by Shane Burcaw
In a moment that still seems unreal to me to this day, I drove my chair at top speed (ten miles an hour) towards the ball, but as I made contact, my front right wheel drove up over the ball due to its softness. My chair lurched to the side with a violence that I had never felt in all my years of driving. I lost sense of everything as my body was thrown out of my chair and came crashing down to the tennis court below. Blackness.
I opened my eyes and regained focus from a position that I did not often find myself in. Sprawled in a crumpled mess of atrophied body parts and blood, which was coming from my head, I began to make sense of where I was and what had just happened. I was lying on my side on the rough concrete of the tennis court, in a position pretty similar to how I lie in bed. I laughed uncontrollably as the absurdity of the situation set in, coupled with the delightful realization that I was alive. The laughter faded when I noticed Mr. Kremus sprinting towards me in sheer panic. He was probably also relieved to discover me conscious and alive. I laughed again when he screamed for one of the cheerleaders to go to get help.
“Honestly, I really think I’m okay. What the hell happened? I guess I probably should have put my straps on. No, no, no. You don’t need get anyone. Nothing hurts that bad, except for my head a little bit,” I told him, more concerned with avoiding the embarrassment of having more people see me in this vulnerable position than proceeding cautiously.
“Oh my God! Are you okay? Yeah, your head is bleeding. I don’t really want to move you in case your back is injured. Oh my God. I think we should call an ambulance,” Mr. Kremus said.
“I’m seriously fine,” I said, starting to get frustrated, “I have a metal rod in my back, so I don’t really think it can break. Can you please just roll me onto my back? This concrete is killing my side.” In the distance I saw one of the security guards running towards the tennis courts with the girl who had gone for help. Great, more hoopla.
Dramatic reenactment.
Then the fun began. After arguing with my gym teacher and the security guard for a few minutes, I was able to convince them to lift me back into my chair. Quite possibly the biggest mistake of my life. As Mr. Kremus lifted my legs to maneuver me onto my back, a sharp pain shot through my right knee and radiated throughout the rest of my body. The first step to rolling me is sliding one hand under my knees. When he did this, it caused my legs to move approximately an inch, rising from the pavement to accommodate his hand sliding beneath them. This movement, the absolute slightest of fucking movements, hurt so badly that I shrieked. Literally shrieked. I can’t even describe the sound I made in human words because the letters needed to create them have not been invented yet.
He frantically slid his hand out from under my knees, sending them plummeting from their inch of elevation to the pavement below. Another incomprehensible screech. I gathered myself and said, “I’m fine. I think I might have pulled a muscle in my right knee. Can you just pick me up from my side and put me back in my chair?” I’m an idiot. But apparently I’m a convincing idiot because Mr. Kremus and the security guard only argued with me for several more minutes before agreeing to lift me back into my chair.
Spoiler alert: it was much more than a pulled muscle. My right femur was snapped in half just above my knee. I discovered that broken femurs don’t support weight very well when the two adults hoisted me off the pavement using my knees and shoulders as lifting points. I’m not sure if you’ve ever felt the two sides of a broken bone separate from each other, but I would highly recommend it to anyone who would like to guarantee that they will never experience a sicker pain for the rest of their life. For dessert, I had the pleasure of feeling my bones rearrange themselves once again as my body assumed the sitting position of my wheelchair. Refusing to accept there was anything seriously wrong, I once again reassured the adults that I had only sustained a pulled muscle as we made our way to the nurse’s office to get my bleeding forehead examined.
After inspecting the gash on my head and listening in horror to my recounting of the crash, the school nurse got my mom on the phone and strongly suggested we go to the hospital to have me checked. Concussions are apparently a bigger deal than I imagined. Even though the cut on my head did not require stitches, every adult involved in the situation agreed that I needed to be looked at by a doctor just to make sure my brain was intact. I kept the pulsing numbness in my right leg to myself while I waited for my mom to arrive with the van.
Accepting I had seriously injured myself happened on the way to the emergency room. Mom drove over a speed bump on the way out of the parking lot—at an incredibly slow speed, which is how she normally navigates speed bumps due to my neck weakness—and the subsequent jostling doubled me over as my bones grinded against each other inside my leg. Doubling over in agony resulted in an even more intense pain as the weight of my upper body pressed down on my fractured leg. I screamed like a madman. Mom probably thought the concussion test was looking like a great idea. The rest of the drive was a nightmare. I managed to communicate that my right leg was injured and that even the slightest bumps were causing me significant pain, but it just wasn’t practical for her to drive five miles an hour the entire ten miles to the hospital.
