Facing the inevitable in life with FA, despite my best efforts

At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see FA when they looked at me.

However, in the early days of my public walk with FA — no pun intended — the disease wasn’t easy to spot if you didn’t know what to look for. I just seemed a little off — a bit uncoordinated and fatigued, but generally average.

I could feel people’s eyes on me, watching for signs of my neurological disorder. It was as if they were looking not only for confirmation that my diagnosis was true, but for evidence that I was fighting to stay able-bodied. Every wobble and stumble felt like an inevitable confirmation of my FA, but it also added fuel to the fire, motivating me to delay my progression for as long as possible.

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As a classic overthinker, I realize that most of those expectations and judgments were likely in my head, but they oddly helped motivate me to keep going, to keep sharing my journey in the name of awareness, and to keep fighting to hold on to my abilities.

Yet somehow, despite all of that, with the eyes of everyone on me and the knowledge of what FA had in store for me, it happened. I slowly morphed from the girl who seemed just a little off to the disabled lady.

You know that cliche nightmare of being naked at school, or showing up for a huge test that you’d forgotten about? Since realizing that I’m indeed a disabled mom of elementary-age kids, I’ve had a similar recurring nightmare, only with an FA twist.

In said nightmare, I embarrass my precious children by fully displaying my disabilities and falling spectacularly in front of them and their friends at school.

This summer, I did just that. My nightmare became reality.

The inevitable fall

I was picking my children up from a summer camp on campus and was still using a rollator at the time. While opening the lobby door for myself, a sweet young student rushed to my aid. He was trying to be helpful by taking the door and holding it open for me, but he didn’t realize that as I was pushing the door open, I was leaning on the door handle for balance. When he pulled the door open for me, he accidentally pulled me off balance.

I fell in front of all of the children present at the summer camp as well as the adults who were picking them up.

Once my tumble was over, I quickly determined that I was largely unharmed (just minor bumps and scrapes on my knees and the heels of my hands) and graciously accepted help back to my feet from concerned onlookers.

All in all, the fall wasn’t as bad as it could’ve been. I’d expected that it’d happen eventually; it just felt inevitable.

I tried to smile through my shattered heart, reassure my children that I was OK, and muster the strength to get back home without another incident.

I made an unofficial vow to try and put my best foot forward when I’m out of the house and take every precaution to stay on my feet. I know that’s not reasonably attainable for anyone, let alone someone with FA, but being as safe as possible is a good goal.

In my evolving quest for safety, I now depend on a wheelchair most of the time when I’m outside the comforts of my home. While this change presents a slew of logistical obstacles and emotions, I’m thankful that I’m safer.

It’s said that hindsight is 20/20, and while that fall at school could’ve been avoided if I’d already embraced my inevitable use of a wheelchair, I don’t know if I’d feel the same appreciation for the safety the device provides if I hadn’t had that fall.

“And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.” — Romans 5:5 (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.