on top (*see below*). Across from me sits a tiny bald man with a furry black mustache. His eyes are sunken and dark, and his left eyebrow is twitching incessantly. He may or may not be in a methamphetamine withdrawal. He stands to greet me as I drive in, extends his hand to shake, realizes how completely obvious it is that I am unable to shake back, panics, but recovers his cool by bending over to give me a small, business-casual, peck on the cheek. Excellent start.
Mr. Goldplum: Good afternoon, Mr. Burcaw! Nice to meet you! How are you doing today?
Me: Nice to meet you! Thanks for the kiss, not awkward at all. I’m doing pretty well. I was pleasantly surprised by the flight of steps that led up to the main entrance, as well as the lack of a single elevator in this 43-story building. Also, thank you for scheduling my interview on the 20th floor. It was generous of you to only make me drag my body and 400-pound wheelchair up 20 flights of stairs. As you can see both of my legs are clearly broken from that adventure, but it’s fine, I don’t need them to walk, right?
Mr. Goldplum: My sympathies Mr. Burcaw. I didn’t realize you couldn’t go up steps in your wheelchair.
Me: (long pause) Oh, no it’s completely understandable. I make silly mistakes like this all the time! For instance, I shot your secretary in the face on the way in because I didn’t realize she wasn’t bulletproof. My sympathies, though. But seriously, I admire your company’s complete disregard for federal disability regulations. It takes real determination to give that little of a shit about other people. I will do your cute little interview today, but just know that if you don’t hire me, I will sue you. Then when I win and become the majority owner of Taco Bell, I will promote you to my new Cleaning Supplies Taste-Testing Department. So, where should we begin?
Mr. Goldplum: (Flustered. Also, peed his pants a little). Yes, of course. Why don’t you start by telling me a little bit about your previous work history?
Me: I’ve been a veterinarian at a local animal hospital for the past 37 years. It was a great experience and I think I have finally learned enough to become a corporate manager at Taco Bell.
Mr. Goldplum: Excellent. Most of our employees start out in the veterinarian business. Okay, now I would like to get to know more about you. Could you identify your biggest weakness?
Me: If your secretary out there somehow miraculously survives—by the way someone should probably call an ambulance, she seemed to be in a considerable amount of discomfort when I left her—she would probably tell you that I have anger management issues. She’d be right, but my anger management issues are by no means my biggest weakness. I believe that my biggest flaw is the fact that the Ecuadorian government has a $5 million bounty on my head. It’s a long story that I really don’t want to get in to right now, but I can guarantee you that the bounty hunters are planning their raid on this building as we speak. Foresight being 20/20 I now realize it was probably foolish to come here and put all your employees’ lives at risk, but I guess what you should take away from this answer is that I will do literally anything to get this job.
Mr. Goldplum: I have to ask you, Mr. Burcaw, why do you want this job so badly?
Me: On April 19, 2012… my sophomore year of college, I went to Taco Bell for lunch and ordered one of their Doritos Locos Tacos. I had been looking forward to it all day. In fact, I didn’t eat anything the day before just so that I would enjoy the Doritos taco even more. When I got home and unwrapped my taco, I was horrified to see that they had forgotten to put sour cream on it. Trying to remain calm, I searched my house for sour cream, but there was none to be found. I lost it. My world collapsed. It’s just not right. You can’t eat a Doritos Locos Taco without sour cream, sir. (Tears begin to stream down my face.) Something inside me changed on that day. Everything around me became dark. I lost my innocence. My faith in mankind was ripped away from me. I didn’t choose this life Mr. Goldplum, but as humans we react and adapt to what life throws at us. On that day I made a blood oath over my kitchen sink that I would devote the rest of my life to becoming a corporate manager at Taco Bell, so that no one ever has to experience the pain I felt on that day. That’s why I want this job, sir.
Mr. Goldplum: Great. And what strengths do you believe you bring to the company?
Me: Well, I can type pretty fast, assuming the person I’m dictating to can type pretty fast. I have great eye-hand coordination, but my lack of muscles leaves me no way of proving that. I’m an excellent liar. I once neutered 37 cats in one day when I was working at the animal hospital. If you don’t keep up on your vet stats, that’s the fourth best record in Michigan, where I practiced, since 1994. I can cross each eye individually. And last but not least, I like to consider myself a people person. Your secretary might beg to differ, but I doubt it because she’s probably dead by now.
