This is a new blog written by a 20-year-old with the same disease as me. He’s a cool dude and I have read some of his stories and they’re really great. He’s going to post his first story soon, but he asked me to give him a shout out so that he would have an audience when he posts. It’s definitely well worth your time to add him to the blogs that you follow.

“Mom, PLEASE!” I whined. She had to say yes. She had to.
    “I just don’t understand why you need to be up on his porch,” she replied for probably the 5th time, starting to get annoyed.
    “Mom, we want to have a HUGE battle and there are no good places to hide our army men down on the sidewalk. All you have to do is carry me up there, and I’ll stay there for a long time, so you won’t have to help me back into my chair for a while. Please!” I argued back, knowing how upset my friend Ben would be if we had to set up our toy army men figures down in his front yard where we always set them up.
    “Fine, let’s go.” She gave in, and my excitement soared.
    Sitting anywhere other than in my wheelchair was difficult, but my mom positioned me with my back in the corner of two walls on the concrete floor of Ben’s front porch. It was uncomfortable, but supportive enough to hold me upright. I promised her that I would be careful and that she could go back across the street to our house. I reiterated that I would not bother her again for a long time.
    Ben brought out his enormous tub of green army men, and we began setting them up in awesome arrangements around his porch. (Looking back, I realize this is all we did. We simply enjoyed “setting up” the army men for battle, but we never actually played the “fighting” part.)
    Then we heard the buzzing. A cicada killer swooped down from the trees above and landed on the floor a few feet away from us. Bees of any kind scared both of us more than a little. We froze. Unaware of what a cicada killer was at that point in our young lives, the two of us stared in horror at the biggest hornet either of us had ever seen. This beast could have easily stung us both to death and swallowed us whole with little to no problem.

     I panicked; “helphelphelphelphelp” was all that came out of my mouth.
    “I’ll go get your mom,” said Ben, bravely standing up and preparing to dash past the slowly approaching monster.
    “NO PLEASE NO! She’s going to get really mad if I ask her to come back so soon! Don’t leave!” I cried. In reality, my fear of getting stung by the giant hornet far exceeded my concern for irritating my mother, but I was also equally afraid of being left alone to die while Ben went to find my mom. I am completely helpless when I’m not in my wheelchair. Even at the age of five, Ben was a loyal companion; he wasn’t going to leave me stranded on his porch.
    The next several minutes are cloudy, probably the result of my brain repressing this awful experience, but somehow we ended up huddled in the corner together, armed with a large bottle of insect-repellent cream.
    Naturally, we assumed that the cicada killer would want nothing to do with us if we smelled like insect-repellent… so we showered ourselves in it. We smeared handfuls of the white cream on our arms, legs, and faces, not even bothering to rub it in. I had Ben pour the cream on the top of my head and also asked that he put a few globs in the open end of my shorts, which were hanging wide open due to the way I was sitting with my knees up. Ben did the same. You could have smelled us from a block away, and our clothes were ruined, but we felt a little safer and ready to take on the killer.
    No sooner had we prepared for the battle of our lives, the cicada killer decided to fly away.
    Victory.

    It’s 3:00PM on a humid day in July. Instead of racing around outside with my neighbors like I should be, I’m sitting on the toilet, strapped into my specially adapted backrest, quietly weeping at my ridiculous situation. What is wrong with me? On my bare lap sits our house phone, waiting for me to gather the nerves to call Ben.

***

    A few hours before I found myself crying on the toilet, Ben and I had been spending the day the same way we spent every day of our summers, playing cops and robbers, cowboys and Indians, and other crazy games of our young imaginations. On that particular day we were constructing an epic volcano in Ben’s backyard sandbox. By “we” I really mean Ben. Sitting in the sandbox was difficult for me at this point in my life, so I sat above in my wheelchair and played the role of bossy six-year-old who wants to help but can’t sit in the sand.
    “The left side needs more sand.”
    “Careful you’re gonna wreck it.”
    “You should try to dig a moat around the outside.”
    “Oh my God! Move, move, move! I just saw a huge pincher-bug by your foot!”

