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.
The fact that I am disabled is deeply ingrained in my mind. Everything I do, every funny, awkward, unusual, and annoying event in my life—even boring daily routines like brushing my teeth—is affected by my disability. Living this way for 20 years has made me almost numb to it. When I’m lying on my bed, peeing into a jar, staring at the ceiling while I relieve myself, I’m not thinking, “This is an odd way to go to the bathroom compared to able-bodied people, what a peculiar result of my disability.”
I’m just going to the bathroom, probably not thinking about anything.
Obviously, I’m aware of all the ways my disability makes my life abnormal. If I weren’t, this blog would just be pictures of kittens, and Justin Bieber, and GIFs of Tyler the Creator laughing, and more pictures of Justin Bieber. But I’ve never truly taken the time to consider how my disability has helped shape my identity.
I’ve been working on a project lately that has unintentionally forced me to think about my own disability identity. In this post, I’m going to attempt to make sense of what I’ve been learning about disability identities, and subsequently, what I have learned about myself along the way.
As I mentioned a few months ago, one of the psychology professors at Moravian College, Dr. Dunn, asked me to work with him over the summer to compose an article on disability identity. I agreed immediately even though I admittedly know very little about psychology. Dr. Dunn has written an immense amount of work and done numerous studies in the psychological field of disability, so I figured it would be a learning experience for me. It was.
At its most basic level, for someone with a disability, disability identity involves feeling positively about oneself as an individual and identifying with the disability community as a whole. For our project, we wanted to look a little deeper and develop a model that identifies the most prevalent themes in all disability identities. To do this, we surveyed (or, are surveying, since we are still working on it) a variety of narratives published by people with disabilities of all types. This style of research allowed us to pinpoint recurring themes that are experienced by many or all people with disabilities.
We’ve identified six major themes that are encompassed in the identities of most people with disabilities: affirmation of disability, communal attachment, self-worth, pride, discrimination, and personal meaning (Dunn & Burcaw, 2012, in progress).
As I read these stories by other people with disabilities, I couldn’t help but to consider how each of these themes plays a part in my identity. Here is my reflection on a few of those themes.
Affirmation of disability
What it means: The belief that living with one’s own disability is a valuable experience that contributes to a positive personal identity.
On the surface, I believe that I possess this characteristic. Living with SMA has opened a world of opportunities for me, and you only have to read a few of my stories to know that I genuinely enjoy the fuck out of life. The list of amazing occurrences that were byproducts of my disability is incredibly long. Until a few years ago, one of the movie theaters in Bethlehem allowed people in wheelchairs to watch movies for free. I guess their logic was that it would take a miracle for us to make it out of our houses more than a few times a year, so if we happened to overcome all the odds and make it to the theater alive, we should be rewarded with a free movie. Obviously, I abused the free movie privilege so much that I wouldn’t be surprised if their reason for eventually revoking the policy was, “that asshole kid in the wheelchair who saw a movie every other day for three years.”
However, as I read more about affirmation of disability, I found a small caveat that I could not agree with. In a study of people with disabilities, it was found that many of them were strongly opposed to receiving any type of treatment that might cure them of their disability. Granted, this is not to say that one must choose to not be cured in order to have a positive affirmation of their disability, but I was baffled by the results of this study.
Sure, growing up with my disease has substantially influenced the person I turned out to be, but given the hypothetical opportunity, there is no question in my mind that I would choose to be cured. My identity and personality would not suddenly vanish just because I’d be able to walk and run and kick people in the face. Yes, I love my life, but I would be lying if I said that I’d choose to stick out the fight with SMA if I didn’t have to. That’s not like… cowardly, is it?
What it means: A desire to affiliate oneself with the disability community as a whole, a preference to associate with other people with disabilities.
If you read my story about muscular dystrophy summer camp, you’ll remember that I generally don’t enjoy hanging out with other people in wheelchairs. It may be because I developed an aversion at a young age and never gave myself a chance to get to know anyone that uses a wheelchair. It may also be that I’m not around people in wheelchairs very often in everyday life. It may be that I see everything I dislike about myself in other wheelchair people, so I avoid them to protect my self-esteem. It may be that I’m just a terrible person. In that regard, I do not possess particularly strong feelings of communal attachment.
