in its truest form,
has little to do with actual comfort,
and everything to do
with having someone
to share your discomfort with.
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.
Tell me what you think! Not sure how I feel about it yet.
My cat Roxy caught a baby blue jay last night,
despite being fed a gourmet spread
served on a platter, finely shredded.
She mauled the mangled mass of
bright blue feathers dripping dark red;
almost not alive, yet not completely dead.
Desperately chirping with a broken beak,
feeling its skin pulled apart
by claws and teeth,
Deserted on the doormat to die,
the pulverized pulp of the once baby bird,
searched for answers with its one remaining eye.
Then it stopped breathing and I
could have helped, but didn’t even try;
too consumed by images of my own demise.
Roxy and I are a lot alike I find;
I don’t care for the taste of blood,
but I can be ruthless from time to time.
You shouldn’t be surprised. Putting it simply (because I’m an English major and don’t have the scientific knowledge to put it any other way), the human body is held together by a framework of muscles and bones. SMA is a muscle wasting disease, which you should know by now basically just means my muscles are shitty at doing anything that muscles are supposed to do, and they’re constantly getting shittier. Don’t believe me? Since I started this blog 16 months ago, I’ve lost the ability to lift my hands any higher than mouth. When my nose or eyes or forehead itches, which seems to be all the fucking time now that I can’t reach those spots, I have to ask someone for a fork or a straw which I use to relieve the itch. Yes, it looks weird, but it’s better than constantly asking other people to itch my face for me. Anyway, my muscles, a large part of my framework, suck.
Another side effect of having shitty muscles is having shitty bones. If you’re not aware, bones that don’t bear weight for long periods of time become extremely weak and easy to break. My doctors tried to delay this process as much as possible when I was a little kid by making me use a “stander.” The stander was a torture device that held my body in a faux-standing position (like a fauxhawk, but different). My legs could never support the entire weight of my body, but the idea was that if I used the stander every day, forcing my legs to bear at least some weight, my bones would strengthen and not become as weak later on in life. However, 5-year-old Shane did not appreciate this logic and thought of the stander only as another way for his therapists to hurt him. I avoided the stander as much as possible and eventually my muscles and bones became so weak that standing in the stander became too painful to bear. I’ve been either sitting or lying down ever since, bearing almost no weight, and this has caused my bones to become pretty weak over the last 20 years.
We now understand why I’m fragile. However, I’m guessing it’s difficult to conceptualize how fragile (or how not fragile) I actually am. I don’t want you to think that flicking my arm will cause a compound fracture, but punching it with any amount of force might. If we ever meet in person, please don’t punch me.
To give you a better idea of my fragility, here are some things that would probably break me:
I suppose you can think of me as a toddler, in terms of how easily broken I am. (Are toddlers easily broken?)
My fragility is not, however, the only point of this post. Instead, I’d like to tell you about a recent event in my life when I legitimately feared for my safety because of my fragility. Let’s begin.
Several weeks ago my good friend Lily surprised me with an awesome phone call: “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”
I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my non-disabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.
In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was speaking in the basketball gym at Moravian, a smaller-ish building that does not have a built in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.
I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”
“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.
SMA does not cause seizures; I’ve never had one in my life, but toss out the word seizure next time you’re trying to get something from a person of authority and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.
While waiting in line to get in to Johnston Hall, secret service agents approached us and instructed “my companion” and I to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him. Spoiler alert: I’m not a terrorist; that’s not where I’m going with this story.
The gym was packed to capacity. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit it’s 1000 degrees in here,” and “Where the hell am I supposed to sit?”
Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.
(In noisy places, surrounded by people who’s heads are generally 2-3 feet above mine, it’s easy to feel small and insignificant. Even when screaming at the top of my lungs, I don’t have the lung capacity to be very loud. I’ve grown accustomed to not having much of a voice at loud, public events. I rely on facial expressions and the voices of my companions to communicate with other people.)
A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She motioned to follow her and led us down a narrow path created by a rope barrier along the edge of the gym.
When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.
Someone off the my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this isn’t the first time this awkward situation has arisen so I didn’t let it get to me.
A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.
I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and it ultimately was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.
Shane, not to be rude, but why the fuck did you start this story by telling us how fragile you are?
Calm down, agitated reader, I’m getting there.
Fast forward a few hours, the speech was pretty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it too. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who spent a majority of the speech yelling “DOWN IN FRONT,” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon in the making. In front of me sat a very old man who read a very graphic war novel and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans. One of them was black, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.
Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.
When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and JUMPED out of her chair. I kid you not, she literally leapt out of that fucking wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards Michelle.
This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.
To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.
Clearly I did. Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way. She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.
Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obama’s probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.
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!
To all of my new followers, if you are unaware of my upcoming feeding tube surgery that is scheduled to take place this coming Tuesday the 13th, read this, this, and this.