    The pincher-bug I spotted quickly destroyed our desire to finish the sand volcano, even though Ben’s mom was going to allow us to make it erupt with vinegar and baking soda. Instead, we spent the next hour spraying stuff (mostly each other) with Ben’s garden hose. It was around this time, after drinking copious amounts of water from the hose, when I noticed that I needed to pee.
    In my early elementary school days, I viewed going to the bathroom as nothing but a nuisance. During the summer, bathrooming meant stopping whatever awesome game Ben and I were playing, returning to my house, having my mom carry me upstairs to the bathroom, undressing, using the toilet, redressing, being carried back downstairs, and finding Ben again. The whole process probably took 20 minutes, but that’s a lot of time to a six-year-old. For this reason I chose to ignore my bladder on most summer days, holding my urine until it became painful and then some.
    The “full bladder pain” became noticeable while we were playing with the hose, but I put it out of my mind when Ben’s mom brought out a new super soaker to play with.
    Half an hour later, as we quietly crept around the back of the bank that we were robbing (our neighbor’s shed) with our fully loaded super soaker, I began to sweat. My breathing became rapid and shallow. This was not a nervous reaction to the felony we were committing, but rather my body trying to tell me that I was going to explode if I didn’t pee soon. But you don’t just go to the bathroom in the middle of stealing one billion dollars from the most highly guarded bank in the entire world.
    When the bank guards open fired with their machine guns, Ben leapt behind a birdbath and fired back at the windows of the shed. It was the climax of the heist. Ben desperately shouted for me to run in for the money while he covered me, but I couldn’t pretend anymore. I couldn’t even move. A small trickle of urine forced its way out of my body and I lost control.
    I closed my eyes and basked in the orgasmic feeling of my painfully swelled bladder emptying. Nothing on earth mattered. Not the fact that I was peeing in my pants. Not the fact that I was doing so three feet away from my best friend. Not the fact that I was in the middle of my neighbor’s back yard. Not the fact that halfway through the emptying I was sitting in a warm puddle. Not the fact that six-year-olds don’t pee in their pants. Not the fact that it was running down my legs into my shoes and socks. Not the fact that my mom was going to kill me. Not even the fact that Ben had been shot by the guards and was now lying dead next to me.
    “I’ll be right back.” I said nervously as I finished peeing and started for my house. I didn’t think Ben noticed what had just happened, and keeping it that way suddenly became my biggest priority. He’d obviously never treat me the same way if he knew I was a baby that peed his pants. I was entirely convinced that he would associate me peeing in my pants with me being in a wheelchair and he wouldn’t want to be my friend anymore.

***
   
    I dialed Ben’s house number through watery eyes from the seat of the toilet. His number was the only phone number besides our own that I knew by heart, probably from calling it every morning to find out when he could come outside to play. As it rang I gritted my teeth and tried unsuccessfully to stop my hyperventilating breaths. I hated my mom for making me do this. She had reacted exactly how I had expected her to when I arrived home. Lots of yelling about how I needed to learn to stop what I was doing when I had to go to the bathroom. Playing is not more important than taking care of your body, blah, blah blah.
    When she asked if I still needed to go more, I lied and said that I did, making the brilliant reasoning in my six-year-old brain that she would not be as mad if she knew that I had at least been able to somewhat control my bladder. She was. My chair was literally dripping with piss.
    After strapping me onto the toilet, she handed me the phone and said, “Call Ben and tell him why you are not allowed back outside today.”
    I stared at her in horror, knowing she had already made up her mind.
   
Ben’s mom answered the phone, “Hello?”
    “Hi… is Ben there?” I sheepishly asked. I felt like she knew.
    “I’ll go find him. I thought you guys were outside…”
    “Hello?” It was Ben.
    “Hey Ben,” I started crying again, glancing to make sure my mom wasn’t in the bathroom, “Ummm… I can’t come back out to play.”
    “Aww man! Why not?” he moaned.
    “Well I was really really sweaty when I got inside, and (huff huff huff) my underwear and shorts and wheelchair were like wet from the sweat, but my mom thought it was pee so she grounded me. She thinks I peed in my pants.” I lied, still extremely embarrassed by the fake story I was telling him.
    “Oh… darn. Ok well can you play tomorrow?”
   
Tomorrow we did play, but before we tried to rob the bank again, I went back to my house to get ammo and body armor (and to use the bathroom).

My dad, author of The Sidecar Kings (<- click to buy, proceeds benefit the MDA!), has been doing lots of writing lately… about me. When I started reading his stories, I will admit it was a little weird, seeing my life through someone else’s eyes. After I got over that tiny emotional hiccup, something else occurred to me: his stories were excellent.

Without giving too much away, I’m excited to announce that my father and I will be working on combining our collective experiences of my life into a book! We both agreed that a book offering two unique viewpoints of my unique situation will have a much better chance of success than if either of us tried to write a book on our own. I’m better at handling the comedic aspects of my life, and as you’ll see in a minute, my dad is better at the emotional.

So without further ado, here is a story from my dad’s collection. Take a few minutes to read it, and if you would like to contact him about his book, our book, this story, or life you can email him at jsbur886@aol.com

“This past May, Ride for Life was at Hershey Park. There aren’t too many rides Shane can go on because of his inability to control his balance, but there are a couple. One of them is a giant Ferris wheel, the kind with circular gondolas.

