Reflecting on SMA progression and my blissful blue bench days
Adapting to change is an ongoing process in life with SMA
When I was a kid, I spent many mornings and afternoons sitting on a padded blue bench with a table in front of me. I spent this time playing with my action figures, drawing, and immersing myself in Saturday morning cartoons. Kids, there was a time before streaming services when shows were on at designated times and not available on an iPad.
In those days, I could sit up straight without any additional support for several hours at a time. I loved my blue bench, and sitting on it worked as a nontraditional form of physical therapy. It allowed me to flex my muscles, utilize my upper body strength, and sit in something other than my power wheelchair. My parents could easily transfer me back then, and I could also get on the couch, the floor, and rides at Disney World.
These days, my mobility is more similar to that of the four grandparents in “Willy Wonka and the Chocolate Factory.” True, I may not lie in bed indefinitely, but once I’m in my chair, it’s where I remain for most of the day. SMA is progressive, and as such, I adapt to its changes over time.
Since my transfers now require multiple steps and I use lateral supports to keep me stable, I stay in a more fixed position when I’m in my chair. Aqua therapy is the only activity I do that allows me to move my body freely.
Adapting to continued change
Sometimes I find myself reminiscing about the blue bench days and the times when I could still lift my arms in the air. I could also crawl, stretch my legs, and lift food to my mouth. In many ways, I’ve forgotten what the sensation of those motions felt like, but I remember I once had the abilities.
I write all this to remind myself and others that it’s OK to have these thoughts. Embracing my life with SMA and experiencing frustration about my physical limitations aren’t mutually exclusive. There are days when I want nothing more than to turn pages of a book without assistance, or even just get through the day without fatigue.
Yet, while these moments do occur, the feeling of disabled joy is more powerful. I may not have much upper body strength or dexterity, but I have a robotic arm that’s way cooler to use. I’m dependent on others for assistance around the clock, but this means I get to build relationships with a multitude of caregivers. Sitting for long periods of time limits the amount of activities I can do, but this gives me more time to read, write, and watch movies. I would never have met some of my closest friends if I didn’t have SMA.
As I write this on my laptop using just one finger and my onscreen keyboard, I realize that even my method of writing might change eventually. I’ll experience frustration and disappointment, but I’ll adapt nonetheless. So while I miss those sessions playing on my blue bench and the bliss of childhood, I’m excited for what’s next.
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