For everyone else, as you know I was supposed to get a feeding tube last summer, because I weigh less than most 8-year-olds, but a week before the surgery, my surgeon decided the procedure was too risky. There is a chance my weak lungs could collapse when they take me off the breathing tube that is inserted to keep me alive during the surgery. Awesome.
So, for the past year, while my doctors have been debating what the best course of action is, I have been drinking these super-high-caloric milkshakes like it is my fucking job, in hopes of gaining some weight so I can put off this independence-crushing, not to mention dangerous surgery.
Well, I failed miserably. In fact, when I went to see my main doctor last month, I had lost 6 pounds since last year, bringing my weight to a whopping 46 pounds. My doctors, my family, and I all reluctantly accepted that I needing to have the feeding tube surgery, despite the obnoxious risk that it might kill me.
I was assured that my doctors and surgeon were all on the same page, and my new pulmonologist wrote me a very convincing email explaining that he firmly believed, based on my life history and uncommonly high lung-function test scores, that I would have no problem coming off the breathing tube. I slowly accepted that a feeding tube was going to be a part of my future, and convinced myself that I would get through the surgery just fine.
Tomorrow, my dad and I will be driving to Delaware to meet with my surgeon, since the surgery is only a week away. This is the same surgeon who told me not to get this procedure last year, so it will be interesting to discuss why he changed his mind.
This trip tomorrow is weighing pretty heavy on my mind right now; I don’t expect to get much sleep tonight, because the outcome of the meeting is going to greatly determine my attitude towards the surgery. If I get a sense that he is still even a little hesitant about doing the procedure, I’m going to be a mental basketcase for the following week. It’s terrible, but I strongly believe that’s what will end up happening tomorrow.
Either way, I am at peace with having to get a feeding tube. It’s going to be different, and gross, and unsightly, but who gives a fuck? Nobody sees my stomach for the most part, unless I’m wearing one of my sexy belly shirts, so it won’t be a big deal.
I will update you guys tomorrow about how it goes!
Afterthought: If something crazy happens during the surgery, like I slip into a year-long coma for instance, it will definitely help me sell more books down the road. Maybe I should be aiming for coma, or perhaps I’ll get lucky and they’ll cut my leg off or something. Sometimes you have to make sacrifices to be successful hahahaha.
By now you know that I only weigh about 50 pounds, which is about 22.7 kg for all of you who use the silly metric system. If you are having a tough time visualizing a 50-pound, 19-year-old, go back a few pages and look at some of my pictures (the one with the traffic cone on my head shows my weight the best). If you don’t feel like doing that, just imagine Gollum from Lord of the Rings, or Dobby from Harry Potter; my body has similar characteristics of their bodies. I know I must look insanely malnourished because little kids tend to ask me what is wrong with my arms before they ask about the wheelchair. However, I am not malnourished at all. I eat three meals a day, with snacks in between, and still my body just refuses to pack on the pounds. Let me explain…
The most I ever weighed was 63 pounds, which was back in 11th grade. Then I broke my femur and had to stay in a hospital bed for three weeks because I couldn’t sit in my chair with the unnecessarily huge cast they put on my entire right leg. During this time it was really difficult to eat; you should begin to notice that doing anything outside the perfectly situated supports of my wheelchair is very difficult, actually, impossible. I couldn’t safely chew and swallow food while lying propped up in the hospital bed. My mom started grinding up my food in a blender to make it easier to chew, which was absolutely disgusting, especially the ground up McDonald’s cheeseburgers. I just threw up in my mouth thinking about it.
Needless to say I lost some weight during those obnoxious weeks while I was stuck in bed. I might have gained some weight back once I was recovered, but then in my senior year of high school, I got sick during Thanksgiving break and remained sick straight through until Christmas. A few days after Christmas I gave in and allowed my parents to take me to the hospital because I pretty much couldn’t breathe. I was admitted with pneumonia, but once again God/Luck/Fate/Science/Life was on my side and I got better and was released four days later. Unfortunately, I lost eight or nine more pounds during this time, taking me down to about 47 pounds. Not good.
When I went to my yearly checkups that spring at DuPont Hospital, my doctors were not at all happy with my weight. One of my doctors showed me a graph of my weight distributed over time, speaking to me like a child and explaining that the sudden drop off in weight was not a good thing. “What do you think we need to do about this?” she said in a patronizing voice that made me want to throw myself out of my chair. “….I don’t know, I’ll just try harder to eat more I guess,” I desperately said, as I began to feel the tears welling up in my eyes; I knew what was coming next.
“I think it’s time we think about a feeding tube. You’re going to need one eventually. We need to do the surgery while you’re healthy, before it’s too late.” The condescending tone of her voice made this statement about 1000 times worse.
