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.
As you may or may not know, Jesse, Jon, Pat, and I went to the USA Women’s soccer game vs China in Philly (technically Chester but close enough) on Sunday. The idea for this trip came about after you guys helped me get Alex Morgan’s attention on Twitter. Unfortunately, I never heard back from her after the initial tweet she sent me saying she wanted LAMN, Inc. wristbands for the whole team. Refusing to give up, I bought 4 tickets for the game and we started brainstorming plans to get her the wristbands at the game.
These plans included: Jesse dressing up as a janitor so he could push me into the locker room disguised as a garbage bag, parachuting into the stadium during the game and hand delivering the wristbands to Alex, and our last plan involved me driving onto the field naked, covered only by a pile of wristbands. After we came to terms with reality we decided to have Sarah make us a beautiful sign that would get Alex’s attention. We also planned on screaming at her a lot… in a nice way. Surely she would come over afterwards and take the wristbands.
The hour and a half drive to Philly was spent discussing how to properly handle the potential gravity of the situation if Alex did indeed come over to our section.
When we arrived at the stadium and made our way to our seats, a very friendly usher told us that all the handicapped seats had been moved to the top level of the stadium for this game. Our faces must’ve revealed the crushing disbelief we all suddenly felt because the usher asked if we thought he was joking. At first, I thought he was. The handicap seats at PPL Park are literally front row, about 10 feet from the field. Those seats were a very crucial part in our plan to get Alex’s attention.
The usher was not joking, so we begrudgingly made our way to the top of the stadium.
This is where we were sitting:
With a half hour until game time we sat up in Northern Bumblefuck and debated the next course of action. Suddenly Jesse stood up, announced he had a plan, and left us. A few minutes later we saw him talking to another usher down below where we were originally supposed to be sitting. After that he disappeared from our eyesight for about 20 minutes. Just as we were coming to terms with our Alex plan being a failure, Jesse came back to our seats, literally dancing, saying that we should never doubt him. He waved a piece of paper in my face and announced that he was successful. I’m not going to tell you all the details because there are people out there who might frown upon them, but I will tell you that Jesse did something so brilliant we were praising him for the rest of the night.
This is where we ended up watching the game from:
It was amazing. The US destroyed China 4-1. Go USA!
After the game, when the team stood in the middle of the field to thank the fans, there was a solid 30 seconds when Alex was looking directly at our sign and us screaming and waving at her. The jury is still out among the four of us about whether or not we saw her laugh at us, but that is beside the point. Alex did not come over to us, and I honestly don’t blame her. She probably did not see any of my follow-up tweets, which would explain why I never heard back from her and she did not come talk to us. It was a little depressing, but at the same time I was probably dumb to think everything could have worked out so perfectly.
HOWEVER, and I capitalized it because it’s very important, Megan Rapinoe, who is another well-known player on the team, started to make her way from the center of the field directly towards the four of us. We panicked like a bunch of pre-teens at a Justin Bieber concert, but gathered ourselves when she came up to us. She held out a marker and asked if we wanted anything autographed, which was not at all what we were expecting, so we momentarily became the four most awkward people in the stadium. Jon recovered first and held up the bag of wristbands we had prepared. He explained the whole Alex Morgan Twitter situation and asked if she would mind giving the bag to Alex. Megan graciously accepted and we bombarded her with thank you’s. Pat held out his flip-flop for her to sign. Megan ended up putting the bag down the back of her shorts, which only made the situation 1000 times better.
In the bag was a note that I had addressed to Alex. It explained the nonprofit and thanked her again for accepting the wristbands. I also gave her my cell phone number and e-mail, because you’re not going to NOT give Alex Morgan your number when given the opportunity.
I still haven’t heard anything from the team, but all in all, I believe that Sunday night was a very entertaining success.
