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.
I recently binged four seasons of the television series “The Handmaid’s Tale.” I will spare you my enthusiastically detailed summary except for this: The main character, June Osborne, is a prisoner in the household of a commander and his wife in Gilead, a totalitarian society in what used to be part of the United States. In a fanatical attempt to repopulate a devastated world, the few remaining fertile women are forced into sexual servitude, including June.
Following an escape attempt in which June ends up getting shot, she shares this internal monologue: “I used to think of my body as an instrument for the accomplishment of my will. I could use it to run, pick things up, make things happen. There were limits, of course, but my body was nonetheless one with me. It obeyed my commands, mostly without complaint. Not anymore. Now there’s tending to be done.”
I never expected to relate to the tragically complicated world illustrated by Margaret Atwood, but this monologue and its parallels to my experience with Friedreich’s ataxia (FA) haunted me. I watched it five times and teared up every time thinking, “Same. This is my relationship with my body.”
I feel like no matter how fiercely I will my body to accomplish something, and no matter how simple it is, there is complaint. Nothing physical comes naturally or easily anymore — my body is now a conduit for FA-based complaints.
Part of the tending required of me to cope with my FA-controlled reality is going to physical therapy to work on my balance and coordination, increase my strength and stamina, and develop safe adaptations for tasks that are dangerously challenging for me. When a new exercise is introduced, I have to pause and really think about what the different parts of my body need to do to perform the task at hand, and how to begin. After a 30-second or so pause, I make my first attempt.
This experience always leaves me introspective for a few days. Part of me can’t believe that something as simple as stepping up onto a platform seems so foreign and challenging, part of me thinks about how to better accomplish the task next time, and another part of me is proud of my body for accomplishing something out of my norm.
I think about the days of my past when I did every sport and activity available to me. I participated in swimming, softball, soccer, volleyball, gymnastics, cheerleading, high jump, tennis, triple jump, long jump, and powder puff football. I ran, lifted weights, tried different boot camps, and joined exercise classes. And now I can’t step up onto a stair without using every ounce of my concentration and heavy assistance? I frequently have out-of-body experiences when I think, “Whose broken body is this? And how did I get stuck in here?”
My body is no longer an instrument for the accomplishment of my will. My body is now under the control of FA and has been at odds with it for nine years. I can confidently say FA and I have opposing wills.
My will for life is a fulfilling existence in which I embrace opportunity, enjoy every available experience, laugh often, shine God’s light, and always try to help those around me. FA seems determined to suck all of that will out of me and replace it with endless challenges.
So while I can no longer use my body “to run, pick things up, make things happen” the same way I once could, I can still seek opportunities to accomplish my will. It will probably look and feel different than I wish it would — but that’s OK! Just like when I try new things in physical therapy, it might take my all and leave me with a mix of emotions, but at least I am still trying to stay in tune with my instrument: my body.
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