I can’t sit still during a great classic rock tune. Despite my SMA, any muscle fibers that have remained awake will begin to shimmy and shake, and even the muscles that have become withered wallflowers will try to bust a move on the dance floor. When I heard the “Rock of Ages” Broadway rendition would be booming at a theater in Wisconsin, I was excited for a storm of guitar riffs.
Here’s the thing: The artsy urban area that cuddles this historic theater is situated near my tiny hometown. Inevitably, attending an event in this area involves bumping into numerous acquaintances from my childhood.
As we zigzagged through the labyrinth of bodies in the crowded theater lobby, I had already chatted with my wonderful aunt and uncle, my first-grade teacher, and my middle school guidance counselor, and I’d sent several smiles and nods toward other familiar faces. I had rambled through “what’s new” so many times, I was feeling intrigued by the ongoings of my life these days. I hadn’t realized this Katie girl is sort of neat — we should grab coffee together sometime.
Accessible seating can be a fiasco, but we discovered our seats with ease. Since I’d brought my own chair, I waited for the helpful usher to dismantle one flimsy chair from the duo of seats that matched our tickets. Then, my wandering gaze met the eyes of another person, and she engaged me by asking if I was someone else. I recognized the name, and I knew she was referring to one of the few other kids who had a physical disability within the same school system I attended while growing up. (Our disabilities were vastly different, as were our unique personalities.)
I flashed a warm smile and said, “No, I’m Katie.” I spun my wheelchair around and settled into the accessible spot next to Andy. I took a deep breath and my eyes narrowed slightly. I soaked up the scenery as the creeping fog effects haunted the stage, all the while wondering how many people were staring at me, recognizing me throughout the evening — maybe not recalling my name or much knowledge about me — but noticing me as a familiar sight: that girl in the wheelchair.
I’ve become accustomed to this song and dance whenever I return to my hometown area for events, from celebrations to funerals. When you’re known for a distinctive appearance such as a visible physical disability, it often happens that many others know you, but you don’t always know them. In my personal experience, I’ve been battered with one particular line that people say as they approach me: “Do you remember me?” It’s often delivered to me in a high-pitched tone of voice that’s most appealing to toddlers and puppies.
These occurrences make for jovial wisecracks bounced between myself, Andy, and my close family and friends. Laughter is a therapeutic relief that alleviates tension. I strive to be receptive to others and approach strenuous situations in an effervescent manner, but I’d be remiss if I didn’t admit how frustrating it can be. Shedding light on matters helps to cultivate awareness.
The invigorating charm and warm sense of community bestowed by small towns is a thing of beauty. But within quaint social groups, labels tend to stand out, and it can be difficult to overcome stigmas. It’s something I’ve thought about as I’ve grown apart from my hometown over the years. I deeply value my roots, and I’m grateful for all the uplifting people who played a role in my childhood. I’ve also welcomed the challenge to grow into a person of multifaceted interests and perspectives.
Am I “that girl in the wheelchair”? I sure am (and my lovely wheelchair’s name is Violet).
I embrace my disability and how it has distinctively shaped me — and I’m also so much more.
I’m the admirer of whimsical rooms decorated in swift lines of busy bookshelves. I’m the holder of a fountain pen that writes the pages of a story only I can tell. I’m the shoulders that groove upon hearing the rough edges and sweet emotion of rock ‘n’ roll.
I’m a friend of the trees and the wilderness. I’m the spirit that soars when surrounded by nature’s splendor. I’m the bold advocate for accessible adventure and inclusive recreation resources.
I’m the raven-haired warrior who’s triumphed over a wicked heap of surgeries and hospitalizations, and prevailed in an arduous battle for the chance to gain strength with Spinraza treatment.
I’m the heart that blooms by encouraging others to seek fulfillment and to live in the moment. I’m a listening ear. I’m a daughter, a sister, a trustworthy confidant, a loyal companion, and an upbeat adventure ally.
And I may not have a dragon to ride, but my wheelchair is awesome.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.