by Shane Burcaw
As the nurse held the needle a few inches above my thigh, she said to start talking, and this is what frantically came out of my mouth:
“Hut 1! Hut 2! Hike! Culpepper drops back and the defense is blitzing! He runs to the ahhhh (shot stabs my thigh) to the left and he is about to get tackled! (as the nurse starts pushing the medicine in, the volume of my voice increases significantly and becomes hysterical, to the point where I am basically screaming) CULPEPPER THROWS A HAIL MARY TO RANDY MOSS WHO IS RUNNING DOWN THE SIDELINE! MOSS DIVES AND CATCHES THE BALL WITH ONE HAND! HE STAYED INBOUNDS! TOUCHDOWN!!!”
I can only imagine what other people in the office must have thought when they heard me screaming football commentary at the top of my lungs. Oddly enough, it did help me deal with the pain, and so yelling out narration of random football plays became my method for dealing with RSV shots. I kid you not; I used this same method every month for probably three years.
Eventually, yelling football commentary in the doctor’s office started to feel embarrassing as well. Go figure. I also developed a higher pain tolerance around the same time and suddenly RSV shots were not nearly as frightening. Culpepper’s miraculous plays were no longer needed to deal with the pain.
I received RSV shots like a big boy for two more years until our insurance company decided to stop paying for them. Their reasoning was that RSV shots are only scientifically proven to be effective on children under the age of two. When we questioned why they had been paying for them for the last seven years, they subtly conceded that they had made a mistake and offered to pay for the shots for one more year.
I’ve had RSV only one since I stopped receiving the immunizations, and although it resulted in a four-day hospital stay, I was able to fight it off. Knowing that I am unprotected from the risk of RSV almost makes me miss the shots.
Not.
chapter 7
little baby sauerkraut
I was hospitalized a number of times throughout my childhood for pneumonia. Since my lungs have always been pretty shitty at being lungs, they often had trouble clearing mucus from my airways. Most people with SMA eventually die from complications related to lung disease, so every illness I faced as a child was, in reality, a life or death situation. Even today, at twenty-one years old, I’m terrified of going to the hospital because of my unshakable certainty that I will someday die there.
The worst of my early childhood hospitalizations came the winter before my third birthday. This hospital stay was a big moment for a very different reason. One night during my two-week hospitalization, my parents told me that I was soon going to have a baby brother. I was covered in wires and heart monitors, pricked with a painful IV, and barely able to breathe, but suddenly I felt energized and alive. Not even pneumonia could damper my excitement.
“What do you want to name him?” they asked me, forgetting that by this point in my life, sarcasm and humor were already deeply ingrained into my personality.
“Sauerkraut!” I said with a nonchalance that drove both of them into hysterics, earning us some rude glances from other parents of sick children in the large hospital room.
It’s a tough call, but I think I’m just a little cuter. Andrew and me.
Several months later, I beamed with pride as I held Andrew “Sauerkraut” Burcaw in my arms for the first time. I was immediately more in love with him than my tiny little mind could even comprehend. He was my little brother, and I was going to teach him everything I knew about everything. He was going to be amazing at sports, and I was going to teach him about them. He was going to play video games with me. We were going to be best friends. I was perfectly confident in all of this, and I turned out to be right.
I should mention that everything I know about the process of my diagnosis and early childhood is completely based on the stories my parents have told me. Like everyone else, I have little memory of the first few years of my life. There’s a chance that they are lying to me and I do not have SMA. Maybe one of them accidentally dropped me down a flight of stairs as an infant, and they decided it would be easier to create this elaborate story than own up to their failures as parents. My entire life could be a hoax. The Illuminati are possibly, if not definitely, involved (Do you think my book will sell more copies now that I can include Illuminati as a keyword for the Amazon listing?). I will never know.
chapter 8
andrew is a dead man
“How do you remain so positive?”
People ask me this a lot. The origins of my positive nature can be attributed to learning to handle adversity as a young kid. My whole family will tell you that I was always a happy child, constantly looking for the next source of entertainment, never allowing my wheelchair to get in the way of having fun. Still, I’m human and humans get upset sometimes, especially during childhood.
The earliest memory I have of feeling completely devastated and overwhelmed with negative emotions took place when I was probably six or seven years old. One of my favorite things to do as a child was play Nintendo 64. Whenever my best friend and I weren’t outside playing cops and robbers, we were sitting in my living room with our minds completely absorbed in a game of Banjo-Kazooie. Can we all just agree that Gruntilda is the worst?
Anyway, if my memory serves me correctly, there was a particular day during the summer when my best friend was away, so I spent most of the day playing Nintendo 64 by myself. I played a bunch of games besides Banjo-Kazooie, such as GoldenEye 007 (which I was never very good at because I couldn’t reach the button that was used to fire your gun and that turned out to be a pretty crucial aspect of the game), Mario 64, and Star Wars: Shadows of the Empire (God, I was so lame).
