Laughing at My Nightmare Page 2

  I started talking in complete sentences at a very young age, a common trait in SMA Type II affected individuals. It makes sense. I probably became aware that communication was vital to getting what I needed. If I couldn’t reach a toy a few inches away from me, all I needed to do was ask someone and they were more than happy to help. This reliance on others began when I was a baby, and has followed me since.

  The real fun began in preschool at the age of three, when I got my first wheelchair. I attended a preschool that specialized in helping the physically and mentally disabled; the only “special” school I’ve ever attended. It ultimately served me well. There was a physical therapy center within the building, and that is where I learned how to drive.

  At first the therapists put me in a small vehicle that looked nothing like a wheelchair. It was basically a box on four wheels. In front of me sat four large arrow buttons, pointing forward, backward, left, and right. I curiously pressed the forward arrow and almost fell over at the unexpected lurch. My eyes lit up as my young mind began to comprehend the independence I suddenly had. Up until this point in my life, movement of any type meant being carried by my parents, or being strapped into the jogging stroller that they used to take me places. I had been conditioned to appreciate my surroundings from wherever I was seated, but now, if I wanted to move left and further inspect the fascinating bug on the wall, all I needed to do was press the left button until I was closer. I felt free.

  This training chair didn’t last long. Therapists use it to teach children the basic concept of using a wheelchair to navigate through the world. A few days later, they brought a real wheelchair for me to try. After strapping me securely in place, the therapists explained that instead of directional buttons, I would now use the joystick that sat in front of me to control my movement. This would allow me to have 360 degrees of control of my chair’s direction. And, the therapists said, this wheelchair was a lot faster, so I needed to be careful.

  Less than twenty seconds later, I had smashed full speed into the padded wall on the opposite side of the therapy room. The therapists gasped. I cracked up laughing.

  I was reprimanded for putting myself and other people in danger. How was hitting a padded wall dangerous, I asked. This question earned me a stern speech on maturity and responsibility, two values I had to learn at a young age. Clearly though, they didn’t understand that I was in complete control the entire time. I wanted to hit the wall. In fact, crashing into the padded walls of my preschool became one of my favorite activities. I’ve always been a bit of a thrill-seeker.

  Three months later, I was offered a contract by the Phillies. Nana Jean and I playing baseball in her front yard.

  Luckily my parents had a good medical insurance policy that covered the cost of a motorized wheelchair, and the therapists at my preschool were able to convince the insurance company that I needed one for independence at such a young age. I had my own wheelchair a few months later. From that day on, I spent almost every waking hour in the seat of that ridiculously expensive ($28,000) little vehicle.

  My family—which now included a little brother named Andrew—and I lived on a quiet street in Bethlehem for the first eight years of my life. Maple Street was lined with towering maple trees that created a tunnel of shade during the summer. Along either side of the road were several town houses. Our home was brick and had a cozy, covered front porch with a baby swing that my dad would push me in to break up the constant wheelchair routine. We didn’t have much of a front yard, and the moderately sized backyard was mostly taken up by the winding wooden wheelchair ramp that my dad built so I didn’t have to sleep outside. For my brother, our friends, and I, the front sidewalk and back alley became the primary places to play. My enjoyment of wall-smashing quickly turned to sports once my brother was old enough to play them, which was about two days after he began walking.

  chapter 4

  whoops!

  On a humid July day when I was six, instead of racing around outside with my neighbors, I was sitting on the toilet, strapped into my specially adapted backrest, quietly weeping at my ridiculous situation. What was wrong with me? On my bare lap sat our house phone, waiting for me to gather the nerves to call my neighbor, Ben.

  A few hours before I found myself crying on the toilet, Ben and I had been spending the day the same way we spent every day of our summers, playing cops and robbers, cowboys and Indians, and other crazy games of our young imaginations. On that particular day we were constructing an epic volcano in Ben’s backyard sandbox. By “we” I really mean Ben. Sitting in the sandbox was difficult for me at this point in my life, so I sat above in my wheelchair and played the role of bossy friend who wants to help but can’t sit in the sand.