I do, however, realize that I am a part of the disability community, and that we have a lot in common. We all face the difficulties of living in a world that is still far from being handicapped accessible. When I see a restaurant that has one fucking step to get into the front door, I don’t get angry because I personally can’t eat there, but rather, at the fact that the owners could be so ignorant. They might as well hang a sign on the front door that says No Wheelchairs Allowed. I’m looking at you, Subway.
What it means: The idea that one values oneself, in regard to one’s ability to perform tasks that are deemed important by the individual, others, or society (Dunn & Burcaw, 2012, in progress).
Let’s be honest, there are just some things that I will not accomplish in my lifetime. I’ll probably never win the MLB home run derby, and chances are I’m not going to break any Olympic records. I will never tie my own shoes or wipe my own butt. I will never be able to drive a car, or a boat, or a plane. I’m pretty sure I will never become the President of the United States.
Society values all of those things.
But I will make you laugh, and I will go to school and get a degree, and I will do awesome things with my friends, and I will do stupid things with my friends, and I will try my hardest to make my nonprofit succeed, and I will get my book published someday, and I will kick your ass in FIFA, and I will get a real job, and I will live life with intense passion, and I will make you laugh, and laugh, and laugh.
And that’s what I value.
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.
As winter begins to approach each year, I start getting nervous about the inevitable cold I’m going to catch in the upcoming months. My level of anxiety increases dramatically, although you’d never notice it, and the fear of getting sick makes itself a nice little nest in the back of my mind, where it lives until summer returns to scare it away. Every winter, there comes a day when I wake up on a cold, dark morning to go to class, and notice a tiny pain in the back of my throat. The rest of my day is consumed by paying ridiculously close attention to any other symptoms that develop, as I try to convince myself I’m not getting sick. Sometimes it works, and the sore throat turns out to be nothing more than a sore throat, but occasionally it turns into a fever, and that’s when I begin to silently lose my cool.
Fevers are one of my biggest enemies. I hate them. To me, a fever is just a heads up that my little sore throat or head cold has made its way to my lungs, and then shit gets real serious, real fast. You see, the most common cause of death for people with SMA is lung infection, aka pneumonia. Granted, having a fever does not always mean I have pneumonia, but for me it means I have phlegm in my lungs, which is just a step away from pneumonia. Being aware that pneumonia is probably going to be the death of me makes each fever I get all the more terrifying. Every time I get a fever it’s like I’m walking (or rolling) into a battle for my life.
I have been extremely lucky so far in my life, in that I don’t get sick very often, and when I have been sick, I’ve been able to fight it off and fully recover each time.
The last time I was extremely sick, to the point where I feared for my life, was between Thanksgiving and New Year’s Eve of my senior year in high school. I came down with a case of bronchitis, which is great when you have the lung strength of a 4-year-old. Just when I thought I had gotten over the bronchitis, a week before Christmas, I got a whole bunch sicker than I was before (it turned out to be RSV, which is like pneumonia). Instead of describing what those few weeks were like on my own, I am going to share something that my dad wrote during that horrible period of my life.
He called this story “Strength” and it brilliantly illuminates what life is like when I’m sick.
Sleep has eluded us both for the last 3 nights. His eyes want to shut and rest, but the cough won’t let them close. Rasping, wheezing comes between each coughing breath. His twisted chest and lifeless limbs shudder with each gasp. Tonight, he has asked to be repositioned more times than I can count.
No rest for the weary. In a garbled whisper he asks, “Dad can you give me a treatment?”
“Sure buddy. I’ll have to carry you to the living room where your machines are though. It’s quieter there too.”
Three nights of relentless coughing has left him drained and has me searching for strength to go on. Somehow.
So I uncovered him and carried him from his bedroom to the living room love seat.
Once lying on the love seat he asks, “Can you hold the mouthpiece in place for me? Sorry, my hands are too weak to do it.”
“Don’t you ever apologize for that. Of course I will hold the mouthpiece for you.”
I readied the breathing machine and threw a blanket on him. Then I pulled up a chair and threw a blanket over myself. I placed the breathing treatment mouthpiece into his mouth and turned on the machine. His eyes closed as he inhaled the medicine. His face contorted as he coughed through the mouthpiece. Suffering.
I felt a drop land on my forearm. A tear. In the darkness, the routine, the fatigue, I couldn’t feel the streak of wet on my own face. I closed my eyes.
Let him breathe.
If someone must feel this, let it be me.
Please set him free.
