I’m facing the challenge of a new wheelchair with FA

After nearly a week of learning to use my new wheelchair, it was time to venture out in public. Why, you may wonder, did I hesitate? And why dramatize such a trivial thing with such foreboding language?

When the chair arrived, and after I was finally able to sit in the seat tailor made for my tall and thin dimensions, one of the first things to happen upset my balance just enough to plant my hands against the hardwood floor. Thankfully, my father was there to sit me back upright. I could lose my balance and fall if anything unexpected happened, given my Friedreich’s ataxia (FA) and the new chair.

My old wheelchair had a custom-molded back support, which my physical therapist at the time expressed confidence in, saying it’d benefit me in many ways and manage my scoliosis. But it came to be disastrous for my strength and stability, after close to three years of being able to extend both arms at the same time without needing to activate my core muscles or my back.

Because of FA’s rarity, it’s often understudied, and therapists sometimes take educated guesses about what may help. This choice led to regrets and finally to a reversal, even though the new chair would initially disrupt my daily activities.

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On the morning of Aug. 13, I entered my church building and tentatively maneuvered over the threshold in my new wheelchair. I skipped coffee as a sure way to prevent a spill. Following Sunday school, I declined an offer for assistance, insisting instead on prioritizing my own conditioning as I made my way to the sanctuary.

By the start of the morning worship service, I could no longer hide my exhaustion. An older woman with a cane, whom I’d never met, scooted closer from the pew next to me, opening a hymnal and sharing it with me as we sang “All Praise to God, Who Reigns Above,” the women singing verse four alone while the men went alone with verse five.

As the pastor stood in the pulpit to preach from Hebrews 7:20-25 in a message titled “The Power of Permanence,” all I could do was to grasp anything I could, not let go, and prevent myself from falling. The woman next to me put her hand on my shoulder from time to time to help me stabilize as the pastor continued.

When the service was finally finished, all I could think about was my own frailty and finitude, longing to just go home and lay my head on my pillow. Gathering enough reserve energy to wheel myself and remain upright was impossible, and so with assistance, I made it outside at last.

Resting in the shade, waiting for my ride, I wasn’t done with my Sunday adventure. I was too beat to be embarrassed, but despite expectation that I’d be “othered,” instead I received love and confirmation from those who witnessed my difficulty. It was all humbling, but for a guy as proud as me, having my own vulnerability exposed was a good learning and training experience for living with FA.

By Monday afternoon, I was refreshed enough for my long-awaited physical therapy evaluation. Making my way to the second-floor office, I enjoyed my increasing fitness and confidence in the new chair. Moreover, the therapist was positive about me being able to regain the proper strength I’d need for the adjustment.

I left the office with my eyes on the challenge before me, knowing that this one could be overcome.

On Tuesday, I entered the gym, something I haven’t done consistently since moving from another city eight months ago. I strapped a gait belt around my chest for the first time, something I learned from a paraplegic pal at my old gym. Realizing over the past few days the exact things I needed to do, I went to work.

Sometimes the path will present a challenge. I liken it to a barrier. Maybe other forks in the road look easier; maybe the obstacle looks impassible; but treading on is the stuff of life, and the learning, the growth, and the people we meet in the way are not the destination, but a blessing along the way.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.