Recalculating the Path of My Life with Friedreich’s Ataxia

If life with Friedreich’s ataxia (FA) were charted through a GPS navigation system, it would constantly say “recalculating.” The relentlessly progressive nature of this disease affects all areas of my life, both expectedly and unexpectedly, bringing changes to both path and destination.

Before my ankle break and reconstructive surgery in 2018, I was still walking independently. At that time, I was devastated at having to go from walking on my own to sitting in a wheelchair during my 10-week recovery. I was convinced that this would be the end of my independence and that I would never walk on my own again. That worry made me extremely motivated to make sure that didn’t become my reality. I followed doctors’ orders to a T. I pushed myself harder than I ever had — and it worked. I walked independently for six months, before using a walker full time in February 2019.

Loss of mobility

The decision to safely retain my ability to walk by becoming dependent on a mobility aid was a difficult adjustment, but I knew it was for the best, that it substantially decreased the odds of another catastrophic fall.

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Then, nearly three years into life with a walker, I fell and broke yet another bone, this time in my foot. I had to spend yet another recovery in a wheelchair.

Now that my foot is 75% healed, I am starting to walk again. I use my sturdy four-wheel walker when I have other adults around, just in case I need help. I can endure about two hours a day of walking before I go back to my wheelchair. I just don’t have the stamina, stability, or confidence to safely put the wheelchair away for good. I’m terrified that this is the beginning of me having to transition to life in a wheelchair, or at least life with multiple devices.

My broken foot is what caused this loss of my mobility, but even after my foot is fully healed, I will still have to deal with its impact on my being able to get around.

With FA, it often feels like it’s one step forward and three steps back. Stick me in a wheelchair during recovery and my progress is even worse. FA is a relentlessly greedy monster and I feel like it has devoured my abilities.

A seven-week recovery may not seem like a long time, but it feels like an eternity considering the timeline I’m under. I’ll fight every minute of every day for the three to five years that my doctors predict I’ll have to walk independently. I worry so much that this injury has cut into what little time I might have.

I must reset my path

As a result of these setbacks, I feel like I also need to recalibrate my expectations. I need to find new ways to face down the monster that is FA and learn to be OK with what that will mean, what feelings it will bring up.

I am reminded that there can be peace in the “and,” that it is possible to fear a loss of independence, and still trust God’s plan. That I can grieve the diminishment of my mobility, and have faith that God will carry me. That I can feel angry and discouraged that there is not yet a cure for FA, and trust that God’s timing is perfect.

It is possible to be both hopeful and fearful; contradictory emotions don’t have to cancel each other out. They can coexist. So I will strive to feel them, speak them, work through them, and deal with them wherever they lead me.

As Ferris Bueller said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” I don’t plan on missing out on my life just because of my mobility.

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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.