Mr. Goldplum: I can certainly see that you are far more qualified than any of our other employees. Let me ask you, what do you find are the most difficult decisions to make?
Me: The ones where someone you love is dangling off a cliff, or a bridge, and you were able to grab them before they fell, but now they’re only holding on to your one hand with the tips of their fingers, and they scream stuff like, “Don’t let go!” which puts you in the awkward situation of explaining to them that there is no physical way for you to pull them up, so you have to decide if you should lie and yell something cheesy like “I’ll never let you go!” or just let them go and move on with life. Those have always been the most difficult decisions for me. I’m still practicing though, and I think I’m getting better at it.
Mr. Goldplum: I’m sorry to hear that Mr. Burcaw. You are a strange man. Tell me, who has been the greatest disappointment in your life?
Mr. Goldplum: I think we should wrap this up. Are there any questions that you have for me before we finish?
Me: What’s with the Easter basket?
Mr. Goldplum: We don’t talk about that.
Me: Are you going to kiss me on the way out?
*My voice dictation software turned “computer” into “Easter,” so I rolled with it.
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 email@example.com (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
This post has been temporarily for reasons beyond my control. I know, I’m sad too.
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.
My relationship with my lovely cousin, Rebecca, is by far one of the most significant and important aspects of my life. It would take me a solid eight or nine hours to fully explain the depth of our friendship, but I will try my best to condense it into the most memorable parts. Imagine this story as a highlight reel of our friendship.
Becca and I have obviously been cousins since birth; our dads are brother. However, for the first 10 years of our lives, we rarely saw each other. She only lived about a mile from my house, but our families just didn’t hang out that often. Sure, we got together for holidays and occasionally birthdays, but for whatever reason, Becca and I kept our distance at these family gatherings. Maybe it was the wheelchair barrier, perhaps it was our different genders, but we just didn’t interact when our families got together. Also, we attended separate elementary schools, which is probably the biggest reason we didn’t become friends until later on. In fifth grade, I would not have been able to tell you much more than Becca’s name and age, but the following year the stars aligned and the greatest friendship in the history of earth was created.
Since we have the same last name and were both very intelligent young kids (completely bragging), we were placed on the same academic “team” when we entered 6th grade at East Hills middle school. This meant that throughout 6th grade we were in almost all the same classes. I arranged with my teachers to sit next to Becca in all of the classes that we had together, since the transition to middle school was a scary one. Sitting by someone I knew greatly eased my nerves, as I didn’t have to worry about teaching new people how to help me.
The first few weeks of middle school were magical to say the least. We quickly discovered that we were almost identical in terms of personality, intelligence, and sense of humor. To this day, I have not encountered another human being who shares my sense of humor so similarly.
Anyone in the Burcaw family will tell you that we have a twisted sense of humor. A majority of our humor is derived from making fun of others, but there is an important distinction that has to be made; we don’t make fun of people because we don’t like them and want to upset them, but rather because the flaws that make all of us human are absolutely hilarious when analyzed in a humorous manner. That might not make sense to you, because it’s a difficult concept to describe. The simplest way to understand it is that Becca and I make fun of people almost constantly, including ourselves, but that doesn’t mean we truly feel that way. If you were to listen in on a conversation between Becca and I, you might get the sense that we hate each other, but we both understand that the insults we hurl back on forth are not meant to be serious.
Anyway, Becca and I quickly realized that we shared a sense of humor and we hit it off instantly. Every time Becca was called on in class to answer a question, I made it my mission to try to make her mess up and laugh, and she would always return the favor when I was called on. During “popcorn” reading, which is where a student reads a paragraph of text out loud and then chooses the next student to read, we often got in trouble for “popcorning” the same two or three students, either each other or our friends, because we were all trying to fuck each other up when we had to read aloud. There were a few occasions when we had to stay after school to explain to our teacher why we spent most of the class period laughing. We were actually pretty obnoxious now that I think about it, but we had fun.
Although we were not in many of the same classes for 7th and 8th grade, our relationship continued to grow as we spent almost every day together after school was over. Usually we would hangout out one of our houses and not really do much besides watch TV, eat food, and laugh our asses off. That’s the best part about our relationship; we don’t actually have to be doing anything to have fun.
