I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia (FA) is not easy to navigate. Like any lifelong journey, it has difficult seasons, roadblocks, and the occasional smooth path when you get to set your cruise control.
It has unexpected detours, expenses, learning opportunities, and challenges, resulting in a collection of memories and experiences. Unfortunately, my current FA journey has me in the middle of a dangerous construction zone.
I was bedridden with COVID-19 at the beginning of the year, and it hit me hard. My already insurmountable fatigue was multiplied to a level that I didn’t think was humanly possible, my whole body ached, and I was incredibly dizzy. After about two weeks, I started to feel human again and tried to get back to my daily routines.
I have used a walker full time for about three years, but lately, it hasn’t been enough. Especially in my post-COVID-19 body. My FA symptoms are becoming more and more problematic, and my attempts to accommodate my increasing disability are becoming less and less effective. I have had many scary and dramatic falls, including one that ended in the hospital, getting X-rays for a suspected fractured pelvis.
All this is to say, FA has disrupted my life lately. It seems to have complete control of everything right now, and I am playing catch-up as I try to figure out how to move forward into the new chapter of my disability story.
The other night, I had to authorize another software update installation on my iPhone, and I realized that this is basically what my mind and body need right now. The adaptations required throughout my journey with FA, the adjustments that I have to make on the fly to incorporate the new challenges that FA puts in my path, are like software updates. It was clear to me that I needed to do yet another update, adaptation, and recalibration to safely continue about my life.
I have been recovering from this big fall and subsequent injury while continuing my COVID-19 recovery. These processes have been happening in tandem, and every day, my body hurts less than it did the day before.
This part of my FA journey has had a lasting impact on my life. I am so afraid of falling again and not being lucky enough to walk away with just a bone bruise that I have done a complete overhaul of how I function.
This most recent FA software update included never taking my hands off of my walker while I am moving, slowing down in all activities, resting more, and taking deep breaths before I do something so that I have a clear plan in mind to help me safely complete my task no matter how mundane.
This update has been exhausting, frustrating, and emotional. I was talking about this with my husband the other evening, and I just cried because absolutely nothing is easy for me. Everything I do, from scratching my arm, grabbing a pot to start cooking dinner, putting on a T-shirt, or helping my daughter do her ponytail, and everything in between, requires extreme care, attention, intention, and focus. Absolutely nothing I do is mindless or second nature. And right when I think I physically get the hang of something, another software update rolls out and I have to adapt again.
I desperately wish that my body were as simple as my iPhone. I wish I could just click “Restore to factory settings” and undo everything FA has done to my body so that I could function like other moms in their mid-30s. I wish I could “undo” falls and injuries. I wish I could delete and remove the things I don’t need or like.
I wish I could download things to make life easier. I wish I could simply purchase a new model of my body, one free of FA and the necessary software updates required to operate it.
But until that big wish is granted in the form of a cure, I will continue diligently maintaining this body the best I can.