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.