Confronting the illusion of choice with Friedreich’s ataxia

For a long time, I thought the moment I’d start using a wheelchair would be my choice. It wouldn’t be an easy one, of course, but it would still be my decision.

Living with Friedreich’s ataxia (FA) often feels like a series of choices: Cane or no cane? Walker or no walker? Stop driving or keep going? Manual wheelchair or power wheelchair? From the outside, it can look like we are choosing our path through the disease, our “brand” of disability. That belief shaped how I saw my own transition to a wheelchair.

Using one came with internal negotiations about my abilities, quiet promises not to spend too much time in it, and the belief that if I handled it carefully enough, I could still become the least disabled version of myself.

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In my case, I moved directly from walking to using a wheelchair, without using a walker. For many people with FA, a walker is a smart, effective, and empowering tool. It just wasn’t that for me, since my body skipped that chapter. My first walking aid was a wheelchair.

Being in a wheelchair felt, in a word, heavy — heavier than functioning on my own, and much heavier than its physical makeup of metal, wheels, and dependence. It became a statement about who I was and how much of my ability I was willing to let go of.

Somewhere in my belief that I was “choosing” the wheelchair, I convinced myself that strength meant selecting the path of least visible disability; that there was a version of me that looked more acceptable, more intact, more “normal,” and it was my responsibility to aim for that version for as long as possible.

For me, that sense of choice took the shape of masculinity. It showed up as the belief that rolling meant weakness, that walking meant resolve, and that the right path was the one that looked the least compromised from the outside. I believed that was the path I would take — it was not. And it is not.

Masculinity is not the only place this illusion of choice lives. For others, it may show up as independence, a reluctance to be a burden, or a desire to protect loved ones from worry. Sometimes it is the quiet expectation to stay positive, capable, and inspiring, no matter how our bodies are actually functioning.

Whether that choice shows up around using a cane or a walker, giving up driving, or switching from a manual wheelchair to a power one, it can feel like FA is asking us to choose wisely, as if the right decision could preserve a better version of ourselves.

I eventually realized that I wasn’t choosing whether or how the disease would progress at all.

I often talk about mindset and attitude, and I know my broad silence about disease severity may seem as if disease progression is a consequence of a lack of grit or optimism. But it is not.

Friedreich’s ataxia doesn’t wait for emotional preparedness, nor does it negotiate with pride. It doesn’t reward determination by slowing down. The severity of the disease and the way it expresses itself in each body make the idea of choice largely meaningless.

The only real choice left is not how the disease progresses, but how fully we live in spite of that progression.

From the outside, it may look like someone has decided to use a wheelchair. From the inside, it is simpler: Using a wheelchair allows me to live more fully.

Sitting in a wheelchair didn’t mean I chose the easier path. It meant I chose the honest one. It meant I stopped measuring my worth by how closely I could approximate an able-bodied ideal that was never designed with me in mind.

Taking choice out of the equation did not make me weaker. It forced me to rebuild my identity with something sturdier than appearance or pride. It asked me to redefine strength as the willingness to meet reality where it is.

I wish I had understood this sooner. Where someone is in their disability is not a reflection of effort, courage, or character.

Where I am now is not a destination I selected, but one I arrived at over time. The wheelchair didn’t take anything from me except the illusion that I was supposed to outrun a disease that was never playing fairly. What it gave me was the chance to stop blaming myself for being exactly where I am.

That acceptance is still unfolding, but it is real. For me, that’s what strength looks like right now.

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.