I have never openly cried in front of other people since I was a little kid, but it felt like my whole life was crashing down on top of me. Everything was happening too fast; I was about to graduate high school. The last thing I needed was a huge, life-changing surgery that would effectively change the way I had to live. My doctors and the interns that follow the doctors into every room stood there in silent, awkward disbelief and watched as I put my head down and let the flow of tears fall on to my lap. The thought of having a hole in my stomach and being attached to a bag of nutritional formula every night was the ultimate symbol of losing the fight against my disease, at least in my mind. I couldn’t formulate a single rational thought, all I could think was “NO, I don’t need a feeding tube, not yet.”
I felt like the world’s biggest pussy, and there was a really hot intern in the room, which made it all the more embarrassing. Almost immediately I made a decision that crying and bitching was not going to get me anywhere, and as badly as I wanted to scream and never return to that hospital ever again, I calmed myself and listened to the doctors as they explained the feeding tube procedure and what we had to do to get it scheduled before I started college.
We scheduled the surgery for the middle of the summer. Meanwhile, I tried to gain weight on my own, reasoning that if I could show my doctors that I could get fat by myself, I could delay the surgery a while longer. I found these super-caloric milkshake mixes called ScandiShakes that could only be ordered online for a very expensive price. My family and friends and the people at my church generously rallied behind this idea of mine and helped my parents purchase a bunch of cases. I started drinking two of these 800-calorie milkshakes a day. ScandiShakes are extremely thick and make me want to kill myself every time I finish one, but they are also pretty legit; I gained about three pounds using these shakes, but to my dismay, it was not enough weight to put off the feeding tube.
People always ask me why I don’t just eat more. I wish it were that easy. If you read my post about my jaw muscles getting raped by my disease, you will understand that I get tired after only a few minutes of chewing these days. I have to use actual energy to chew, so when I eat, my body is burning calories faster than I can shovel it in. I began to accept that the ScandiShakes were not going to be a miracle solution, and after having some discussions with my friends and family, I came to peace with the fact that a feeding tube was in my best interest.
TO BE CONTINUED…
I write shitty poetry when I get sad/frustrated/angry. I’ll share some of them with you, they’re kind of embarrassing. This one is the earliest one I saved (like a year ago):
The darkness is suffocating at night
sifting through my mind
making sense of these feelings
this is a losing fight
Endless hours pass away
people think that I’m insane
but the first time I heard her voice
I knew I’d never be the same
This will never work
too many obstacles stand in our path
my brain knows it but I laugh
cause there’s no way in hell my heart is believing that
I want to scream but reality makes the air thick
and I’m known for my ability to be optimistic
Who gives a fuck what is right
she screams my name
and this won’t be the last time
cause these dreams haunt me every night
the sun continues to rise
People stare at me… real hard. Whenever I am out in public it is pretty much a guarantee that at least a few people will make it completely obvious that they have never seen someone like me before. By “someone like me” I mean an alien-like pterodactyl creature with a human head that uses a wheelchair. Ok, that was a slight exaggeration, but I must look awfully messed up for some of the looks I receive.
My arms and legs are slightly fatter than a hot dog and slightly skinnier than a fat piece of sausage (I have no idea why I chose that comparison… yes I do, I’m hungry). Also, my elbows and wrists are extremely atrophied; they look exactly like Tyrannosaurus Rex arms when I hold them against my chest. I am a few inches shy of 5 feet, and when I sit in my chair, it seems like I am even shorter, not midget short, just super short. Also, my head is normal human size, which looks ridiculously funny/creepy sitting on top of my fucked up, tiny body. Of the several times I have gone on chatroulette.com with my friends, the first reaction people always have is to ask why my head is so big. Imagine me as a bobblehead doll… in a wheelchair. I don’t even blame people for staring; if I were them, I would probably stare at me too.
Over the years I have gone through many methods for dealing with people that stare at me. When I was younger, I used to make scary faces at other little kids who were mesmerized by my chair. I got the biggest kick out of watching their faces change from awe and wonder to uneasiness and fright; I was only 8 years old. During middle school I went through a stage where the constant stares really got under my skin. I remember doing things like approaching people who stared at me to ask them what they were looking at, pretending to cry to make an onlooker feel like an asshole, and outright lying to people who had the balls to ask me questions about my disability. I would tell people that I was in a car accident that killed my whole family and other messed up stuff along the same lines. I was young and stupid and didn’t know how to handle my situation.
