Taking Another Friedreich’s Ataxia Setback in Stride

Kendall Harvey avatar

by Kendall Harvey |

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Despite using a walker 24/7, taking my clinical trial study treatment daily, getting ample rest, going to physical therapy weekly, working out daily, maintaining a balanced diet, and making safety modifications around my house, accidents happen. Especially with Friedreich’s ataxia (FA).

We had friends over for dinner on the Sunday evening before Labor Day. I was getting up from the dining room table to start serving dessert when I tripped and fell. I somehow banged my foot on our china cabinet. My husband, Kyle, quickly came over and helped me to my feet.

I braced myself on my walker to test my foot. It was painful, but I thought it was OK. After about three steps, though, I could no longer endure the pain of walking safely. Kyle helped me into the recliner, and we propped my foot up and wrapped an ice pack around it. We continued the evening and enjoyed dessert and conversations for a couple hours. When our company left and our kids went to bed, Kyle carried me to bed.

The next morning, I tried to put weight on my foot, but it was miserably painful. I just knew that I had damaged it.

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I made an appointment with an orthopedic doctor. After examining my X-rays, she said, “Well, do you want the good news or the bad news?” I kindly asked for both, and she said, “The good news is that your ankle hardware from your 2018 break did its job by protecting your ankle and preventing damage there. The bad news is that you do indeed have a Jones fracture on your fifth metatarsal.”

The treatment plan is to keep my foot in an Aircast walking boot to protect it and keep it in a proper position, and to bear no weight on my fractured foot. Since I am not coordinated enough for crutches, this means time in a wheelchair for me.

We are praying for a speedy recovery so that I can get back on my feet, but it all depends on how quickly I do (or don’t) heal. Bone stimulation and surgery have not been taken off the table yet. We will adjust the treatment plan pending the follow-up X-rays. In the meantime, all I can do is follow doctor’s orders while living my busy life as a wife, mom, writer, friend, pet owner, and homemaker.

We bought our current house in 2019 with the intention of living here until our kids go to college, at least. This will be the house we will adapt come wheelchair time, because it has enough space to accommodate necessary changes. Yet, being in a wheelchair right now makes me realize just how much change will be necessary. It’s overwhelming and daunting.

Being in a wheelchair is so hard. Knowing that this is in my near future as a permanent reality, not a temporary measure while recovering from an injury, is crushing my spirit.

Yet, just as I did when adapting to using a walker, I need to remind myself that mobility aids are just that — tools that aid my mobility. I will have freedom and be able to stay active when the time comes for me to consider my safety and transition from a walker to a wheelchair.

While I look forward to recovering from this setback and getting back to my “normal,” I’m doing my best to use this time to gain perspective.

I have the opportunity to experience this house as a wheelchair user so that we can proactively make changes ahead of time. I will continue my efforts to stay ambulatory with renewed passion.

Most importantly, I will remind myself that being in a wheelchair isn’t the end of the world. Yes, it’s inconvenient. Yes, it’s an adjustment. And yes, I wish it wasn’t part of my story. But it will be just that — part of my story. Not the end.

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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.

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