The nurses had to cut my jeans off with a pair of scissors in the exam room at the hospital. In between desperate screams to be gentle and stabilize my leg, I warned the nurses—both very attractive—not to be alarmed if my dick was hanging out the bottom of my boxers. It happens. They laughed and then I returned to terrified scream sobbing. Did I mention that I was lying on a hospital bed at this point? No? That’s probably because I’m repressing the memory of being lifted once AGAIN by my shoulders and snapped-in-half-femur leg.
In the X-ray room I finally lost my shit and strangled the technician who picked up my leg to reposition it for a better picture. May she rest in peace. She did not die in vain though; the ER doctor came in a few hours later to happily announce that, thanks to some very nice X-ray images, he was able to easily see that my femur had broken in a “corkscrew” manner just above my right knee. Big surprise. My parents and the ER nurses let out a collective squirm as they suddenly realized why lifting me by my legs had hurt so badly. Unfortunately, vindication doesn’t heal broken bones. Neither does morphine, but it helps. A few minutes after being diagnosed, I floated off into a beautiful, morphine-induced dreamland.
I spent the next five days in the hospital. When my femur broke, the upper half of the bone shifted itself up and over the smaller segment that remained attached to my knee. Basically, the two pieces of bone collapsed over each other, shortening my upper leg significantly. After a series of arguments, many of which I was too zonked on morphine to comprehend, my doctors decided that my tiny, brittle, SMA bones could not support the stress of screws to correct the fracture. Instead, they reasoned, they would put me under anesthesia, set the bone as best they could, cast it, and hope for the best. Great. Whatever. Do that. Just give me more morphine.
Their plan failed. I woke up to a doctor apologizing to my parents, which, when you think about it, is never something you really want to wake up to. Apparently my bones didn’t cooperate and they were unable to set them, so they decided to cast my leg as it was, a clusterfuck of mangled bones that was three inches shorter than my left leg. Upon hearing this I became aware of a massive bulge under my blankets. They had to cast me from hip to ankle, he explained, since the position of the break and my weak bones made my leg extremely fragile. A full leg cast was needed to keep the bones still during the healing process. He told me I would need to stay off of it, sitting included, for about a month. Fuck me sideways with a toaster. By this point I had been bedridden for two days—sleeping most of that time—and was already driving myself crazy with boredom due to my incapacitation. I wouldn’t survive a month in bed.
I did.
A disabled kid who is stuck in bed all day is about as boring as it sounds. I watched a lot of television. My friends and family kept my spirits high with lots of visits, many of which
were rather awkward considering the enormous cast and delicate leg made it impossible for me to wear pants or underwear. Really though, the moment that stands out to me the most from my time in recuperation, was pooping in a bedpan for the first time.
My parents gently rolled me onto my side, lifted my hips a few inches, and slid the bedpan (which was basically just a plate) underneath the unloading zone. I pushed. As my bowel movement came out, it pretty quickly reached the plate beneath me, but there was still a lot more left inside of me, which presented a dilemma. Should I chop it off and start a new log or keep going with the one I had? I opted to forge onward. As more came out, I felt the log coiling itself up on the plate. It had been a while since the last time I’d gone to the bathroom. This magnificent spectacle was taking place behind me, so I couldn’t really see it, but I imagined that I was creating a perfectly little coiled up snake of a poop. It made all the pain I had endured entirely worth it, as did my dad’s reaction when he came back in the room to find the cobra I had left for him.
chapter 23
drowning
It must have happened gradually, but at some point in high school, my right lung started to give up. I discovered this at a routine check up in eleventh grade when the pulmonologist gave me a concerned look after listening with his stethoscope. “I hear some crackling, but nothing out of the ordinary for a partially collapsed middle lobe,” he said with a nonchalance that confused me. What did that mean? Lungs should not be collapsed. They should be open and full of air and happiness. “Just means you might have some more phlegm buildup, so you’ll have to be really careful about staying healthy,” he said.
Winter was approaching, and my body was seriously worn down from the recent adventure with femur breaking. I worried I would get sick and be unable to fight it off. A collapsed lung? I could barely clear phlegm with fully functioning lungs, and now I might have to do so with only one good lung?
If worrying was an antidote, I might have gotten off unscathed that winter, but unfortunately, as I well knew, worrying didn’t do much besides stress me out. A few days before Thanksgiving, I woke up with a tiny scratch in the back of my throat. My family and I went into Sickness Prevention Overdrive—bathing in gallons of Tylenol, sucking down copious amounts of breathing treatment mist, and performing constant chest percussion therapy (basically someone just smacks my chest for twenty minutes to loosen up the phlegm in my lungs. It’s lovely).