Give me the strength to see him through.
Please God. Please.
In the middle of the darkest night, there we were. Father, son, and God suffering together.
The treatment ended and the house was quiet once again. The cough continued passed the end, as I knew it would. He lay there laboring. I can’t tell if he’s better or worse off than when we started. I picked him up and carried him back to his bedroom and I put him back in his bed. I move his head, legs, arms, body, and pillow as he instructs, waiting for the next instruction and he mumbles something I can’t understand…
“What’s that, Buddy?”
And he says again,
“Thank you, Dad.”
There I was… looking for strength for him, for me. And there it was, coming from him.
God indeed works in strange and mysterious ways.”
As you can see, once an illness reaches my lungs it becomes very difficult to get rid of. I don’t have the lung capacity or strength to effectively cough shit out of my lungs, so I resort to painfully long periods of semi-effective coughing to get the tiniest bit of phlegm up into my throat so I can swallow or spit it.
I usually swallow my phlegm, because when I try to spit, I end up drooling all over myself, in case you were wondering.
The sleepless, cough-filled nights that my dad wrote about, became cough-filled days on Christmas Eve and Christmas Day. It was bad. My parents kept asking me if I needed to go to the hospital, but as you might know from reading older posts, I view the hospital as a place where people go to die. Accepting that I am too sick to get better by myself is accepting that I might die, and you’d be surprised by how difficult this makes the decision to go to the hospital.
On December 26th, I woke up very early in the morning and literally could not breathe. I sucked in as hard as I could, but instead of oxygen, all I got was a big mass of liquid phlegm gurgling in my trachea. Immediately I panicked and somehow got my parents’ attention. I probably sounded like I was under water when they heard me. There was just too much phlegm in my airway. Each breath was extremely difficult; it felt exactly like trying to breathe into a paper bag. I needed air or I was going to pass out, so I signaled for my mom to roll me onto my other side.
Now you need to try to understand something for me; I have been in this situation in the past. I have had so much phlegm that I can barely breathe, and rolling to my other side ALWAYS shifts the phlegm enough to open my airway just a tiny bit, allowing me to get that amazing inhalation of fresh air needed to clear the rest of the phlegm. It’s kind of my go-to move when I am overwhelmed by phlegm.
Not this time. When I realized the roll had failed to move the phlegm, I lost my mind and began to cry. I was going to die. I just didn’t know what to do and everything was happening too fast and I really wanted to breathe and I really wished I had a normal life. All of those emotions hit me at once, with my bubbling gasps for air filling up the rest of the room. If you have ever had or been around someone who has had a severe asthma attack, you can compare the sounds of an asthma attack to the sounds I was making. If you want to have an even better understanding of how it felt and sounded, jump into a pool, sink to the bottom, and then try to breathe. No, don’t do that.
In my state of complete panic and total desperation for air, I got my mom to sit me in my chair, thinking this might jostle the phlegm into a better position. Using all the strength I could fucking muster, I sat there, doubled over, and coughed as hard as I could. Still no air.
As fast as my sickly Pterodactyl arms could move, I drove my chair to the living room and got my mom to help me start using my Cough-Assist machine. At this point it was pretty much like I was just holding my breath.
You might be thinking, “Wait… you have a machine that helps you cough? Why didn’t you just use it right away?!” The answer is because it doesn’t usually help me. The Cough-Assist is designed to push a large amount of air into my lungs all at once, and then help me suck all that air back out real fast. Therefore, when my airway is completely blocked with phlegm, all the machine does is push air against that chunk of phlegm, and nothing really happens.
Anyway, I tried coughing to the rhythm of the machine, while my mom held the mask to my face. It wasn’t working, and in the whirlwind of thoughts that were rushing through my head, I heard my dad on the phone, making arrangements with the hospital to have me admitted.
Just when I was on the edge of giving up, and I hate to think about what would have happened if I had, the phlegm moved!
I whipped my head back, away from the mask, and inhaled the greatest breath of air I’ve ever taken. The phlegm was nowhere near gone, but there was now an opening for air to get through.
I sat back, allowed my mom to wipe my eyes, and just enjoyed the fresh air. Nothing else mattered; it was just me, my lungs, and beautiful, beautiful air.
The hospital admitted me later that same day, with no argument from me. I just wanted to get better. In my next post I will tell you about the following four days in the hospital.
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.