Whatever game I was playing I remember being totally immersed in the storyline when my brother came into the room. Andrew was only three or four at the time, and his favorite thing to do back then was annoy me. Actually, that’s still one of his favorite things. I don’t remember why, but baby Andrew had a pair of scissors that day, and as soon as he saw how far along in the game I was, he decided it would be funny to pretend to cut the wire that went from the controller to the game console. I screamed at him to stop as he taunted me; I’d never gotten this far in the game and I was fairly confident that if he accidentally snipped the controller wire, it would destroy not only my Nintendo, but also all of the electricity in our house and maybe even the world.
Needless to say I became frantic and enraged as he continued to pretend to cut the wire. Then, in what I still consider to be one of the most traumatic experiences of my life, pretend snipping became REAL snipping in the blink of an eye. Andrew accidentally cut the wire just enough to make the Nintendo shut off. My unsaved game was gone forever. I instantly lost my mind.
The waterfalls of tears that rapidly ensued were completely uncontrollable, basically involuntary. My life was over. I sat there screaming and crying and screaming and crying until Mom came down from upstairs to see what was wrong. When she walked in the room, I choked back my tears and glared into her eyes as fiercely as I could.
“Andrew is a dead man,” was all I said in a confident voice.
Mom apparently didn’t understand the gravity of the situation, because her response was laughter. The tears returned when she was obviously much more concerned about Andrew having scissors than the tiny fact that my life was ruined forever.
I spent the next few hours that day crying my eyes out, sulking about the fact that I would probably never be able to get that far in the game ever again. However, at some point, it occurred to me that no matter how much I cried, or how sorry I felt for myself, my game was never going to come back. I realized that I just needed to accept what had happened and move on. I was wasting a beautiful summer day by sitting inside being sad about what happened.
In my life today, I try to approach problems similarly to the way I learned how to handle the Nintendo situation (with less crying, of course). First, I try to assess whether a particular problem warrants getting upset about. To do this, I ask myself a
simple question: In ten years, will my life be irreparably and negatively changed because of this problem? If the answer is no, which it usually is, I immediately force myself to stop worrying about the problem. Some examples of problems that fall under this category in my mind include: failing a test, having to do chores around the house, losing any kind of game in sports, breaking up with a girlfriend or boyfriend, getting grounded, falling out of a wheelchair and breaking your femur, etc. The list goes on and on, but the point I’m trying to make to you is that, in my opinion, most everyday problems are not really worth getting upset about.
If, however, I evaluate a problem and decide that it really is a big deal, I move to step two of what I will call my method for dealing with problems. Look at me; I have a method. In my life, most of the problems that fall into this category have to do with my disease. Some examples include: realizing my arms are a lot weaker than they were a year ago, thinking about my long-term future, and being unable to do things because of my wheelchair. These are problems that, no matter how you look at them, just plain old suck—a lot. But therein lay the key to step two of my method. As long as I’m not thinking about these problems, they can’t bring me down, so I simply don’t think about them! It’s not rocket science. There’s nothing I can do to solve any of those above-mentioned problems, so what good will come from spending my time being sad about them?
Instead, I focus my mind and energy on doing things that make me happy like laughing, joking, eating, and spending time with friends. The more I think about it, the more I realize that there really is no other way to live.
My method for dealing with problems might not work for everyone, but for me, positivity and happiness are always possible. Always.
My family used to have an old wine bottle with a cork in the top that we called the Crabby Jar. Whenever my brother or I became whiny, as little kids are prone to do, Mom would pull out the Crabby Jar. This jar was magical, because it held all of the Crabbies we had ever put into it. Mom would pull the cork out, we would quickly blow out our Crabbies, and she would quickly jam the cork back so no Crabbies could escape. Once we completed this ritual, there was no physical way to remain angry or sad, since we had literally dispelled the source of those negative emotions into the jar. The underlying idea behind the Crabby Jar is a pretty good indication of the values that my parents stressed. You are in control of your emotions; the choice to be happy is as easy as blowing out your Crabbies.
chapter 9
spine breaking
When I began kindergarten, there was no debate about whether I would be in a normal classroom. I have to thank my parents for not being too protective. Sometimes, parents of children with physical disabilities feel like they need to shelter their kids from the horror of being bullied or the difficulty of functioning in a regular classroom environment. My parents had thus far raised me to understand that my wheelchair did not define me. Sure, my arms and legs didn’t work, but my brain, personality, and ability to interact with people were not at all affected. Placing me into normal classes was only natural in their eyes.
Shortly after beginning kindergarten, my teacher suggested that I be tested for advanced placement. This consisted of doing a few mental puzzles that I didn’t even realize were the actual test until my parents explained to me later that I would be starting a once a week class for gifted students. It still amazes me that they determined I was gifted just because I knew my colors and shapes pretty well. I think I cheated the system. Or maybe they just felt bad that I was in a wheelchair.
Much of early elementary school is a blur. I made a few friends. I generally enjoyed learning and doing homework. I got excellent report cards, but I hated reading. I can only speak in generalizations about the first few years of elementary school because I just don’t remember many specifics. At that time in my life, I began having significant problem with my spine, which culminated in a massive spinal fusion surgery in second grade. Perhaps the intensity of that situation has overshadowed or destroyed the “boring” memories of going to school.
