Humor is my key to survival in life with SMA

The other day, I got my wheelchair stuck in a doorway.

All I wanted to do was see the Christmas decorations at a local coffee shop. Perhaps even enjoy a nice cup of their matcha while quietly watching everything sparkle. Instead, I was wedged in the doorway, pushing my joystick forward.

Nothing.

Then, I tried going in reverse.

Again, nothing.

Finally, after relentless persistence with the joystick, I flung back, crashing into the door and causing a scene. Miraculously, the door survived. My ego, however, was a different story. As I made my roll of shame back to the van, I couldn’t help but laugh.

Recommended Reading

April 28, 2023 Columns by Alyssa Silva

My wheelchair is not a hindrance, but a gateway to the world

This situation could’ve upset me for so many reasons, but while living with spinal muscular atrophy (SMA), I’ve learned not to always take life so seriously. It doesn’t mean I’m minimizing my experiences, or that they don’t frustrate or exhaust me — quite the opposite. But I laugh because it’s hard and it allows me to acknowledge my reality without crushing my spirit.

Admittedly, it wasn’t the first time I’d gotten stuck in a doorway. Underneath my wheelchair is a small bracket that attaches to my EZ Lock Docking System in my wheelchair-accessible van. It sits about an inch off the ground, allowing my wheelchair to stay safely in place without the need for straps during car rides. While incredibly convenient, it’s also the reason I get caught on thresholds, doorways, and random architectural features more than I care to admit.

This bracket has landed me in quite a few awkward predicaments. Strangers have tried to help me, to no avail. I’ve left scuff marks in public places and drawn unwanted attention to myself. These moments can be frustrating. They chisel away at my patience and tolerance, but I know I can either let them consume me or find a way to move through them. Oftentimes, I choose the latter — with a dash of humor.

The doorway incident was one of the many ways I try to weave humor into my daily life. After all, having SMA my entire life has meant living with grief, pain, and the never-ending struggles that this disease causes. It has meant experiencing the mental toll of wondering whether my body will cooperate for the day or if I’ll face health complications or challenging procedures. The monstrous side of this disease tries to dim my light through the daily weight of adapting, planning, and pushing through. Without humor, this would be too heavy a burden for me to carry.

Humor will never have the healing power to negate all of my problems. It will never erase the barriers I face or make places magically accessible and experiences less complicated. However, it can serve as a starting point for how I cope and make sense of the nuances I face each day with SMA. It can be a powerful reminder that even when my body pushes back and life doesn’t unfold as planned, SMA doesn’t have the upper hand on my spirits.

There is a time and a place for humor, just as there is a time when life with SMA must be taken seriously. That day at the coffee shop, I chose to laugh. Finding humor in the situation didn’t mean I took it lightly. Instead, I took it seriously enough to protect my joy.

And sometimes that choice is what helps me keep moving forward.

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.