Stories

Let's be honest. Life with SMA can feel restrictive. Confining. Imprisoning. You're trapped on a train, and all you can do is let the caboose carry you—even if the tracks are headed somewhere you don't want to go. Sometimes it's a physical constraint: you want to do something, but your body won't let you. Sometimes it's emotional or psychological: you want to do something, but you don't feel capable. Sometimes it's societal: you want to be X, but the world insists that you play the part of Y.

I usually find it's a combination of the three. My body won't cooperate, *and* I don't feel capable, *and* I'm suffocating under the weight of society's understanding of disability. The train is chugging towards a cliff. The doors are locked, the windows boarded up, and someone appears to have sabotaged the engines.

What do you do?

I've been on that train, feeling out of control, more times than I can count. It never gets easier.

But that's the hoity-toity therapist definition. What does psychological flexibility look like in our everyday lives?

I think of it in terms of imagination. Life with SMA can be restrictive. That's just fact. But sometimes we adhere to that fact a little too hard.

Years ago, psychologists performed a series of experiments to better understand animal behavior, they repeatedly delivered electric shocks to dogs. Sadly, the dogs who learned they couldn't escape the shocks eventually gave up on escaping altogether. The way out was right in front of them; all they had to do was jump over a barrier. But they had internalized the belief that there was no escape.

This kind of behavior also manifests in humans. Psychologists call it “learned helplessness.”

What if you stop disparaging your body for what it can't do, and instead focus on what it can? What if you choose to believe we're all just making it up as we go along? (This is true, by the way.) What if you stop trying to change society's understanding of disability and put all your energy towards making what you have work for you?