Laughing at My Nightmare (2 page)

chapter 2

the lazy baby

My life waved goodbye to normalcy in 1992 at the Sayre Childhood Center in Bethlehem, Pennsylvania. I was nine months old, and while the rest of my classmates spent their days crawling around the room, pooping themselves and making a mess of everything they could get their hands on, I was perfectly content to sit wherever I had been placed, playing with whatever toy I had been given, or simply watching my other baby friends explore the world. I never moved. Crawling just didn’t interest me.

My observant daycare monitor mentioned my complacent nature to my parents and suggested that they take me to a pediatrician. It was probably “no big deal.” Sometimes babies experience delays in physical development, but it was probably best to play it safe and have a professional check me out. My pediatrician was more concerned. He felt that I needed to be seen by a neurological specialist.

I’m not sure how a sedentary baby winds up with such a grisly scar.

That ‘no big deal’ became slightly bigger.

After spending an hour watching and interacting with me, the neurologist declared that she was almost certain I had a neuromuscular disease called spinal muscular atrophy (SMA). She couldn’t be sure without performing a few significantly more invasive tests, but those needed to be done at a specialized hospital in Philadelphia, so the waiting continued. She warned my parents not to research the disease before I had an official diagnosis; the existing literature would only dishearten (read: scare the shit out of) them.

I need to take a little time to explain the boring facts about my disease. I apologize. If you’d like to make this paragraph more interesting, light your hair on fire and try to finish the paragraph before your scalp starts to melt. SMA is a neuromuscular disease that affects approximately .0001 percent of the population. (I can’t wait for the hate mail that begins: Hey Fucker, I looked up the prevalence of SMA, and I’ll have you know the true percentage is actually .00023 percent.” I’ve learned on my blog that people will get angry and argumentative over anything.) The human body has two proteins that help to create and maintain muscle tissue. An individual with SMA lacks one of those proteins, resulting in poor muscle development and progressive muscle deterioration over time. Basically my body just didn’t feel like developing these proteins while I was in the womb. I was the laziest fetus you’d ever meet.

There are three main types of SMA, aptly named Type I, II, and III. People born with Type I usually die before their second birthday due to severe wasting of lung and heart muscle tissue. On the other hand, Type III individuals usually walk for a few years before their symptoms become apparent. Their muscles waste away much more slowly than those of people with the other two types. Type II is really a toss-up. It is characterized as being an unpredictable combination of Types I and III. Important disclaimer: people outlive their prognoses all the time, sometimes by many years. I provide them to give you an idea of the very nature of the disease.

A few months after receiving the unofficial diagnosis from the local neurologist, my parents and I experienced a tiny glimpse of hell as I underwent the necessary tests to confirm the SMA diagnosis at Children’s Hospital of Philadelphia. I don’t remember it obviously, but I’ve heard the story from my parents a billion times. One of the tests involved inserting electrified needles into my thighs and shoulders, creating an electric current through baby me. Healthy muscles twitch and spasm when subjected to electricity. In my case, I reacted to the incredible pain with only tears; my muscles remained motionless. As if being electrocuted wasn’t enough trauma, the doctors also cut a chunk of muscle from my thigh later that afternoon for another test.

Shane Pickup Line: Hey, wanna see my scars? I’ve got one on my thigh, but you’ll have to help me take my pants off to see it.

The next day my parents were finally given the crushing news they’d been expecting to hear all along. Shane has Spinal Muscular Atrophy Type II.

“Will he ever walk?” asked my father.

To this day, he tells me that hearing the doctor’s response was the hardest moment in his entire life.

But therein lies a peculiar detail that defines my family. Finding out about the diagnosis was the most difficult part for them. Accepting it and figuring out how to deal with it came almost naturally.

My parents decided that this diagnosis was not going to cripple the happy life they had imagined for themselves and their son. Life is beautiful, with or without a severely debilitating muscle wasting disease. Before grief and sorrow even had a chance to sink their teeth in, my parents made a decision. My life would be normal. SMA was not the end, but the beginning. A bump in the road. An obstacle to rise above.

And so, the journey began.

chapter 3

learning to drive

As a baby I wasn’t much different than any other baby. Other than not being able to crawl, I was not limited in any other way. My mom tells me that it was almost nice never having to worry about where I was because I was always exactly where she put me.

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.