Since my muscles had been slowly deteriorating from the time when I was a little kid, my spine started to curve when I was very young. Basically, the muscles in my trunk, including the muscles that surround my spine, were not strong enough to keep my spine straight. Scoliosis (curvature of the spine) is prevalent among people with my disease.
When it came to scoliosis, my spine was an asshole. Refusing to take its time and gradually curve like most spines affected by scoliosis, my spine wanted to curve as fast as it possibly could. When I went to my yearly checkup at DuPont Hospital in Delaware at the age of six, my doctors were extremely alarmed by how curved my back was becoming. I sat with a ridiculous slouch because I had to compensate for the twisting of my spine in order to hold my head up. When normal people have scoliosis, it’s usually only a few degrees of curvature. Here’s a picture of me before the surgery. It’s tough to see, but notice the Quasimodo protrusion on my back? That’s my spine attempting to free itself from my body.
Nothing cures scoliosis like a big bowl of ice cream. Mom, Dad, Andrew, and me.
At that yearly checkup, my doctors calmly explained to my parents that the back brace I had been wearing for a few years was failing about as hard as a back brace can fail. You might notice that the top part of my spine in the picture appears to be intruding on the right lung’s personal space zone. My spine was slamming into my right ribcage with as much force as it could muster. The doctors told us that was why I kept getting pneumonia, and that if we didn’t do the spinal fusion surgery soon, my lung would collapse, and basically, I would not be alive too much longer after that. The weird thing about my doctors is they never said, “You need to do this or you will die,” but even at the age of six, I remember feeling the gravity of their words and understanding I needed the surgery.
Great! So I had the surgery and everything was peachy and that was the end of it!
Nope.
Spinal fusion surgery is the second most dangerous surgical procedure (If you are a medical professional and would like to dispute this point, kindly send your concerns to 2145 I Don’t Care Rd., Idiot, PA,. 18017), next to brain surgery, and the doctors made it apparent that there was no guarantee I would thrive after the procedure (read: he might die during the surgery). As you probably know, the spine is a pretty vital part of the human body; it surrounds the precious spinal cord and is surrounded by all of the body’s major organs. In a complete spinal fusion surgery, the surgeon cuts the back open from the neck to the tailbone, bends the spine back into a straight line with brute force, and then nails a metal rod to the spine to keep it straight. All in all, the surgery takes eight to nine hours. Sounds fun, right?
The doctors assured us that although there was a big risk, they had done this surgery plenty of times and were confident they could perform it successfully on me. We chose to go through with the surgery; it was scheduled for September. My little seven-year-old mind was completely terrified.
I do not remember much about the day of the surgery because of the shit-ton of anesthesia they gave me. But I do remember lying in a bed watching Sesame Street while they started the IV to knock me out and being mad because I was too old for Sesame Street.
The surgery went as planned and I did, in fact, not die on the operating table. My parents had a little scare when my surgeon walked out into the waiting room about fifteen minutes into the surgery, much too soon for the surgery to be finished. He handed them a cup with one of my teeth in it. Apparently, he had removed it because it was loose and I could have choked on it if the tubes that were shoved down my throat knocked it out.
The earliest thing I remember after the surgery is waking up in a bed and being in a pretty decent amount of pain. I was on my side, and a nurse came in to roll me. I thought I was going to die from the lightning bolts of fire that shot through my back when she moved me even the slightest bit. I didn’t want to move ever again. Unfortunately, doctors came in my room shortly after that
and cold-heartedly told me I needed to poop so they could make sure my intestines were not damaged. I started crying when they explained that a few nurses would lift me on to the toilet. They didn’t understand how much pain I was in just lying there, and they wanted to pick me up and put all that pressure on my back? I must have passed out because I remember them lifting me and screaming at the top of my lungs, but I don’t remember sitting on the toilet or pooping.
Sexy.
My recovery in the hospital was a three-week process. Early on I shared a room with a boy who was about my age. He had been in a severe car accident and his brain was permanently damaged. The nurses told me he had to learn how to do everything over again—eating, talking, walking—and that he would never fully recover. This was the first time I realized I was lucky compared to some people, and although I didn’t fully understand it at the time, I told my dad that I was thankful I only had SMA because it must be so difficult for that kid to relearn how to live.
One day, I was practicing driving my wheelchair down the hospital hallway, (because the surgery had greatly altered the way I sat in my chair) when I passed by a dark, dreary room with a cage-like crib that contained a little boy who was fast asleep among the wires keeping him alive. There were no balloons or people or stuffed animals in this hospital room, which was the complete opposite of my room. I asked one of my nurses and she told me that he was very sick and didn’t have any family to visit him or bring him balloons. For the duration of my stay at the hospital, my room was filled with friends and family and a constantly replenishing supply of gift baskets, food, toys, and more balloons than I knew what to do with. This little boy had none of that, but the lack of any people in his room scared me the most. Later that day, I asked my nurse to take some of my balloons and give them to the boy without any family.
