An accomplished adult with SMA reflects on his lifelong struggle to overcome the gravitational pull of low expectations
When I was 7 years old, I stomped up the front porch steps into our modest eastside Detroit home. With tears in my eyes and head bowed toward the ground, I related to my mother how some friends did not pick me to join the impromptu baseball game organizing along a strip of grass across the street. Once again, real estate on the Louisville slugger had vanished, and I had not ended up a member of either team. As I described the situation, my mother’s usually cheerful expression began to fade.
No words were spoken. Instead, she led me to our freezer and pulled out a grape Popsicle, my favorite flavor. In those days, an ice cream treat was a special occurrence, something to be envied by my neighborhood clan. As I wiped away tears, she insisted I sit on the porch, enjoy my treat and watch them play their “not-so-important" game.
“Cheer them on,” she said, adding, “Make sure those friends of yours see you enjoying your treat.”
This seemingly unremarkable story recounts an early experience and a mother’s instinctual response to comfort her child during a common childhood drama.
Surely, not to be chosen to join a team hurts, but it is well within the normal repertoire of growing up. Most people would agree that not being selected as "the best" in a competition is nothing unusual.
And yet, in that moment, a question I’ve repeatedly asked myself was born: What will be my role in the game of life?
By early grade school, the impact of what nature had built into my design had firmly caught my attention. I began to understand that, thanks to spinal muscular atrophy, many of my future experiences would be distinct from those of my neighborhood friends.
I was upset I wasn't picked to join in my neighborhood baseball game, but I wasn’t about to stop my quest to join the sport. I still believed I could be like one of the players on the 1968 World Series Championship Detroit Tigers. First baseman Norm Cash and outfielders Al Kaline, Jim Northrup, Mickey Stanley and Willie Horton were my heroes. What youthful fan wouldn’t want to emulate these stars and practice his skills at a neighborhood baseball gathering, so long as he could join the game?
Instead, I continued as an onlooker, listening to friends in Little League uniforms bragging about their latest feats — until I joined the Cub Scouts.
I was proud to wear my neckerchief and brass buckled belt. I wore that uniform so many times, I’d worn it out long before I became a Webelos Scout. My chance to participate in a softball game came during a Cub Scout outing. As I stepped into the batter’s box, my mother watched anxiously, ready to cheer me on.
The force of the ball connecting to the bat rattled my weakening grip. As the ground ball bounced past the pitcher, my trek toward first base began. I knew in an instant that I wasn’t going to make it. I couldn't run as fast as other boys in my den.
Then the power of gravity abruptly vanished as I was swept off the grass on the makeshift diamond at Detroit’s Palmer Park. My den leader lifted me from under my arms and landed me safely at first base. The infield single had been salvaged.
On that summer afternoon, I became a contributing member. I had hit more than a softball. I had hit an emotional sweet spot in my brain.
As I stood at first base, along with the shouts of “go Peter,” I’m sure I also heard “hey, that’s not fair — he can’t play that way.” But, at that moment, it didn’t matter.
I had a new and successful experience, and I wasn’t concerned that my mode of transportation to first base was unconventional. The facts of my nature had not yet stopped me from searching for that sweet spot. Now, if I ever met one of my Detroit Tiger heroes, I too had a baseball story to relate.
What makes this memory so vividly retrievable? Is it the simple need for acceptance, or does it have to do with my role within a group? Perhaps the opposing emotions evoked by the wish to belong and being pushed to the sidelines mobilized my synapses to strengthen these memories.
When did I start paying too much attention to those negative external voices? At what point did I begin letting phrases like “that’s not fair” or “you can’t do that” increasingly echo within my consciousness? I find it much harder to remember when I finally let those discouraging voices — sometimes acting to protect me — guide my actions and plan my future.
I began to lose myself in the shadows of forces that made me feel that my differences were not just bad, but had to be also somehow hidden. One of those forces sought to steal an important experience from my life. Why had someone decided I was too different to attend my neighborhood school?
“Why can’t I go to school with Danny?” I asked my mother. “He lives next door.”
“Peter needs to attend an orthopedic school,” the principal stressed to my parents. “He will not be able to cope with the challenges of a regular school day.”
“But, Danny and I play together all the time. Danny said he would help me.”
Such dialogues continued, distinguishing my unique nature and preying upon my spirit and motivation.
My special school offered only the façade of insulation from our world. My gait remained a convenient target for taunting. How long would I allow those taunts to distract me?
“You shouldn’t pursue a career in science, it’s physically too demanding.”
Human nature and its propensity to categorize those who are different would continue, but I had more significant things to consider. I had a future to plan.
Learning that unconventional is OK
I grew up with a love for science. It proved to be my pathway to new ideas. Science was a process where questions could be asked and problems could be solved.
Gravity was immobilizing my body, but I would never again let it capture and immobilize my ability to be creative or expand my knowledge.
My disability was just part of the definition of who I was. I was Peter who wanted to be a scientist and just happened to have a neuromuscular disease. I was no longer a neuromuscular disease that just happened to have my name.
In the end, I learned not to shy away from the unconventional. Why should we automatically believe that “unconventional” is bad and “ordinary” is good? In retrospect, all I had to do was broaden my view to understand that nature’s challenge also presented opportunity.
I occasionally catch myself longing to be ordinary but, for now at least, awareness of my alternative nature no longer stops me from seeking that thrill I felt one Saturday afternoon on the baseball diamond at Palmer Park.
Serendipitous life experiences facilitate and sculpt our attitudes and perspectives. While I did not understand its implications at first, SMA necessitated that I would need to become a professional baseball player, but in an entirely new way. Hitting the innumerable curve balls in my life has become a metaphor for banishing those voices and thoughts attempting to keep me away from the batter’s box.
I am no longer fearful of striking out in hopes of hitting a grand slam for my life.
Peter Pingerelli, 53, has type 3 spinal muscular atrophy (SMA). He holds a Ph.D. in biophysics and has worked for biochemical and biotechnology companies. A co-author on more than 40 commercial and academic scientific publications, he currently teaches at Western International University in Phoenix. Pingerelli lives in Peoria, Ariz., with his wife, Beverly, and two teenage daughters. This work is excerpted from his memoir-in-progress, Gravity’s Interruption: Disability and Self-Perception. He can be contacted at firstname.lastname@example.org.