As is the case with every amusement park, the handicap accessible entrance is always the exit of the ride. This ride was elevated, so we had to go through the exit gates. At the gates a group of kids were waiting for their friends to come off the ride. They inadvertently blocked our way and when they saw Shane, they peered at him like he had just fallen from the sky. We all got used to that “circus is coming to town” look long ago, but it’s still something we’d rather do without.

Anyhow, once we got past the gawkers, we continued on up a long switch back ramp and finally ended at the ride exit platform. Some riders were just getting off as we approached. Since it was the first weekend the park was opened for the season, the ride operators were still going through their learning processes. They were also cognizant of handicapped riders. As soon we appeared, one of the operators instructed us to park in a safe spot away from the ride. On the opposite side of the ride were throngs of people waiting to board… watching.

In most parks we‘ve been in, there is an unwritten “no waiting” rule for handicapped riders, so we didn’t have to wait long to get on the ride. I noticed Shane looking over at all the people and then looking away. I could tell he wasn’t comfortable, as the throng began staring, knowing we were going to be next in line, ahead of them.

When it was our turn, the operators helpfully opened the gondola door and held it open for us. Andrew hopped in first. I picked up Shane, cradle fashion and carefully stepped onto the swinging gondola. I have done this several times and have gotten pretty good at it. It’s easy to fall. I’m fortunate that I have not yet. Once in the gondola, I had to place Shane on the circular bench seat next to me, a hard plastic affair without any side support. It took several minutes to get him squared away. I awkwardly held him the best I could.

Funny thing about throngs… invariably there’s always one asshole within. Sure enough, we could clearly hear someone complaining about how long our loading took. I shot a glance in the direction of the voice but no one would look me in the face. It appeared one collectively embarrassed the all.

Once finally underway, we rose into the sky. Shane was stable enough that he was able to look around and take in the scenery high above the ground. He loves high places. Since the wheel was still loading, we stopped frequently. During one of our stops, a large hawk flew into view. The majestic bird circled around the wheel a couple of times, tipping its wings, appearing to dance on the wind currents above us. It was beautiful, close enough to see its piercing eyes looking us over. Then it disappeared, as quickly as it came.

Shane looked up at it and just above a bare whisper, he longed, “Wish I could fly like that… to be free.” I promptly looked away, my eyes immediately moist. Andrew caught me and asked what the matter was. I told him the pollen was very heavy and it was making my eyes water.

We rode the rest of the ride in silence.

Once the ride ended, we reversed the loading process, which took even more skill than loading. I managed to make it painless for Shane and once in his chair he complimented me on my acrobatic one-handed lift and grab. Two rarities, a pain free transfer and a compliment to boot.

He and Andrew raced down the ramp they came up, testing limits of tires and sneakers through the turns. 

Freedom to dance on the wind… Lord let it someday be.”

This post has been temporarily for reasons beyond my control. I know, I’m sad too.

My relationship with my lovely cousin, Rebecca, is by far one of the most significant and important aspects of my life. It would take me a solid eight or nine hours to fully explain the depth of our friendship, but I will try my best to condense it into the most memorable parts. Imagine this story as a highlight reel of our friendship.

Becca and I have obviously been cousins since birth; our dads are brother. However, for the first 10 years of our lives, we rarely saw each other. She only lived about a mile from my house, but our families just didn’t hang out that often. Sure, we got together for holidays and occasionally birthdays, but for whatever reason, Becca and I kept our distance at these family gatherings. Maybe it was the wheelchair barrier, perhaps it was our different genders, but we just didn’t interact when our families got together. Also, we attended separate elementary schools, which is probably the biggest reason we didn’t become friends until later on. In fifth grade, I would not have been able to tell you much more than Becca’s name and age, but the following year the stars aligned and the greatest friendship in the history of earth was created.

Since we have the same last name and were both very intelligent young kids (completely bragging), we were placed on the same academic “team” when we entered 6th grade at East Hills middle school. This meant that throughout 6th grade we were in almost all the same classes. I arranged with my teachers to sit next to Becca in all of the classes that we had together, since the transition to middle school was a scary one. Sitting by someone I knew greatly eased my nerves, as I didn’t have to worry about teaching new people how to help me.

The first few weeks of middle school were magical to say the least. We quickly discovered that we were almost identical in terms of personality, intelligence, and sense of humor. To this day, I have not encountered another human being who shares my sense of humor so similarly.

