Living with spinal muscular atrophy (SMA) is something I’ve written about many times before. It’s a rare, degenerative neuromuscular disorder that weakens the muscles over time. It’s not a condition that might get worse. It will. That’s the reality.
Most days, I try very hard to be my usual self: smiling, positive, and determined. I believe in living life fully, in making a difference, in refusing to be defined only by the word disabled. But there are moments—like lately—when it’s hard to find that same joy while watching myself deteriorate in real time.
SMA is cruel in its predictability. It doesn’t surprise you by stopping—it’s the opposite. You know exactly what’s coming. The muscles that let you hug your family, hold a pen, type these words, drink from a straw—slowly weaken, shrink, fail. There’s no cure (yet). There’s no real way to halt the decline. While I’m a pretty happy person by nature, let me be honest here: there’s nothing joyful about watching your own hand give up on you.
My left hand has been weakening for a while, but recently it’s gotten noticeably worse. Last night, we tried a TENS machine on it, just to see if we could get anything going. And for a brief moment, the vibrations made some of the muscles flicker back to life. No, it’s not a cure. It’s not even a real solution. But maybe, just maybe, it might buy me a few more moments of function. A few more precious tasks I can do for myself. I’m lucky that I’m right-handed, and that hand is doing fine for now.
But yesterday, every member of my family—one by one—asked what was wrong with my left hand. They realized, at the same time I did, that it’s quite bad. It took everything in me to hold my tears back. Because it’s a special kind of pain when you see the fear, pity, or sadness reflected back at you in the eyes of the people you love.
I often crack a joke to defuse those moments. “Better get working on some new material,” I tell myself. Humor has always been my shield. If I can make them laugh, maybe they won’t see how scared I am. But the truth is, I am scared. I’m frustrated. I know I have so much more to give. I’m not ready to stop. I won’t stop.
I’m going to keep trying anything and everything I can, even if it’s only to buy me a few extra days, weeks, or months of independence. I’ll fight for every bit of strength my body has left to give. Because while SMA may take my muscle, it doesn’t get to take my spirit.
About SMA
For anyone reading this who doesn’t know: Spinal Muscular Atrophy (SMA) is a genetic disorder affecting the motor neurons in the spinal cord. Over time, the signals between the brain and the muscles get weaker or stop altogether. It’s progressive, meaning it worsens over time, and there is currently no cure.
You can learn more about how SMA affects me, and how I try to keep living life to the fullest, on this website. I share these moments not to ask for pity, but to create understanding. To remind everyone that disability is part of life, not an ending to it.
If you’re facing something similar, please know you’re not alone. And please, hold onto your humor, your hope, your determination—because those are muscles worth strengthening, too.
If you want to support my journey, learn more about my story, or help with my fundraising for medical expenses and accessibility needs, please visit kerrywalshtrust.co.za.