When high school rolled around, I took it upon myself to make sure that Becca and I were together as much as possible. Because of my disability, I had a disability plan that outlined all the adaptations I needed for school each year. Throughout all four years of high school my disability plan had a clause that stated that I could request to have Becca in my classes if it was possible to coordinate our schedules. We justified it by saying that Becca was the only one who knew how to help me out, which was slightly true, but the reality is that anyone could have helped me and we just wanted to be in the same classes.
Being in the same classes together created lots of interesting situations during our high school careers.
First of all, Becca and I should have received a single high school diploma when we graduated, because there were not many assignments that we did separately. Since we sat next to each other in most of our classes, and spent most of our time outside of school together, we cheated. A lot. We both felt that if we understood the material we were working on, there was no harm in splitting an assignment 50-50 to maximize productivity. Some of our teachers even knew about it, and they would joke that we should just receive the same grade on all of our assignments. Sometimes our cheating methods got a little ridiculous, as in, Becca would do all our math homework and I would do all the science and then we would swap. Cheating on tests was a little more difficult. Luckily, we were able to sit relatively close to each other during exams, since she had to help me flip the pages of the test (which I can do completely on my own, shhhh). To all our past teachers that might read this, don’t hate us!
Another clause of my disability plan stated that I was allowed to leave class five minutes early before lunch, and five minutes early at the end of the day, in order to avoid the ridiculously packed hallways of our high school. I was also allowed to leave class to go to the nurse’s office, which is where I went to use the bathroom. Jesus Christ did we abuse those privileges.
During high school, I never once went to the nurse’s office to use the bathroom, because that would mean the middle aged school nurse would have to handle my shwang, which in my mind was far worse than holding it all day. Besides, I can hold my pee like it’s my job. However, none of my teachers knew this, so when Becca and I got tired of sitting in class, I politely asked to be excused to the nurse’s office, and Becca would escort me because I said I needed her to come with me and nobody ever questioned that line of reasoning. Then we would walk around the school until we felt like we were pushing the limits of how long it should take me to pee.
Similarly, we often came up with ridiculous reasons for why I needed to leave earlier than five minutes before the end of class at the end of the day, such as, Shane has to get his jacket on, or the elevator is broken so we have to go outside and around the school to get downstairs, or Shane has to pick up something from the nurse. We could pretty much do whatever the fuck we wanted by involving the nurse’s office in our excuse. Teachers automatically believed any reason I needed to go to the nurse, which we’ll mark up as a plus for being disabled.
Spending literally all of our time together during high school, we inevitably had our fair share of arguments and fights. The arguments usually stemmed from two sources: Becca getting tired of constantly having to help me, and me being a sarcastic asshole and not knowing when to stop.
Considering I need help with almost every physical action in the classroom (getting my books and binders out, adjusting them on my lap, moving books that are out of reach, switching between laptop and book, etc), it was no small wonder that Becca sometimes got tired of helping me. Unfortunately, Becca’s method for dealing with being annoyed with me was to stop helping me altogether. So every once in a while we would get in a fight and I would be forced to sit in class not doing anything until she lightened up, which I always found really amusing, although my amusement at her anger didn’t help the situation at all.
Sometimes we would get into arguments while we were walking together in the hallway. Becca usually ended the argument by reaching down and pressing the power off button on my wheelchair, leaving me temporarily stranded while she continued on her merry way. I hated when she did this but it also made me laugh.
I think a large reason for many of our fights was my inability to take anything seriously. Most of our fights were petty and downright stupid, and I was often too aware that in a few days we would be best friends again, so I didn’t ever really get too angry with her. On the other hand, Becca occasionally made small arguments much bigger than they had to be, so our diametrically opposite methods for dealing with controversy sometimes led to a few days of pretending we hated each other. Understand that I can count the number of times a fight got this severe on one hand.
Moving on, another activity Becca and I often did together was attend MDA fundraising benefits with my dad, who has raised over $100,000 for the MDA in the past decade. These events were usually held in ballrooms, and consisted of socializing, followed by dinner, followed by a presentation of sorts, followed by dancing. I only ever went to these benefits because I felt like it was the right thing to do, since these people were trying to help cure my disease. If you read that sentence and thought, “Wow what a dick!” let me explain why I didn’t like MDA benefits. These events concentrated all the annoying aspects of having a disability and jammed them into one evening, including:
-People speaking to me like I’m six years old, “Heyyyy Shaaaaane, hoooow aaaaareeee youuuu todaaaay?”
