There’s a way to move forward, even if it’s now in a wheelchair

Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life.

My participation isn’t always ideal, however, and I have to stay on the sidelines more often. But when I get in a rhythm and feel safe and included, those issues doesn’t bother me as much. I feel just like everyone else, doing what I need to do to not only get through life, but to appreciate the journey. I genuinely enjoy my life most of the time.

This current chapter, however, has been harder in that realm. I don’t always authentically and easily enjoy everything that fills my day. I have to work harder to smile and laugh, and I find my thoughts constantly centered around FA and what I can’t do.

Recommended Reading

February 17, 2025 Columns by Jean Walsh

Getting diagnosed with FA made me afraid of wheelchair users

As I embark upon the dreaded transition to a wheelchair that my deteriorating abilities are insisting I make, I’m forced to realize that I honestly thought we’d have a cure or significant treatments before this shift in my mobility.

I think my denial was so strong and my confidence in the medical community so high that life in a wheelchair seemed like a small and distant threat. Yet here I am, acquiring a wheelchair, researching ramps, getting an accessible minivan, and widening doorways in my house, all because of FA and what it’s done to my abilities.

It’s hard. It’s sad. It’s heavy. It’s disheartening. But it’s necessary.

Beginning a new world with lessons from the old

So what can I do about it since refusal to accept reality and simply giving up aren’t options?

I’m reminded of how I felt in 2019, when I started using a walker. That seemed too hard, too much the end of my preferred lifestyle. Yet now I find myself desperately clinging to my walker, not wanting the next step.

My children and I recently rewatched the original 1994 version of “The Lion King,” and I haven’t been able to stop thinking about the scene where Rafiki (a mandrill, though often called a baboon) delivers some tough love to the lion Simba, then an adult.

Simba admits he’s been running from his past to avoid dealing with his future, so Rafiki whacks him on the head with his walking stick. When Simba asks him, “What did you do that for?” Rafiki says, “It doesn’t matter. It’s in the past.” To which Simba replies, “Yeah, but it still hurts.”

Then Rafiki delivers a profound and convincing truth by saying, “Oh, yes, the past can hurt. But the way I see it, you can either run from it or learn from it.”

With that in mind, what can I learn from my past with my walker so that I can better face my future with a wheelchair? A few things come to mind.

• It wasn’t as life-altering as I anticipated.
• It kept me safer.
• It allowed me to stay involved in my life, even if that involvement looked different from what I preferred.

Who’s to say I won’t feel the same about my life in a wheelchair in six years’ time? I give myself permission to be sad about this transition, but I also give myself permission to feel empowered and hopeful. Those feelings don’t negate each other; they can exist simultaneously as long as I keep striving to move onward and upward.

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” — Romans 8:28 (New Living Translation)

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.