Anyone in the Burcaw family will tell you that we have a twisted sense of humor. A majority of our humor is derived from making fun of others, but there is an important distinction that has to be made; we don’t make fun of people because we don’t like them and want to upset them, but rather because the flaws that make all of us human are absolutely hilarious when analyzed in a humorous manner. That might not make sense to you, because it’s a difficult concept to describe. The simplest way to understand it is that Becca and I make fun of people almost constantly, including ourselves, but that doesn’t mean we truly feel that way. If you were to listen in on a conversation between Becca and I, you might get the sense that we hate each other, but we both understand that the insults we hurl back on forth are not meant to be serious.

Anyway, Becca and I quickly realized that we shared a sense of humor and we hit it off instantly. Every time Becca was called on in class to answer a question, I made it my mission to try to make her mess up and laugh, and she would always return the favor when I was called on. During “popcorn” reading, which is where a student reads a paragraph of text out loud and then chooses the next student to read, we often got in trouble for “popcorning” the same two or three students, either each other or our friends, because we were all trying to fuck each other up when we had to read aloud. There were a few occasions when we had to stay after school to explain to our teacher why we spent most of the class period laughing. We were actually pretty obnoxious now that I think about it, but we had fun.

Although we were not in many of the same classes for 7th and 8th grade, our relationship continued to grow as we spent almost every day together after school was over. Usually we would hangout out one of our houses and not really do much besides watch TV, eat food, and laugh our asses off. That’s the best part about our relationship; we don’t actually have to be doing anything to have fun.

When high school rolled around, I took it upon myself to make sure that Becca and I were together as much as possible. Because of my disability, I had a disability plan that outlined all the adaptations I needed for school each year. Throughout all four years of high school my disability plan had a clause that stated that I could request to have Becca in my classes if it was possible to coordinate our schedules. We justified it by saying that Becca was the only one who knew how to help me out, which was slightly true, but the reality is that anyone could have helped me and we just wanted to be in the same classes.

Being in the same classes together created lots of interesting situations during our high school careers.

First of all, Becca and I should have received a single high school diploma when we graduated, because there were not many assignments that we did separately. Since we sat next to each other in most of our classes, and spent most of our time outside of school together, we cheated. A lot. We both felt that if we understood the material we were working on, there was no harm in splitting an assignment 50-50 to maximize productivity. Some of our teachers even knew about it, and they would joke that we should just receive the same grade on all of our assignments. Sometimes our cheating methods got a little ridiculous, as in, Becca would do all our math homework and I would do all the science and then we would swap. Cheating on tests was a little more difficult. Luckily, we were able to sit relatively close to each other during exams, since she had to help me flip the pages of the test (which I can do completely on my own, shhhh). To all our past teachers that might read this, don’t hate us!

Another clause of my disability plan stated that I was allowed to leave class five minutes early before lunch, and five minutes early at the end of the day, in order to avoid the ridiculously packed hallways of our high school.  I was also allowed to leave class to go to the nurse’s office, which is where I went to use the bathroom. Jesus Christ did we abuse those privileges.

During high school, I never once went to the nurse’s office to use the bathroom, because that would mean the middle aged school nurse would have to handle my shwang, which in my mind was far worse than holding it all day. Besides, I can hold my pee like it’s my job. However, none of my teachers knew this, so when Becca and I got tired of sitting in class, I politely asked to be excused to the nurse’s office, and Becca would escort me because I said I needed her to come with me and nobody ever questioned that line of reasoning.  Then we would walk around the school until we felt like we were pushing the limits of how long it should take me to pee.

Similarly, we often came up with ridiculous reasons for why I needed to leave earlier than five minutes before the end of class at the end of the day, such as, Shane has to get his jacket on, or the elevator is broken so we have to go outside and around the school to get downstairs, or Shane has to pick up something from the nurse. We could pretty much do whatever the fuck we wanted by involving the nurse’s office in our excuse. Teachers automatically believed any reason I needed to go to the nurse, which we’ll mark up as a plus for being disabled.

Spending literally all of our time together during high school, we inevitably had our fair share of arguments and fights. The arguments usually stemmed from two sources: Becca getting tired of constantly having to help me, and me being a sarcastic asshole and not knowing when to stop.

Considering I need help with almost every physical action in the classroom (getting my books and binders out, adjusting them on my lap, moving books that are out of reach, switching between laptop and book, etc), it was no small wonder that Becca sometimes got tired of helping me. Unfortunately, Becca’s method for dealing with being annoyed with me was to stop helping me altogether. So every once in a while we would get in a fight and I would be forced to sit in class not doing anything until she lightened up, which I always found really amusing, although my amusement at her anger didn’t help the situation at all.

Sometimes we would get into arguments while we were walking together in the hallway. Becca usually ended the argument by reaching down and pressing the power off button on my wheelchair, leaving me temporarily stranded while she continued on her merry way. I hated when she did this but it also made me laugh.