-People being genuinely amazed that I was in all honors classes at a normal high school for normal students
-Having to pretend I like other kids with diseases just because we all have diseases
-People giving me tons of free shit because they feel sorry for me (I enjoy free shit, but I don’t like the initial feeling of receiving it from some old person who thinks they’re making my week.)
And worst of all:
-All of these events feature some kid with some form of muscular dystrophy getting up in front of everyone to perform some type of awful song or speech or dance for everyone. The audience always bawls their fucking eyes out and quietly murmur about how inspiring and talented the kid is, while Becca and I sit there and try our absolute hardest not to burst out laughing. Some of these performances are really, really terrible, but since the kid is in a wheelchair, it’s inspiring; I just don’t get it. I need to move on because if I explain my feelings about this situation, you will all end up hating me.
Anyway, Becca and I went to a bunch of these fundraisers over the years and got through them by joking about all of it with each other. To be fair, I have made some life-long friends with other people who fundraise for the MDA at these events.
Becca and I continued to grow closer as high school progressed. When Becca got her license, we began hanging out less frequently, because she did some activities with her other friends that were not practical for my SMA and I to be doing. By less frequently, I mean we chilled every other day instead of every day. We still spent a fuck ton of time together.
Our high school graduation was a really special time for both of our families, as we had a few family get-togethers where we shared some crazy stories from our high school career. I think it was around this time when we all kind of realized how uniquely special our relationship was. Becca and I grew up and became adults together. The people we are today have largely been influenced by all the time we’ve spent together over the past nine years. Saying goodbye to Becca whenever she goes back to college is one of the worst things I have to do.
We’ve been through a lot together, and we have laughed at every minute of it. Love you Beeb!
Since my disease is progressive and medical researchers are taking their good old time in searching for a cure, the best I, or anyone with SMA, can do is attempt to slow the progression of the disease. I’m not talking about steroids or weightlifting; my muscles are going to continue to deteriorate no matter what I do because my body didn’t feel like developing the necessary proteins for muscle creation and maintenance while I was in the womb. I was the laziest fetus you’ll ever meet.
That being said, physical therapy can help slow the effects of muscle atrophy. I’ve been getting physical therapy on a regular basis since I was a baby, and the concept of how it helps me isn’t something I’ve ever really thought about or tried to explain to someone; it’s just a part of my life, but I realize that it might be slightly confusing to understand, so before I start with the funny stories, I’ll try to explain how physical therapy works for me; this is the longest sentence I’ve ever written; it’s never going to end; yes it will.
I will use my wrists as an example. So first of all, take a look at them:
Yuck is right! That’s one big mess of atrophy at its finest. A long time ago, when I was in early elementary school, my wrists look completely normal. They were straight and I could bend them in all the normal directions. Now, I can’t straighten them much past the 90° angle that they’re fixed at in the picture above, and if someone helps me straighten them, they still only straighten to about 110°.
In physical therapy, my therapist stretches out all of my muscles so that the atrophying process progresses at a slower rate than if I didn’t receive physical therapy. Think about it, when you sit in one position for a long period of time and then stand up, your leg muscles feel a little sore, right? The muscles in my body remain in relatively the same position all day every day, which is why they atrophy. My disease causes my muscles to deteriorate and weaken, and since I never move, that get stuck in the position that they’re in all day. Physical therapy serves the same purpose as standing up after you’ve been sitting for a long time; it stretches my muscles out.
For people with SMA, physical therapy consists of prolonged stretches of all the limbs. My therapist will push my wrists, or my knees, or my ankles, as far in the correct position as possible and hold it there for several minutes. The simple truth is that I’m sitting in my wheelchair a hell of a lot more of the time than I spend at physical therapy, so by a matter of reality and the demands of daily life my muscles get more atrophied over time. This means that, today, my physical therapist can push my wrist to 110°, but my muscles stop straightening at a certain point and go no further unless they tear, strain, or sprain (which has happened more than once and I will tell you about later). It’s kind of a losing battle when you think about it, but after I spend an hour in physical therapy I feel substantially looser, which is a great feeling. Also, imagine how fast my muscles would atrophy if I didn’t receive physical therapy on a regular basis, so there are definitely some benefits as well.
Over the years I have had some pretty unique experiences with physical therapy. I guess we’ll do this in chronological order.
From my toddler years until about a third or fourth grade, I received physical therapy from a woman that my family knew who had a private physical therapy practice out of her home. She basically only treated kids with some type of disability, so she really knew what she was doing despite the fact that therapy took place on her living room floor.