  “The left side needs more sand.”

  “Careful you’re gonna wreck it.”

  “You should try to dig a moat around the outside.”

  “Oh my God! Move, move, move! I just saw a huge pincher bug by your foot!”

  The pincher bug I spotted quickly destroyed our desire to finish the sand volcano, even though Ben’s mom was going to allow us to make it erupt with vinegar and baking soda. Instead, we spent the next hour spraying stuff (mostly each other) with Ben’s garden hose. It was around this time, after drinking copious amounts of water from the hose, when I noticed that I needed to pee.

  In my preschool school days, I viewed going to the bathroom as nothing but a nuisance. During the summer, going to the bathroom meant stopping whatever awesome game Ben and I were playing, returning to my house, having my mom carry me upstairs, undressing, using the toilet, redressing, being carried back downstairs, and finding Ben again. The whole process probably took twenty minutes, but that’s a lot of time to a six-year-old. For this reason I chose to ignore my bladder on most summer days, holding my urine until it became painful and then some.

  The “full bladder pain” became noticeable while we were playing with the hose, but I put it out of my mind when Ben’s mom brought out a new Super Soaker to play with. This would be a great weapon to use in our next bank heist.

  Half an hour later, as we quietly crept around the back of the bank that we were robbing (our neighbor’s shed) with our fully loaded Super Soaker, I began to sweat. My breathing became rapid and shallow. This was not a nervous reaction to the felony we were committing, but rather my body trying to tell me that I was going to explode if I didn’t pee soon. But you don’t just go to the bathroom in the middle of stealing one billion dollars from the most highly guarded bank in the entire world.

  A life of crime does terrible things to people. Left to right: Myself, childhood best friend Ben, his brother Harry, my brother Andrew.

  When the bank guards open fired with their machine guns, Ben leapt behind a birdbath and fired back at the windows of the shed. It was the climax of the heist. Ben desperately shouted for me to run in for the money while he covered me, but I couldn’t pretend anymore. I couldn’t even move. A small trickle of urine forced its way out of my body and I lost control.

  I closed my eyes and basked in the orgasmic feeling of my painfully swelled bladder emptying. Nothing on earth mattered. Not the fact that I was peeing in my pants. Not the fact that I was doing so three feet away from my best friend. Not the fact that I was in the middle of my neighbor’s back yard. Not the fact that halfway through the emptying I was sitting in a warm puddle. Not the fact that six-year-olds don’t pee in their pants. Not the fact that it was running down my legs into my shoes and socks. Not the fact that my mom was going to kill me. Not even the fact that Ben had been shot by the guards and was now lying dead next to me.

  “I’ll be right back.” I said nervously as I finished peeing and started for my house. I didn’t think Ben noticed what had just happened, and keeping it that way suddenly became my biggest priority. He’d obviously never treat me the same way if he knew I was a baby that peed his pants. I was entirely convinced that he would associate me peeing in my pants with me being in a wheelchair and he wouldn’t want to
be my friend anymore.

  I dialed Ben’s house number through watery eyes from the seat of the toilet. His number was the only phone number besides our own that I knew by heart, probably from calling it every morning to find out when he could come outside to play. As it rang I gritted my teeth and tried unsuccessfully to stop my hyperventilating breaths. I hated my mom for making me do this. She had reacted exactly how I had expected her to when I arrived home. Lots of yelling about how I needed to learn to stop what I was doing when I had to go to the bathroom. Playing is not more important than taking care of your body, blah, blah, blah.

  When she asked if I still needed to go more, I lied and said that I did, making the brilliant reasoning in my six-year-old brain that she would not be as mad if she knew that I had at least been able to somewhat control my bladder. She was. My chair was literally dripping with piss.

