Adapting to Change Creatively

Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s different for everyone. It also changes.

One of the best side effects of my life with SMA is that I’ve been able to exercise my adaptability and my creativity. For me, the two go hand in hand.

SMA changes constantly; therefore, my life changes constantly. I can’t do things now that I did a year ago, such as driving my electric wheelchair. Surprisingly enough, I wasn’t sad to no longer be able to drive. Many people were sad for me, as they felt it was a loss of independence.

The fact that my disability has always changed has allowed me to prepare for the loss of abilities. When my mom recently asked how I felt about it, I told her that I didn’t miss it and I didn’t feel less independent.

Driving my electric wheelchair had become incredibly difficult and draining. Anytime I went over a bump, my hand would jerk off the joystick and someone would have to fix my hand again. If I drove around the mall, I wouldn’t have the energy to be able to feed myself. I’d also have to recuperate the entire next day, often missing out on things that I actually loved.

It had become a chore that I’d started to dread rather than a kind of freedom. I no longer loved it.

This is where my adaptability came in. The transition from an electric wheelchair to a manual one was easy.

My creativity has partially come from my SMA, but it also comes from my mother. I’ve been having some seating issues recently, and due to these issues, my table no longer fits properly. So, in order for me to be able to do my daily stuff (editing, writing, drawing), my mom actually tied my table to my armrests, which works for now.

My creativity comes out in how I hold my pen. Or how I set up books when I’m reading, because I love print books too much to buy a Kindle.

It’s also in my writing and my art.

My creativity is my job, and I love it.

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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.