My insurance company will cover a new wheelchair every six years. I’m guessing they didn’t just pull that number out of thin air—although it wouldn’t surprise me—but I’m sure there was some research that found a wheelchair’s life expectancy to be about six years. Imagine if that was your job: find out how much damage this wheelchair can take before it falls to pieces. I want that job. But I digress…
I’ve been using the wheelchair I currently have since eighth grade, approximately 6-7 years. For the past few weeks, my parents, as well as my physical therapist, have been nudging me to start the process of getting a new one. Believe it or not, I really don’t like changing wheelchairs. I pretty much hate it. But when I tell people this, it usually takes them some time to understand where I’m coming from. I say the word “new” but they hear the word “better.” However, new is not always better when it comes to a seating arrangement that is such a crucial aspect of my everyday life.
I’m not a bratty 7-year-old though, I realize my chair is getting old and starting to break down more often, and I understand how extraordinarily fucked I’d be if my chair broke permanently before I had a new one. So this past Monday night, we met with someone from the wheelchair company to start the arduous process of getting me a new whip.
There are many reasons that I am so against changing wheelchairs. I’ve come to understand that many of the reasons are difficult to comprehend for the average able-bodied person, and that is the biggest problem; the able-bodied people who assist in the wheelchair selection and customization process have trouble understanding the intricacies of how I sit.
For instance, last time I got a new wheelchair, a big point of contention was the fact that I lean so far to the right and put almost all my body weight on my right rib cage. It’s a completely acceptable thing for the therapists and wheelchair representatives to be concerned about. However, and this is a big however, I physically can’t hold my head up or move my arms if my body is adjusted even several inches to the left. When I explained this to them back when I was 13, they essentially ignored me and played the “We’re specialists so we know better than you” card. It was extremely frustrating, as they lifted me from one chair to the next, while I knew just by looking at each chair that it wasn’t going to work.
They always said things like, “Well maybe if we reclined the chair your body would naturally rest on the backrest rather than your side. Or maybe we should look into a head strap that will hold your head in place since you can’t hold it up when you’re in the proper position.”
I responded, “But I would literally have to be almost fully reclined all the time, and I can’t drive that way, so that wouldn’t work. Also, I definitely do not want a head strap.”
Then came their line that filled me with so much anger that my eyes used to tear up, “Well Shane, we might just have to compromise on this one.”
It felt like they were ignoring everything I said, and to be told that I was going to have to wear a head strap from then on, with no say in the decision, was more belittling than you can imagine.
Similar arguments took place for many aspects of my wheelchair, not just the side support, so you can begin to see how I’ve grown to hate the process so much. The fact is, the specialists were usually wrong. They’ve been telling me since I was four that I’m going to get skin breakdown from leaning on my right elbow all day, and that we should look into a bunch of different methods to take pressure off my elbow, methods that would render my right arm unusable. Every six years I fight them off and somehow convince them that my elbow will be fine. Almost 20 years of leaning on my right elbow have gone by, and guess what, not once have I had any breakdown of the skin.
My wheelchair and all of my quirky positions work for me. I’d prefer not to change that.
With all that being said, this past Monday night went very smoothly. Maybe it’s because I’m over 18 now, maybe I was better able to explain my circumstances this time around, but the wheelchair specialist and my physical therapist both seemed to understand that I want to keep as much the same as possible. We’re ordering the newer model of the same chair, and we’re basically just going to re-create the seating position I currently use. It was a giant relief.
Now for the fun part! With a new wheelchair on the way (a process that will take 4-5 months… stupid insurance) I feel like the proper thing to do is take some time to honor the valiant life of my soon-to-be old wheelchair. We’ve been through a lot together… some fun, some shit, but all worth remembering. So I’ve decided to write a letter to my wheelchair to let her know how I really feel.
The time has come to say goodbye. But before you go, let’s reminisce about all the memories we’ve shared.
There were the countless feet that we have run over together. Most of the time it was an accident, but sometimes we did it on purpose and disguised it as an accident. Other times we ran over feet because people asked us to, not in a fetishy kind of way, more of a, “Run over my foot I want to see if it hur… OH GOD GET OFF GET OFF!”
There was the time we stayed outside in the summer downpour against all reasonable logic, and you broke down for three fucking days. I had to sit in a very old, very uncomfortable, manual wheelchair while you were being repaired. Andrew parked me in the corner and told me I was in timeout probably 100 times during those three days. Without instant Netflix, I probably would have died.