I think a large reason for many of our fights was my inability to take anything seriously. Most of our fights were petty and downright stupid, and I was often too aware that in a few days we would be best friends again, so I didn’t ever really get too angry with her. On the other hand, Becca occasionally made small arguments much bigger than they had to be, so our diametrically opposite methods for dealing with controversy sometimes led to a few days of pretending we hated each other. Understand that I can count the number of times a fight got this severe on one hand.

Moving on, another activity Becca and I often did together was attend MDA fundraising benefits with my dad, who has raised over $100,000 for the MDA in the past decade. These events were usually held in ballrooms, and consisted of socializing, followed by dinner, followed by a presentation of sorts, followed by dancing. I only ever went to these benefits because I felt like it was the right thing to do, since these people were trying to help cure my disease. If you read that sentence and thought, “Wow what a dick!” let me explain why I didn’t like MDA benefits. These events concentrated all the annoying aspects of having a disability and jammed them into one evening, including:

-People speaking to me like I’m six years old, “Heyyyy Shaaaaane, hoooow aaaaareeee youuuu todaaaay?”
-People being genuinely amazed that I was in all honors classes at a normal high school for normal students
-Having to pretend I like other kids with diseases just because we all have diseases
-People giving me tons of free shit because they feel sorry for me (I enjoy free shit, but I don’t like the initial feeling of receiving it from some old person who thinks they’re making my week.) 

And worst of all:

-All of these events feature some kid with some form of muscular dystrophy getting up in front of everyone to perform some type of awful song or speech or dance for everyone. The audience always bawls their fucking eyes out and quietly murmur about how inspiring and talented the kid is, while Becca and I sit there and try our absolute hardest not to burst out laughing. Some of these performances are really, really terrible, but since the kid is in a wheelchair, it’s inspiring; I just don’t get it.  I need to move on because if I explain my feelings about this situation, you will all end up hating me.

Anyway, Becca and I went to a bunch of these fundraisers over the years and got through them by joking about all of it with each other.  To be fair, I have made some life-long friends with other people who fundraise for the MDA at these events.

Becca and I continued to grow closer as high school progressed. When Becca got her license, we began hanging out less frequently, because she did some activities with her other friends that were not practical for my SMA and I to be doing. By less frequently, I mean we chilled every other day instead of every day. We still spent a fuck ton of time together.

Our high school graduation was a really special time for both of our families, as we had a few family get-togethers where we shared some crazy stories from our high school career. I think it was around this time when we all kind of realized how uniquely special our relationship was. Becca and I grew up and became adults together. The people we are today have largely been influenced by all the time we’ve spent together over the past nine years. Saying goodbye to Becca whenever she goes back to college is one of the worst things I have to do.

We’ve been through a lot together, and we have laughed at every minute of it. Love you Beeb!

When I was younger, probably 13 or 14, I attended a weeklong summer camp for kids with Muscular Dystrophy. In an earlier post I mentioned that this camp is where I first developed a fear of feeding tubes, when a kid’s feeding tube in my cabin fucking erupted like a tiny volcano while he was sleeping one night. If it’s ok with all of you, I’d like to tell you about one more incident that took place at this camp that solidified my belief that I will never get along with other people in wheelchairs. There will also be some side stories sprinkled on top to make this story go down easier.

There was another kid this camp who had the same exact disease as me; we shall call him Tim. I’m going to try my best to be as honest and fair as I can when I describe Tim, but you have to understand, during this week of summer camp, Tim was my archfuckingnemesis. I hated Tim. Today, I realize I probably didn’t give him enough of a chance, and my opinion of him was shaped by my 13-year-old mind, so there is a good chance that Tim is actually a very cool dude (doubt it). However, this was certainly not the case back then. We’ll get to Tim in a little bit.

When I arrived on the first day of camp, the first thing I noticed was that all of the other kids were, or acted, younger than me, which instantly made me have second thoughts about letting my parents leave me here for a whole fucking week. I could smell immaturity in the air. While my parents got me signed in with the camp officials, a bunch of wheelchaired-kids chased each other around, wielding balloon swords. It was obvious that a few of them were young enough that balloon-sword fighting was an acceptable and normal thing to be to be doing. However, a couple of them were at least as old as me, if not older, and it bewildered me how they were getting such a huge kick out of PRETENDING to stab other kids with their balloon swords. I remember wanting to scream at them, “It’s a fucking balloon! It won’t hurt if you stab each other! What are you guys even doing?” It’s kind of interesting to me that this small observation immediately made me dislike every kid at the camp.