When high school rolled around I started to realize that life was what you made of it and stopped worrying so much about what other people thought about my disability. I began using my disease to make people laugh, something I still love to do today. In 9th grade I ran for class president and had to give a speech to the 600 kids in my class to persuade them to vote for me. Up to this point in my life, only my close group of friends knew that I was a completely normal person that happened to be in a wheelchair. Everyone else assumed that my wheelchair meant I was socially inept or something along those lines. Anyway, I wanted to start high school by making people aware that I was not either of those things. The following is an exact copy of the speech I gave on election day. I don’t know why I still have this saved:
“sup im shane. i like to skate, i run track and field and i am on the freshman swimming team. at least…. i was until the accident.. anyway my buddy called me and told me a tsunami was about to hit and wipe out all humanity. so i decided to grab my surf board. holy hell was that a mistake. while on a 75 foot wave i crashed into a cement wall. it is still unknown how and why there was a cement wall in the middle of the ocean, but that is not an important detail. when i awoke 4 years later from my coma, i was informed that i would never be able to walk again. i became a better man because of it. and in case you are a stupid person, the entire previous section is completely fictional. but for real i am in a wheel chair and if you decide to judge me for it, i will not hesitate to run you over untill I’m sure you’ve stopped breathing. Vote for me!”
People went crazy and I won the election by a landslide.
You are all going to get tired of me repeating this, but I think it is really important to understand; life will only be as fun as you make it!
My birthday was last weekend and my friend invited me to go to a non-professional, arena football game that he had free tickets for. Arena football is stupid to begin with, but when you add the fact that most of the players in this league were sub-par players from shitty community colleges, the final product is laughably terrible. The tickets that he had gotten for free usually sell for $21. I cannot wrap my brain around what would make someone pay $21 whole fucking dollars to attend this poor excuse for a sporting event.
We, meaning my two best friends and I, actually had a great time at the game. Watching a bunch of wannabe NFL players slam each other into unforgiving walls is rather entertaining, especially when they’re bad at it. However, by the end of the 3rd quarter the game had lost is novelty and we decided to leave. Apparently, the other 7 people in attendance felt the same way, because there were some people gathered by the main doors to the arena as we walked out.
I say walked out because it’s easier than saying “my friends walked and I drove my wheelchair out.” Anyway, it’s important to note that my friends were walking side by side and I was driving right behind them as we approached the stadium doors. The doors to the building are the really heavy metal kind that take a generous amount of strength to open and close hard enough to kill a small child. To describe the situation that unfolded simply, my friends either forgot I was behind them or forgot that I can’t do normal things like hold huge metal doors open, because they carelessly walked out without stopping to hold it open for me. The huge metal door unleashed its fury on the side of my chair, as I realized they weren’t going to hold it and I didn’t have time to get their attention.
The incident made a really loud noise, like… very loud. Both my friends frantically turned around as they realized what they had both just forgotten and saw me, stuck in the door, laughing hysterically. My friends apologized to me even though I wasn’t the least bit mad, and then issued a louder, more generalized apology to everyone who had just witnessed two inconsiderate teens not hold a door for a kid in a wheelchair. None of us could stop laughing.
I will most likely be dead before I turn 30. Even that estimate is a generous one. I have a disease called Spinal Muscular Atrophy (Type 2) that has been slowly destroying all the muscles in my body for the last 18 years, 11 months, and 354 days. Eventually I will catch a cold, it will turn into pneumonia, and my body won’t be able to fight it off, at least that’s what all my doctors subliminally imply every time they tell me I’m lucky to have stayed out of the hospital for almost a year now. Look at that, you already know my deepest fear, the one that hits me like a train every single night when I’m trying to fall asleep; I don’t know how much longer I have to live. We’re practically dating.
To be honest, I’m not as upset about my circumstances as I maybe should be. Not that being sad all the time would be the best way for me to live my life either, but I’m genuinely happy 99.9% of the time, which gives me a slightly distorted view of reality that causes me to forget the fact that I am in a wheelchair and need to do mostly everything a little bit differently than everyone else. For instance, I love sleeping, it’s one of my favorite things, but about a year ago my stupid doctors ordered that I start using a bi-pap to help me breathe while I sleep. My basic response after trying the machine for one night was “fuck that, I’d rather die in my sleep than have to wear that every night” and I haven’t used it since. I’m probably being ignorant.
And yet, I don’t want to die, not today, not tomorrow, not ever. I love being alive. Besides doing some things differently, I pretty much live a normal life. I have a great family and the coolest friends in the world, I go out and do things, like drink, (I only weigh 50 lbs so drinking gets interesting, but more on that at another time) go to concerts, hangout, pretty much anything a normal almost-19-year-old does. I just finished my first year of college; I am study journalism and psychology at a local liberal arts college.
Living life from the seat of my powered wheelchair has allowed me to develop a pretty unique perspective on life, one that I hope to share with all of you! I hope at the very least that someone out there enjoys what I have to say. I can promise you this much; it will be real, it will be blunt, it will be sad, it will be funny, and it will be an adventure!