I absolutely hated physical therapy in the worst way during these years of my life. The shitty part about stretching out an atrophied muscle is that it hurts, and like I said before, if you stretch it too far, there can be serious physical injuries that result.
However, I was also kind of a bitch when it came to pain back in those days. Growing up, I was shielded from pain by my wheelchair and the fact that I didn’t do much physical stuff that could result in me getting hurt, so I didn’t learn how to tolerate pain as fast as normal kids do. This is why I hated therapy so much. Although my naïve brain exaggerated the pain, it still hurt, and I wasn’t old enough to appreciate that my physical therapist was actually doing a world of good for my body by stretching it out. I only received therapy once a week back then, but whenever that day rolled around, I would get all panicky and try to find ways to get out of having to go. Sometimes I would wait until my mom said it was time to go, and then I would pretend like I really needed to use the bathroom all of a sudden to waste a few minutes.
During those early therapy days, I developed a hypersensitivity to pain. I would anticipate a stretch hurting before my therapist had even started the stretch, and I would inevitably start yelling, “OW OW OW OW!” The problem then became that my therapist didn’t know when I was anticipating pain or actually feeling pain, and because of this I experienced some of my first muscle sprains during this time.
I want to try for one second to convey how terrifying it is to have absolutely no power over the muscles in my body while they’re being stretched. If you were at physical therapy, and you felt like a stretch was going too far, you could easily tighten your muscle, stopping the stretch and avoiding the pain. I can’t do that. I have to rely on verbal communication and trust that my physical therapist will listen to me when I say that a stretch is going too far and that I’m about to get hurt, but sometimes verbal communication just isn’t enough. Many times throughout my life, for a multitude of reasons, this was the case.
Forget chronological order. This is a good place to tell you a story because it will illustrate the horrifying experience of being stretched until my muscle sprains and not being able to do anything about it.
When I was in middle school I started receiving physical therapy at a rehab facility that is associated with the main hospital in my town. They have a whole pediatric division of the facility, where they mostly treat kids with disabilities. For my first few years at this facility, the same guy treated me each week, and to this day he is my least favorite physical therapist of all time.
This guy, we’ll call him Brett, is in my opinion the absolute worst kind of physical therapist, which is kind of ironic because the stories he told indicated that he was kind of a big deal in the world of physical therapy; although, I later found out that many people believed that Brett was an impulsive liar. He was the kind of guy who would complain about having to fly down to his beach house for a weekend to meet the maintenance man. Anyway, Brett gave less than half a shit about the opinions of his patients. He was a middle-aged man who acted like he’d been sent to Earth by God himself to perform physical therapy on the less fortunate. Granted, he was probably a great physical therapist for most other people, but he just refused to understand that my muscles could not withstand the same amount of pressure as everybody else’s. I think it was his secret goal to completely straighten all of my muscles, even though that was physically impossible by the time I started seeing him.
There is one incident that took place as a result of Brett’s power-complex that sticks out in my mind as the worst physical therapy experience I’ve ever had. I was probably 14 or 15 years old when this terrible incident took place. It was an evaluation night, which was something the physical therapists did four times a year for each patient to measure if any progress was being made. First of all, this system makes no fucking sense for someone with a disease that gets progressively worse; I’m obviously never going to make progress, but that’s beside the point. During an evaluation, Brett had to use a protractor-type device to measure the maximum angle that all my muscles could be stretched to. Brett fucking loved evaluations; I lost sleep worrying about them whenever one was approaching.
My knees have always been the most severely affected part of my body, since they move the least on a day-to-day basis. So in the typical “do exactly opposite of what Shane wants” Brett fashion, he stretched my knees the most aggressively of all my other muscles. I will give him this much credit, MOST of the time when Brett was stretching my knees and I began to wince, he would back off so I didn’t get hurt. By the age of 14 I had developed a much higher pain tolerance and didn’t cry wolf every time I thought a stretch was going to hurt. However, I always felt like Brett kind of doubted if I was ever in real pain when I yelped during a stretch, and I only yelped when I felt legitimate pain, so you can understand the constant underlying distrust I had towards him.