Another observation I made in the first few minutes of arriving to camp was that almost none of these kids had shoes on. Some had only socks; most just let their bare feet flop around in the breeze. All of them had severely atrophied ankles, but so did I, and I wore splints that held my feet straight during the day. Over my splints I wore normal shoes, so I was confused to say the least by everyone’s bare feet.

I’m going to do my best to describe my thought process as I began to make sense of the situation. I wore shoes because I often went out in public, where wearing shoes is the socially acceptable behavior. Additionally, I was well aware that my atrophied feet look weird to other people. Growing up in a wheelchair, getting people to view me and treat me like a normal person was paramount. Gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging me as a normal human being. I started to feel extremely uneasy as it dawned on me that none of these kids understood this concept. My young mind started racing. This meant that these kids probably didn’t have too many friends, which meant they probably didn’t understand how to have normal human interactions, which was why they were all acting so immature! It all clicked in my mind. Look, I feel completely fucked up for thinking this way and for judging all of them so quickly, but if I’m going to be 100% honest with all of you, I have to admit that my judgments were actually pretty accurate, which blew.

Am I saying that if you’re in a wheelchair and you don’t wear shoes, you are an immature social outcast? No, of course not, but I’m trying to give you a sense of how I analyze and interpret the world and the interactions I have with people. Unfortunately, the kids at this camp ingrained in my mind the idea that physical appearance has a big effect on how others treat me. I hate to say it, but these kids made me understand how easy it is to look at someone in a wheelchair and write him off as socially awkward because he just doesn’t look normal.

Anyway, after my parents checked me in, it was time to take all my luggage to my cabin, and to meet my personal counselor who would be playing the role of caregiver (which is a word I absolutely despise) during the upcoming week. I was unbelievably fortunate in that my counselor was the chillest dude ever; he genuinely treated me like I was just one of his friends, which made saying goodbye to my parents a lot easier. Once we got settled and all the parents had gone home, I began talking to the other kids and counselors in my cabin. This is when I first met Tim.

Tim is a few years older than me, so during that week of summer camp, he was probably 16ish, making him one of the oldest kids at the camp. I could tell right away that Tim thought he was God’s gift to the camp. He told jokes that weren’t funny and stories that were obviously not true; the other kids completely bought his bullshit, and Tim loved that kind of attention. The best way I can describe Tim for you is that his favorite band was Limp Bizkit.

We all went outside and Tim felt it was necessary to show everyone how fast his wheelchair was. Cool Tim, my chair is fast too. Nobody cares. The most annoying part was that Tim was pretty popular among the counselors, but in the fakest way possible. They had to give him attention; he was constantly trying to impress them, and nobody was going to deny Tim the attention he demanded, after all, he’s in a wheelchair.

The fact that Tim had the same disease as me was really what made me hate him. I felt like I knew him better than anyone at the camp. I knew his SMA did not affect his brain and social skills, so why was he acting like such a doucher? A tiny voice in the back of my mind kept saying, “you’re not so different from Tim yourself.”

It was so completely obvious to me when the counselors pretended to laugh at his jokes and pretended to believe his stories. Tim seemed totally oblivious to all of this, which made me nervous. Was I misinterpreting the counselors’ interactions with me as being genuine, when in reality they were really just humoring me the same way they humored Tim? Up until this point in my life, I felt like I was pretty good at reading people’s faces and their tone of voice to determine whether they were genuinely interacting with me, or if it was the fake “you’re in a wheelchair, so I’m being nice to you” type of interaction. Tim made me severely doubt myself.

On one of the first days of camp, our cabin went to the swimming pool at the camp for the afternoon. This meant that all the counselors had to carry their respective camper into the pool so we could “swim.” Of course, Tim immediately started telling anyone that would listen about how long he could hold his breath. I remember asking my counselor to carry me to another part of the pool where Tim wouldn’t annoy us, which my counselor thought was hilarious.  Tim continued telling everyone about how he was a master underwater swimmer or some bullshit like that even though his counselor wasn’t allowing Tim to show off his skill for fear that Tim would drown himself.

Later on, a female counselor I had become friends with was holding me in the water, and we were making fun of Tim and his obnoxious stories. I don’t remember exactly how it happened, but she dared me to challenge Tim to an underwater, breath-holding contest. I talked to my counselor about it, and he was cool with it as long as I promised the tap his arm when I needed to come up for air.

So we made our way over to Tim and his counselor and I casually asked Tim if he wanted to see who could hold their breath longer underwater. In retrospect, I have absolutely no idea why Tim accepted this challenge, but he did.

Ready, set, go! Both of our counselors plunged us under the water to start the contest.

