Adjusting to new mobility aids as my FA symptoms progress

When I was a 25-year-old newlywed thinking about starting a family, the words “you have Friedreich’s ataxia” seemed like the worst life sentence imaginable, which would be followed by a painful and premature end. I was devastated.

Now that I’ve lived with a Friedreich’s ataxia (FA) diagnosis for nearly a decade, my relationship with my disease has evolved and progressed almost as much as my symptoms have.

In the roller coaster that was the days, weeks, and months after my diagnosis, we were all trying to figure out what my future would, could, and should hold. Before FA, I looked forward to a life full of children, sports, adventures, pets, and an immeasurable amount of love. But now that FA was in the picture, could my future still hold all of that?

My loved ones and I tried our best to set some expectations, even though none of us knew anything about degenerative neurological diseases. Based on my observations of the small but mighty FA community, I knew that my future would certainly hold different mobility aids as my symptoms progressed — including the eventual use of a wheelchair.

So I had to make a decision: Did I still want to be a mom, knowing I’d be disabled for nearly all of my children’s lives?

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I tried to imagine what it’d be like to use a walker, wheelchair, and scooter at school functions, birthday parties, sporting events, vacations, and around the house. Since I didn’t have a frame of reference to base these fictitious future scenarios on, they weren’t very accurate.

My biggest fear was needing an electric mobility scooter. I had no idea how to logistically fit that into my life. I thought that once I was sitting in a scooter, all illusions of me being a “normal mom” would be over.

With a walker, I only look disabled when I’m walking. I can still sit in my folding chair with the other moms on the sidelines as we cheer on our kids. I can still sit in bleachers, pews, barstools, and picnic chairs with everyone else. But what would I do when I needed a scooter because transferring seats had become too hard or dangerous? Would I be forced to sit in the scooter all the time and fully embrace my disease progression?

Unfortunately, I can answer that question now.

Processing life with a scooter

It’s springtime, and for my family, that means sports. Between my 5-year-old daughter’s gymnastics schedule and my 8-year-old son’s baseball and lacrosse schedules, our weekends are spent scrambling from event to event. I absolutely love it and wouldn’t have it any other way, but my body disagrees.

Lugging all of that gear around from venue to venue, field to field, each time loading and unloading it is exhausting, especially for my overtaxed and limited self. Not to mention the terrain I’m tackling here in Texas Hill Country. Needless to say, it’s become overwhelming and dangerous for me to use my walker in those situations.

So I made the decision I’ve been desperately dreading: I bought an electric mobility scooter.

Last weekend was the first weekend I used it. I tried my hardest to handle this milestone with grace and patience by focusing on the fact that this scooter was enabling me to continue to be an active part of my children’s activities safely. And for the most part, that tactic worked.

But I couldn’t help the nagging storm of thoughts that kept building in my mind. The moment I’d been dreading since Aug. 19, 2013, was happening: “This is it. This is your life now. You can’t deny it anymore. You’re a disabled mom. It took a decade, but it’s happening now. Everyone can plainly see just how disabled you really are.” It’s both heartbreaking and terrifying.

I’m certain that, in due time, I’ll accept my scooter as a necessity and view it with a mild and ignorable mixture of frustration and appreciation, just as I do all of my mobility aids. But for now, I’m giving myself the grace to take things moment by moment as I process all of my feelings. And in the meantime, I choose to be present for my family and friends.

“For God has not given us the spirit of fear, but of power, and love, and self-control.” — 2 Timothy 1:7 (Modern English Version)

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.