  After strapping me onto the toilet, she handed me the phone and said, “Call Ben and tell him why you are not allowed back outside today.” I stared at her in horror, knowing she had already made up her mind.

  Ben’s mom answered the phone, “Hello?”

  “Hi … is Ben there?” I sheepishly asked. I felt like she knew.

  “I’ll go find him. I thought you guys were outside…”

  “Hello?” It was Ben.

  “Hey Ben,” I started crying again, glancing to make sure my mom wasn’t in the bathroom, “Ummm … I can’t come back out to play.”

  “Aww, man! Why not?” he moaned.

  “Well I was really, really sweaty when I got inside, and (huff, huff, huff) my underwear and shorts and wheelchair were like wet from the sweat, but my mom thought it was pee so she grounded me. She thinks I peed in my pants.” I lied, still extremely embarrassed by the fake story I was telling him.

  “Oh … darn. Okay, well can you play tomorrow?”

  We did play the next day, but before we tried to rob the bank again, I went back to my house to get ammo and body armor (and to use the bathroom).

  Wheelchairs also make great getaway vehicles. Ben riding on the back of my wheelchair.

  chapter 5

  helplessness is a real bitch

  One of my biggest fears has always been not knowing how much longer I have to live. My fear of death is more of a long-term, always-in-the-back-of-my-mind type of fear and usually does not largely affect me on a day-to-day basis. I have another fear though, and it toys with my mind almost every day, or night I should say. This fear is completely unjustified, slightly embarrassing, but very real. I am terrified of being stranded in my bed.

  I can’t do much of anything on my own, including getting in and out of my bed. Every night, someone in my family lifts me out of my wheelchair and puts me in my bed. I am so weak that once I lie down, I rely on other people to move my body and limbs into comfortable positions. Once I am in a sleep-worthy position, usually on my left side, curled up like a baby, the family member that helped me with the transfer turns off my lights and leaves my room. This is when my brain starts to run wild.

  If I ever become uncomfortable or need to roll to my other side during the night, I have to yell loud enough to wake someone up so they can come help me. This reliance on others to stay comfortable is where my fear of being stranded in my bed arose.

  A conversation with Andrew:

  Me: Can you pull my socks off?

  Andrew: No. You’re just trying to get naked. This isn’t Girls Gone Wild, Shane. It’s time to go to sleep.

  When I was a young kid, say six or seven, there was one single incident that I can remember that I believe started this whole stupid fear. Our house on Maple Street was a two-story house, which is absolutely the worst living situation for a family with a kid that can’t walk. All of the bedrooms were upstairs, so every night, my mom or dad carried me up that flight of stairs to put me to bed. Since I was young, they made me go to bed a lot earlier than they did, so they put me in my bed and then went back downstairs. My parents used a baby monitor well past my baby years; they had to, or else they never would have heard me calling for someone from all the way up in my room. I remember getting anxious between the moment I yelled one of their names and the moment I heard one of them start to climb the staircase. Did they hear me? Should I call again? And I often did call them way more than I needed just to make sure they could still hear me.

  Anyway, there was one particular night when my mom put me to bed and told me that her and my dad were going to sit out on the front porch for a little while. My six-year-old brain did not like this because of the distance and walls that would be separating me from their ears, but my mom assured me that they would have the monitor on and that I would be fine. She left my room and about ten minutes later, I decided I needed to call them to make sure they could hear me, so I did.

  No reply. No footsteps. I called again, louder. Nothing.

  Panic started to flood my body and I continued to yell for them. Little did I know the monitor had died and they couldn’t hear me at all out on the front porch. I began to cry profusely, all the while screaming for them at the top of my lungs. I was completely certain that something terrible had happened to them, and I was going to be stuck in my bed until I died. For a good forty-five minutes, I tried with all my might to call someone, anyone, for help. When my parents decided to come back inside, they immediately heard me screaming, “HELP ME!” as if I were in serious pain. They ran upstairs and calmed me down, but I was already scarred. The reality that I am absolutely helpless in my bed became burned into my mind.