There was the time we were in the car together, not strapped in because we like to live on the edge, and when mom had to slam on the brakes, you rocketed towards the front of the van, since I had also forgotten to turn you off, breaking my big toe as we collided with the drivers seat. It was a learning experience though, we still don’t strap you in, but I at least remember to turn you off.
There was the time you threw me out of the safety of your seat when I ran over a soccer ball with you. The broken femur I suffered put me out of commission for a month. I still kind of hate you for that, but forgiveness is a process.
There were all the times we were an awesome street hockey goalie. Your 450 lbs of steel and brute force, combined with my cat-like reflexes and determination to win made quite an impressive team.
There was the time our road froze over and we had drift races until my entire body was frozen solid.
There were all the times when I used you as an excuse to get out of class early throughout high school. I think teachers are programmed to just say yes whenever someone in a wheelchair asks to do anything. “Mrs. Smith, can I be excused from class now to beat the crowd?”
“Shane, there are 20 minutes left in class.”
“Yeah but my wheelchair…”
“OH OH I’m sorry, yes, go right ahead. Do whatever you have to do. Here are the answers to tomorrow’s test.”
There was the time I missed the birth of my first-born son because I forgot to charge you the night before.
There was the time I burned holes in your controller interface because I wasn’t paying attention while playing with fire.
We have traveled hundreds of miles together. We went through puberty together. We made friends together. We experienced life together. I can never thank you enough for all that you’ve done for me. You will never be replaced. You will never be forgotten.
Unless, of course, my new chair is a lot cooler.
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!
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
I have never had a girlfriend. Not one. There was a brief period in 5th grade when I hung out with the same girl at recess for a few days in a row. She shared her lollipop with me once and I thought things were getting pretty serious; I woke up the next morning with strep throat and that was pretty much the end of that. Romantic, I know.
For most of my life, not having a girlfriend was really no big deal. I didn’t feel like I was missing out on much. I observed from afar as my friends entered and exited relationships during high school that all turned out to mean absolutely nothing. When I think about it, I never even tried to pursue romantic relationships because I was completely confident that no girl would ever want to date me.
Whether my reasoning is flawed or ignorant is up for debate, I still struggle with my own thoughts about this issue, but the fact of the matter is that any girl that would potentially date me would have to take care of me as well.
I can’t drive, so she would always have to drive. I can’t give hugs or hold hands. I probably couldn’t get in her house. I can’t sit anywhere besides my chair. I’m fragile as shit. My hips and knees and elbows and wrists all have very severe contractures, which means when I lay down I am pretty much stuck in one position. I can’t hold my fucking head up sometimes. I can’t even begin to fathom how sex would work. Oh, also the tiny fact that unless a miracle cure is found in the next few years, I’m going to eventually die and that isn’t a turn on for most women. All of these facts are constantly running through my mind whenever I think about having a girlfriend someday. She would have to be a freaking superhero.
At the same time however, mentally and emotionally I am more than capable of being in a relationship, and that is the problem. In my mind I want to believe that I will eventually find someone, but I realize the chances are slim to none.
I don’t even know what to say.
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!
(I feel like I should probably tell you all that I am extremely sarcastic pretty much all of the time, so if you ever read something on my page and think “wow this kid is a bitter douchebag,” chances are I’m just being sarcastic, so please don’t hate me.)
Please don’t ever, under any circumstances, attempt to shake my hand. I know it’s tempting, my severely atrophied arms are really sexy, but literally the only possible outcome of trying to shake my hand is an extremely awkward situation. I will chuckle and say something like, “I uh can’t really… uhh” and you will awkwardly realize that I can’t even extend my arm, let alone shake back, forcing you to pretend that you had meant to pat me on the head all along, like I’m a cute, little, wheelchair puppy.
If this is the first time that you have met me, you will probably assume that I didn’t notice your creative, on the fly problem solving. After all, people in wheelchairs have no social skills. But I did notice, and now all I can think about is how ridiculous it would be if you introduced yourself to everyone by patting their heads.
I know you’re just being nice, but, again, it’s awkward.