Laughing at My Nightmare (5 page)

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.

On the day I was allowed to leave the hospital, I went outside and drove to where my van was parked. When the ramp was unfolded I began to realize something was not right. I drove up the ramp and stopped just before entering the van; my head was too high for me to get in without hitting it on the ceiling. By straightening my spine, the doctors had stretched out my body a solid five inches. I had to ride the entire hour home with my head tipped to the side, which felt just spectacular on my still very sore back.

Elementary school proceeded normally after my spinal fusion. I was assigned a full-time aide starting in second grade. She was a motherly figure who sat next to me in class and provided physical assistance whenever I needed it. After two years of maturation, I began to realize the negative impact she was having on my social life. My peers didn’t want to hang out with Shane and his aide; adults were dumb and they yelled at us for cursing.

Today, the metal rod is completely surrounded by my spine, and I only have moderate scoliosis, which is why I look like I’m leaning over in my pictures. (It was impossible to make it completely straight because of how bad it was before.) I have only had pneumonia a handful of times since the surgery, and I am still alive and kicking, so I will mark it as a win for me. Also, I have a super-cool scar that runs the entire length of my back.

Around fourth grade I made my first best friend at school. His name was Eddie, and he quickly made a distinction that many other kids were unable to make; I was separate from my wheelchair and all of its implications. Eddie valued my sense of humor and appreciated that I had to do things a little differently, probably because Eddie was a little different himself.

Eddie was a skateboarder. At a time when other kids were joining baseball and football teams, Eddie spent his time honing his skills on his custom-made Element skateboard. I became obsessively hooked. Skateboarding promoted an alternative, anti-establishment lifestyle. Skaters wore different clothing, thought differently, and most of all, didn’t care if the rest of the world thought they were odd. That’s exactly what they wanted.

First, I got rid of my aide. The skater mindset taught me that I didn’t need the help of adults; I was supposed to resent it. Eddie sat next to me in every class, so I convinced my parents that he could help me just as well as the aide. Although my motives for favoring the assistance of a close friend were not exactly angelic, it was the beginning of an important and healthy trend in my life; making friendships based on the mutual understanding that I needed physical help and would rely on them for it from time to time.

I also grew my hair out, a staple of the skater lifestyle, and begged my parents to buy my clothes from only the local skate shop. The fact that I couldn’t walk never felt like a reason why I couldn’t be a skateboarder. When questioned about my style, usually by adults, I simply responded, “If I could walk, I would skateboard. Besides that, I’m a skateboarder in every other way.”

I held onto the skater identity for an embarrassingly long time, well past seventh grade.

The worst part is that I made Mom spend at least fifteen minutes making it look “perfect” every morning.

chapter 10

a halloween debacle

When I was ten years old, probably in second or third grade, for whatever odd reason, my elementary school was asked to walk in the Bethlehem Halloween parade. I don’t really understand why we participated, because it’s not like we had a marching band or anything that made us special. Our teacher just told us that we should all dress up as what we wanted to be when we grow up and arrive at the beginning of the parade with our parents on Saturday morning.

Bethlehem is home to approximately 70,000 people, so it’s a pretty sizable town. Our yearly Halloween parade is far from a big deal for most people, but I would estimate that a few thousand people line the sidewalks of Main Street to watch it each year. My family had taken my brother and me to watch the parade in years past, with the highlight always being the candy that people in the parade threw to the onlookers. I was excited to be the one with the power to throw candy to whomever I wanted this year.

But first, I had to figure out what I wanted to be when I grew up and how to incorporate this idea into a costume that involved my chair. Costumes that incorporate a wheelchair are a lot more difficult to make than you might think. People always suggest that I should be a car or a tank, and just plop a big, painted box over my head and wheelchair, but I’ve tried this, and the box inevitably slips out of position and falls on top of my joystick, causing my wheelchair to spaz the hell out and crash into groups of young children at top speed. Therefore, most years I have opted to dress up as something that only loosely involves my chair. Here are some examples for you to laugh at: