Adapting to a Season of Change

Around the corner from my house there’s a shopping mall that’s stood as an iconic symbol of my small hometown for decades. It’s across the street from the high school my sister and brother-in-law went to, and it’s also situated near my go-to Barnes & Noble store, as well as some of my family’s favorite restaurants. 

When we were kids, my siblings and I went to this mall all the time. We’d eat at the food court, spend countless hours at the Disney Store, and wait in line to see Santa every December. The mall was also a regular spot for church youth group hangouts during the summertime. Several friends in this circle held jobs at places inside the food court. 

In recent years, however, the mall has transformed from having the atmosphere of Kevin Smith’s “Mallrats” to feeling more like the apocalyptic setting of George Romero’s “Dawn of the Dead.” Even before the current global health crisis decimated numerous businesses and shopping centers, this place was already in a state of rapid decline. Stores were closing left and right, and not even the Burger King inside the food court survived. 

A couple of weeks ago, I read an article stating that the mall would be demolished in February of next year. An assortment of apartment complexes and small businesses would take its place. News of its official demise came as no surprise, but it was still a bit of a gut-punch to read that headline. It felt like a piece of my childhood was being smashed into smithereens. 

In recent years, I’ve gone to this mall for two primary purposes: perusing the FYE store for Blu-Rays and collectibles, and meeting up with other friends in the SMA and muscular dystrophy (MD) communities. I’d often do both on any given visit. 

During and after college, I developed friendships with several other wheelchair users in my area who were also around my age. Anjar, Noah, Mason, and I forged a friendship, and the mall provided a solid meeting location for our band of disabled dudes. Whereas it can be difficult to fit four or more wheelchairs into restaurants, the spacious food court was perfect for us.

Amid all of the pizza and chicken sandwiches we ate, what we treasured the most was the deep and meaningful conversations we shared. We talked about life, our trials and triumphs, geek stuff, planning for the future, relationships, and plenty more. While it’s true that a shared disability between two people doesn’t automatically make them friends, it helps to spend time with others who “get it” and who can truly empathize with you.

One of my fondest memories at the good old Cary Towne Center took place about five years ago. My lifelong neighbor put me in touch with a friend from her high school named Chris who had a form of MD. Chris wanted to talk with me about college, and he expressed interest in applying to the school I attended. We hit it off right away, and I loved this guy’s humor, spirit, and popularity with the ladies in his class. The dude was a younger me! Right off the bat, I pictured a bright and prosperous future for him.

Sadly, life doesn’t always play out the way we envision it. Only a few months later, I found out that Chris suffered a bad fall in his home, and passed away on a Tuesday morning. I had just seen him a few days earlier at a power wheelchair hockey game, which he played in with my friend Jonathan. I felt only shock and devastation. Even though I only met Chris a few times, he had a profound impact on me. To this day, I still have his phone number in my contacts. 

One of the greatest lessons I’ve gleaned from living with SMA is that change is natural, and you must adapt to it. Between disability progression, rotating caregivers, and using new assistive technologies, my life is a never-ending whirlwind of change and adaptation. I’ll miss the old mall, but the memories I have there will stay with me.

***

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.