Autumn, the season of enchanting aromas, bonfires, fairs, and those beautiful colors of foliage, makes for such a special time of year. The season is quickly making its entrance into New England, and I live for it. I have so many fond memories of my childhood during the fall season. My family and I made it a tradition to go to the fair every year. Specifically, the Big E, and the Apple Harvest here in Connecticut. It was something to look forward to after the school year began.
I remember being in my wheelchair, rolling over the bumpy fields, and not having a care in the world. I was determined to experience every bit of fun the fair had to offer, as any able-bodied person did. I always had a heart for having fun, and I wasn’t going to allow spinal muscular atrophy (SMA) to steal my joy.
Presently, things have changed. Enjoying the fair and all the fall activities isn’t as easy these days. Rolling over big, bumpy fields forces me to use a lot of muscles I’m not used to using for an extended time. My neck muscles become tired quickly, and the cooler weather is hard on my body. As a child, I was more resilient to these obstacles. It almost felt like I was a “normal” kid, able to experience what everyone else enjoyed, and my wheelchair was just tagging along.
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I loved riding on the Ferris wheel, or the rock ‘n’ roll roller coaster with my mom. However, transferring out of my chair isn’t feasible anymore. My chair is tailored to the way I sit, and removing and putting me in a different seat feels foreign and uncomfortable.
Another memory was playing fair games with the gun that shot out water to hit a target. I had a pretty good aim, if I may say so myself. My dad would drop some hard-earned money on those games to see a smile put on my face. God bless his heart. I can proudly say we never walked away without a prize.
It’s frustrating not having the use of my hands as I once did, or the balance to sit and play a simple game. Things that, at the moment, you took for granted, you later realize what you had. I want nothing more than to play those games, and win a prize for my nieces and nephews, or ride the crazy rides with them. Sometimes I feel like I have this whole other adventurous woman living inside of me who is being suppressed by SMA. I feel like a held prisoner to my own body, hoping to be bailed out and let free.
It can be exhausting being the constant observer as opposed to being the interactor. Unfortunately, that’s what SMA does over time. It can easily steal the joy from all areas in life you wouldn’t think imaginable. But despite this reality, I can’t ignore or be ungrateful for the beauty that surrounds me. My happiness is found in watching my nieces and nephews enjoy what I once did. And, although I can’t participate in every activity, I choose to be joyful for them.
I will never allow SMA to steal all my pleasures in life. It may have me cornered, but it will never have me fully defeated.