I kid you not, within 5 seconds I noticed Tim start to freak out underwater. His counselor must have noticed too, because he pulled him up for air right away. Whatever, fuck you Tim. I was going to stay under as long as possible just to make him feel stupid for being such a dick about holding his breath. All of a sudden, from under the water I noticed people scrambling out of the pool. There was obviously something going on, so I tapped my counselor’s arm to come up for air. When he brought me up, I was completely horrified, yet slightly amused. Tim had thrown up in the pool, and was continuing to throw up all over himself as the counselors made a huge deal out of getting him out of the water. This was all too perfect. The vomit started spreading around the pool and everyone was disgusted beyond belief. The camp officials had to cancel swimming for the rest of the day, which upset everyone.

Real smooth Tim.

This incident in the pool made me realize I was never going to get along with other people in wheelchairs, and I know it doesn’t really make sense, but I decided on that day that I prefer hanging out with people that can walk.

Luckily for me, the counselors at the camp soon realized I was slightly different from most of the other kids. We joked around and talked about things that they never would have discussed with the other campers. On the last night of camp, the counselors let me stay up all night with them, just chilling out and eating pizza while the other kids slept. For my 13-year-old mind, that was a pretty awesome experience, and it helped me learn that I had the ability and social skills to make genuine friends in a situation where they could have just been “pretend nice” to me because I was in a wheelchair.

It was about why I don’t like anyone I’ve ever met that uses a wheelchair. While it was funny, it was more of a “joking around with your friends” kind of funny, as opposed to “the entire world could read this, including the people you make fun of” kind of funny. I saved it and might come back to it eventually, but for now I switched gears and am writing a post about how terribly terrible it is when I get sick. It probs won’t be done tonight though because I’m exhausted from physical therapy (just writing this message took 10 minutes because I keep having to stop to rest my hands). Sooooooo I will get it done tomorrow and post it tomorrow night.

In the meantime, why don’t you check out some of my older posts if you’re new to my blog?!

1st Post - This is Probably a Terrible Idea,

How I Broke My Femur,

Handshakes,

A Little About My Brother,

How I Deal With People Staring At Me,

Head Tipping Over,

Girlfriend, Or Lack Thereof,

Basketball Stunt,

Most Awkward Moment Ever,

Crazy Chatroulette Story,

God

Have Fun!

My first experience with alcohol, or getting drunk I should say, is by no means exciting or dramatic, but considering the fact that I weigh as much as the average seven-year-old, the story can at least be described as interesting.

It was New Year’s Eve and I was 18 years old. My best friend and cousin, Becca, was on winter break from Pitt, and we were trying to spend as much time together as possible since we wouldn’t see each other again until after the spring semester. We decided that we were going to spend New Year’s Eve together, and attempt to get me shwasted for the first time in my life. Normally, Becca would go out and party with her other friends on New Year’s, and I would spend the night shoveling ungodly amounts of pork-fried rice into my tiny stomach with my family.

You see, my disease makes drinking, or participating in any illegal or frowned upon activity, a complicated matter.  I rely on other people to take care of me, mainly my parents. So if I were going to stay out and drink, I would eventually have to call one of them to come get me, not to mention one of them would have to help me go to the bathroom and get into bed. Basically, it would be impossible to hide my drunkenness from them. Some of you might be thinking, so what, my parents know I drink and they don’t care? My parents are not your parents, and they have a justified reason to not want me drinking; it’s really unsafe.

I, however, had reached a point in my life on that New Year’s Eve where I did not really care how dangerous drinking might be for someone of my condition. It seemed silly for me to go through life constantly making cautious decisions to avoid getting in trouble or hurting my body. You only have one life to live, mind as well make the most of it.

But please don’t get the impression that I was approaching this night by throwing all caution to the wind. I firmly believed that if I acted smart and responsible about drinking, everything would be absolutely fine. There was a small voice in the back of my head saying, “Remember, you are far from indestructible, and it would be just plain stupid to throw away a great life for one night of fun.” I had no idea how much alcohol my liver could handle, and I wasn’t about to test its limits.

We decided it would probably be easiest to enact Operation Get Shane Drunk at Becca’s house, and that I would just sleep there to avoid confronting my parents while I was slizzard. The only shitty part about this plan is that sleeping over at other people’s houses is kind of not very comfortable for me. Unless my brother is with me, I usually sleep in my chair so that I don’t need to call anyone during the night to roll me from side to side. My chair is comfortable to sit in, as for sleeping… not so much. It does have a recline feature, but it is far from desired. Also, I can’t really go to the bathroom at other people’s houses, again unless my brother is there who knows how to do all that fun stuff. I wish I had considered all this before we decided to spend the night at her house.