Accidently put cocaine in my breathing machine
The last-minute precautions failed, and the sore throat blossomed into a full-fledged case of bronchitis, a terrible illness for someone with my limited lung capacity. I wheezed my way through Thanksgiving dinner, barely able to hold my head up as my body was exhausted from the nonstop coughing. My airway felt like a pinhole, clogged with so much phlegm that breathing became the only activity I could handle.
My parents kept asking if I needed to go to the hospital, but I viewed the hospital as a place where people went to die. Accepting that I was too sick to get better by myself was accepting that I might die, and you’d be surprised by how difficult that made the decision.
Cough-drenched, sleepless nights and energy-draining days continued into December. The day after Christmas, I woke up very early in the morning and literally couldn’t 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 miraculously got my parents’ attention with gargled cries for help. I probably sounded like I was drowning when they heard me. There was just too much phlegm in my airway. I needed air or I was going to pass out, so I signaled for Mom to roll me onto my other side.
I had been in this situation in the past. There were rare occasions before this when phlegm made it impossible to breathe, and rolling to my other side always shifted the mucus 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 it. 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 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 want to have a better understanding of how that 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 Mom to sit me in my chair, thinking this might jostle the phlegm into a manageable position. My parents are masters of remaining calm in situations like this. Using all the strength I could muster, I 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 Dad to hook me to the Cough-Assist machine. At this point it was pretty much like I was just holding my breath.
Wait … you have a machine that helps you cough? Why didn’t you just use it right away?
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 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. I tried coughing to the rhythm of the machine, while Mom smashed the mask into my face to create an airtight seal. 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 an opening for just enough to get through and replenish my lungs. I collapsed back, allowed Mom to wipe my eyes, and simply relished in the influx of fresh air. Nothing else mattered; it was just me, my lungs, and the beautiful, beautiful air.
chapter 24
marbles in my mouth
In my senior year of high school, I was in an honors English class, mostly because I was too lazy to take AP classes, but also because I enjoyed writing—even shitty school essays. We were told on the first day of class that since we were seniors and it was an honors class, we had to do a fifteen-page essay, as well as a ten-minute presentation on a topic that we would derive from a fiction novel. When our teacher announced this assignment, my heart sank because of a new complication I had been having with my disease.
Rewind four years. I am in eighth grade, sitting in the school cafeteria, eating a burrito with my friends. At this point in my life, I had not given any consideration to the idea that my disease would slowly get worse as I got older. My disease is really good at fucking with my brain because it progresses so slowly that it is almost impossible to notice myself getting weaker. In eighth grade, I knew that ten years ago I used to be able to sit in my sandbox and play without anyone holding me up; I knew that I used to be able to roll from one side to another while laying in bed when I was young, but I honestly didn’t feel any weaker in eighth grade than I did in say, fifth or sixth grade. In my naïve, eighth grade mind, I reasoned that if I didn’t feel weaker from one week to the next, I must be staying the same.
Then, about halfway through my burrito that day, my disease abruptly showed up to slap me in the face. One minute I was chewing my burrito, happy as can be, the next I was silently sitting there in utter confusion and terror, as my jaw muscles refused to continue chewing. At first, I thought my jaw had unhinged or something crazy like that, because as hard as I tried I could not get my mouth to move. I motioned for my friend to hand me a napkin to spit out the half-chewed burrito, playing it off to my friends as if something nasty was in that bite. “What the fuck just happened to me?” was all that went thr
ough my head the rest of that school day.
That night at dinner the same thing happened while chewing my cheeseburger, but in order to not freak out in front of my parents, I acted like I was resting my chin on my hands in an awkward way. I noticed that if I pushed up on my chin with my hands, chewing became much easier. All of a sudden it occurred to me; my jaw wasn’t unhinged, but the muscles in my jaw were getting weaker. I was getting worse. Once in a blue moon I lay in bed and think “why me?” as I try to fall asleep. As pathetic as it sounds I usually end up tearing up and hating everything. This was definitely one of those nights.
Fast forward back to twelfth grade, I was using my hands to help myself chew at every meal by then. It became my normal way of eating, and I didn’t think about it much. My friends occasionally imitated me because I look 100 percent ridiculous when I do it.
However, since that day in eighth grade, I had learned that my weakening jaw muscles also affected my ability to talk. I had developed a very slight mumble; my jaw and tongue get too tired to form words perfectly. Most of the time it is totally unnoticeable; once in a while people will ask me to repeat a word or something I say. Annoyingly, it has gotten to the point where I can’t talk nonstop for an extended period of time. I am perfectly able to hold a conversation, where my mouth gets chances to rest while the other person is talking, but when I have to talk without pausing for any amount of time over about five minutes, my words become extremely garbled and are almost impossible to understand. Now you are beginning to see why I was upset about the ten-minute speech requirement; I was physically unable to talk that long.