  Even today I can’t sleep with my bedroom door closed. If I ever go to bed before my parents, I lie there and worry until I hear them both go to bed. If I know that only one person will be home in the morning, I wake up before everyone else leaves and ask them to put me in my chair so that if something happens to them, I won’t be stranded. I literally have never taken a nap during the day because I’m afraid that when I wake up nobody will be home and I will be in pain.

  My brain tells me that there is nothing to worry about, that my family knows I can’t be left alone in bed. But there is always that tiny “What if?” that ruins everything. What if I wake up in a considerable amount of pain and my dad is at work, my brother is at a friend’s house, and my mom falls and hurts herself in the basement?

  After experiencing that feeling of total helplessness, it’s hard to convince myself that everything will be fine.

  chapter 6

  shots! shots! shots! shots! shots! shots!

  People with SMA eventually die because their bodies suck at fighting off respiratory infections. I’m sure some of them get hit by cars or drown or accidentally overdose on Tylenol, but by and large the leading killer of people with SMA is respiratory infection. Therefore, avoiding respiratory illness is the best way for me to continue being not dead.

  One of the leading causes of respiratory illness in people with SMA is a virus called RSV, which stands for respiratory syncytial virus. According to a random medical encyclopedia I found online, RSV is “a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups. It also hates people that have SMA.” I added the last sentence myself.

  Being aware that RSV almost always causes a severe respiratory infection in children with SMA, my doctor ordered that I start receiving the preventative RSV immunization at the age of six. From then until I was fourteen, I received the RSV vaccination every winter. No big deal, right? Well, it would have been no big deal had the shots not been created by Satan himself.

  For those seven years of my life, I was forced to get the RSV shot once a month starting in October and ending in March each year. However, the amount of vaccination that had to be injected into me was more than could fit in one needle. In fact, my monthly dosage of RSV immunization had to be divided between four needles. During this period of my life, I received approximately 168 RSV shots. My thighs, which are where I used to get
shots because they were the fattest part of my body, used to look like actual pincushions, covered in tiny, red, needle scars.

  What kind of monster could stick needles into this cutie pie?

  With all that being said, 168 shots over seven years is still not that big of a deal. The factor that I have yet to mention that made these shots super-extra terrible was that the medicine they had to inject me with was basically the same consistency as chunky beef gravy. Each injection felt like lava as it sloshed into my thigh muscle. The nurse had to push the medicine in at an extremely low rate because it had to go directly into my muscle, and the liquid was so thick that my thigh muscle probably would have fucking exploded if she went any faster. Needless to say, the shots were painful, and I was afraid of them in the worst way possible.

  At first, I handled the shots pretty awfully. I would start crying when the nurse walked in with the shots, repetitively scream, “OW! OW! OW!” as she did each one, and I felt no consolation when it was over because I knew I had to do it all again next month. I remember making my mom tell me what day she had scheduled the shots for each month, so that I could mentally prepare myself as the day approached; and by mentally prepare myself I mean freak the fuck out for a week in advance. Eventually she started surprising me the day of the appointment so that I didn’t worry about it beforehand, although I definitely preferred knowing that it was approaching rather than having a great day suddenly ruined by the surprise.

  When I was eight or nine, I made a decision to stop crying while I was receiving the shots; I wasn’t any less afraid of them, but crying like a baby in front of a pretty nurse started to feel pretty embarrassing, especially when my pants were off to give her better access to my thighs. So one day I expressed this to the nurse and asked if she knew of any secret methods for dealing with the pain of the shots. She told me that it might help if I talked about something else while she was doing it to take my mind off of the pain. Okay, I could try that. She asked me what kinds of things I liked, and I replied football, specifically the Minnesota Vikings, who were my favorite team at the time. We developed a loose plan for me to tell her about the Vikings while she did the first shot.