Becca and I stopped by our grandfather’s house before we went to her house, because some of our extended family was in the area and they were having a New Year’s party. Around 10pm we said goodbye and told everyone that Becca was having a couple people over to her house, which wasn’t a complete lie; one of our other friends did join us for the festivities. As we left the party, my dad and our uncles came outside with us and reminded us to be smart about whatever we chose to do that night. I was surprised by the apparent fact that my dad was cool with me getting drunk as long as I wasn’t stupid.

An adult who shall remain anonymous bought us a box of Franzia, which might be the classiest adult beverage of all time. We weren’t trying to impress anyone.

When we got to Becca’s house, the movie 300 was on TV, so we played a game where every time we felt intimidated by a character in the movie, we took a drink. Becca had to help me tip the cup to my mouth because the awkwardly shaped wine glass did not work well in my awkwardly shaped hands. After I finished my first full glass, I didn’t feel any effects of the alcohol and we started discussing the possibility that my SMA made me some kind of super-human alcohol tank. Then I had another glass.

All of a sudden I was drunk. It was awesome. I felt so light and my muscles didn’t feel as tight as they usually do. Our other friend showed up. He and Becca continued downing glasses of the delicious Franzia, while I practiced driving in straight lines around the room, which was impossible.  We laughed a lot, mostly at me, and all in all it was a great time.

However, we didn’t quite plan the whole night out as much as we should have. Around 3am, Becca and the other kid we invited were absolutely smashed. They both wandered off to different parts of the house and passed out. I realized I was now alone downstairs, not drunk enough to pass out, and with only my phone to keep me occupied. I tried to sleep, but like I said, my chair is not very comfortable. Also, when I do sleep in my chair, I am usually very close to other people that I can wake up if my head gets stuck or I become way to uncomfortable. Becca was two staircases above me and our other friend was nowhere to be found. (I later found out he had passed out in the guest bedroom, which was right next to the room I was in, so I could have gotten him if I needed to.) Anyway, at the time I felt totally alone and didn’t want to fall asleep for fear I’d wake up in pain and be unable to get someone’s help. 

I literally sat there and played games on my phone until it died. That was around 4:30am. After that, I just sat there and tried to relax until somebody woke up. Not fun.

To my surprise and delight, Becca and her mom both got up around 7am. Becca came downstairs to get a drink because she was feeling really sick. I explained that I had yet to fall asleep and even though I acted like it was all good, her mom heard me talking and suggested they run me home so I could sleep. I say “they” because Becca had to drive my accessible van, and her mom had to follow us to bring Becca back home. Needless to say we were all grumpy, and in retrospect Becca probably wasn’t in the best condition to be driving me home. On the way home Becca and I started joking about the previous night. I found a video on my phone that I had forgotten about; it was just of me, sitting in my chair, with my head bobbing in all directions and a huge smile on my face. We laughed really hard.

I got home and woke up my dad, who was surprised by how early I was home. He didn’t ask questions, but I told him about my night and he laughed a little. I went to bed. My memory foam never felt so good.

Overall, that New Year’s Eve was fun, but could have been a lot better if we had planned ahead.

When I was in 11th grade, I signed up for dual-enrollment classes at the local community college. I had to take two placement tests, reading and writing, before they would let me sign up for Intro to Psychology, and I was very nervous because these were COLLEGE placement tests and I was only in 11th grade. I went to take the tests, and was awe-struck by how easy they were.

Here is a sample question from the test:

Which sentence uses a period correctly?

A. I. Like. To. Eat. Pizza…

B. I like to eat pizza.

C. Pick B

D. Seriously, B is the correct answer and you should pick it.

I finished the tests and printed out the results; I got a 100% on the writing and a 98% on the reading because the story about salmon migration patterns made me want to break the testing computer with my face.

Then, I had to take the test results to an old woman at her desk on the other side of the room so she could review my scores and tell me if I could sign up for the class I wanted. I drove over and awkwardly handed her the paper because I can’t really hand people things; I just kind of push them off my lap. She took it and said to me as if I was a toddler that had just used an adult toilet for the first time, “Ok honey let’s see how you did.”

Her face instantly changed to astonishment and she literally said, “WOW, I didn’t expect this!”

“Uhh what?” was my reply. Was she joking? The salmon I read about could have passed those tests.

Then she realized how rude she had sounded and quickly added, “We just don’t usually get scores like this! Congratulations!” Again, it felt like she was congratulating me for pooping by myself.

I know my body looks fucked up, but I honestly feel like there is no physical indication that would lead people to think I’m retarded, and scenarios like the above are funny, but incredibly annoying.

If I ever get famous I am going to try to change the assumptions most people have about people in wheelchairs.