On this particular evaluation night, Brett boasted that we were going to set a record for my knees by performing a prolonged, gentle stretch, as opposed to a short, aggressive one. I felt sick at the thought of straightening my knee more than it has ever been straightened, but slow, long stretches were usually less painful, so I didn’t argue with him. My hands started to sweat buckets as he began to stretch my left knee. As the minutes ticked by, I laid on the therapy table and concentrated on trying to relax my muscles, which is pretty much physically impossible, but something I like to mentally tell myself I’m doing to stop a stretch from hurting. I remember looking out the tiny window in the corner of the small room we were in and noticing that it was considerably dark for 5 PM. This took place during the winter, and I remember having a brief thought that it might snow and that school would be canceled. I forgot what was going on for a split second at the thought of a snow day. Then he started to stretch my knee too far.
I could feel my muscle reaching its maximum stretching point, the point where I know if the therapist continues to stretch it any further, something is going to give and I’m going to get hurt.
“Oh God, ok no further, no further. It hurts!” I said in a hurried voice to try to get him to stop.
“Just a little longer, we are almost there,” replied Brett nonchalantly as he continued to push down on my knee.
These were the exact words I didn’t want to hear him say because I knew no matter what I said there was no stopping him from going further. He pushed even harder on my knee and I began to quietly whimper, “oh god, oh god, oh god!” I hated him so much.
“NO SERIOUSLY IT REALLY HURTS! PLEASE STOP!” I yelled.
Then it happened. A bolt of lightning exploded in my hamstring and shot all the way up my leg and throughout the rest of my body. Almost as if in slow motion, I could feel the fibers in my hamstring pulling apart from each other. They made a sound like sandpaper on wood that I could hear and feel on the inside of my body. The most intense burning pain I’ve ever felt flooded my entire knee and I screamed at the same time that my knee muscles gave way and straightened further than they had ever straightened in my life. Brett obviously was terrified by this and let go of my leg immediately; he had not intended for my leg to straighten this far. He frantically started apologizing, but by that point the pain was so unbearable that my uncontrollable sobbing and my dad’s hurried efforts to put my leg back to its natural position forced Brett into the background. I was a complete mess.
Probably a half-hour later, with two people stabilizing my leg, my dad was able to lift me back into my chair so we could go home. It is a good thing that Brett didn’t try to talk to me before I left, because I would have ruined the rest of his life in a matter of a few sentences, my anger towards him was worse than the pain.
My knee didn’t heal for several months, probably because I refused to go to the hospital, arguing that it was only sprained, when in reality I probably either partially or completely tore my hamstring. It was close to a year before I could stretch that leg without any pain. Brett found a new job in a different state several weeks after the incident, which was most likely just a coincidence, but I like to think he quit because of me.
Now that I think about it, most of the stories I have are about me getting hurt in physical therapy. Maybe someone needs to reevaluate the effectiveness and dangers of stretching kids with SMA.
There is one other time I was severely injured in physical therapy that’s pretty funny. I was receiving physical therapy in high school, through our school district’s physical therapy program. It was 7:30 in the morning and I was being stretched before school started on a table in the back of the nurse’s office at my high school. When therapy was over my therapist had to lift me off the table and put me back in my chair, however, in a way that I still don’t understand, my left arm got caught on my therapist’s shirt and twisted in an odd direction while he was spinning me into the correct position to get in my wheelchair. All of a sudden, incredible pain filled my upper left arm, absolutely incredible. It kind of caught me off guard and I yelled a bunch of non-intelligible words along the lines of, “holyshitthathurtstophelpohmygodowowowow.”
My therapist put me back in my wheelchair and although I was almost hyperventilating from the pain, the severity of the situation didn’t set in until I tried and failed to move my left arm. Nothing. Here’s the funny part: I once again convinced everyone that it was only sprained, out of my pure desire to stay as far away from hospitals as possible, and I suffered through close to two months of torturous pain every time I had to allow my parents to move my arm to change my shirt each day.
A few months later, once my arm was feeling better, I went down to Dupont Hospital in Delaware for a checkup with my doctors. One of them wanted me to have an x-ray on my ribs to check out my lungs, and while he was examining my x-ray he noticed that I had fractured my left arm and that it had healed on its own. Whoops!
I’ve never actually enjoyed physical therapy until about a year ago when Angie, who I’ve mentioned before, took over as my physical therapist. She was the only physical therapist I’ve ever had who shared my sense of humor, and who listened to me when I said something hurt. My dad and I had many great Monday nights hanging out with Angie while she stretched me. Unfortunately, like I said before, she recently accepted a new job in Delaware, so I will be starting with a new therapist this coming Monday night.
Maybe Brett will be back!