I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Through my column, I’ve become aware of two habits: I focus a lot on what I can or can’t do because of Friedreich’s ataxia (FA) and its associated disability, and I watch a lot of children’s movies. Both of these make me introspective, which forces me to be intentional about my perspective and how I approach life with FA.
When I focus too intently on what I can’t do because of my disability, I lose sight of what I can do. That tends to cause me to devalue my contributions as a wife, mother, friend, and neighbor. I become bitter about my disability and fixate on everything that FA has taken from me.
That focus compels me to lose the drive to be productive, creative, and limitless. I get too comfortable being angry with FA.
When I get down about what I can’t do, my fallback is to think about what I can still do. Yet this practice occasionally makes me feel like the things on my “can-do” list are simply a conciliation collection. So what should I do?
‘More than you are now’
I try to focus on tasks that I can safely and independently do — mindless things that need to be accomplished, such as picking up around the house, cleaning dishes, washing and sorting the laundry, and cooking. Then I dedicate time to the activities that enrich my life, like chatting with friends, spending quality time with my husband, exercising, playing board games, and yes, watching happy movies with my children.
I find comfort in the things I can still do, and the discomfort that I feel from the ever-growing “can’t do” list feels less debilitating.
The other day, we were watching “Kung Fu Panda 3.” This franchise is about an unlikely hero panda bear, Po, who saves his people and way of life time and time again through his mastery of the ancient art of kung fu. Po’s kung fu teacher, Master Shifu, tells him, “If you only do what you can do, you will never be more than you are now.”
Once again, my convictions were challenged by a children’s movie. Am I doing myself a disservice by only doing what I can do?
I don’t think it’d be advisable to throw caution to the wind and do unsafe things outside of FA’s physical limitations, but perhaps I’ve become too comfortable resting on my laurels. Perhaps I need to follow the advice from “Kung Fu Panda 3” and see if I can become more than I am now.
I think that I’ve given too much power to my “can do” and “can’t do” lists. Maybe if I stop looking at the world as black and white — safe or unsafe, independent or assisted, possible or impossible — a whole new world of color will become available to me.
Unfortunately, no guidebook details how to live a fulfilling life with FA, but I think that if one existed, a portion of it would talk about what you choose to submit your power to.
I, for one, am going to try to be more aware of the power my “can’t do” list has over my life. Then, hopefully, I can channel that power into something more worthwhile.
“Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.” — Romans 12:2 (New Living Translation)
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