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.
When I explain Friedreich’s ataxia (FA) to people, I adjust my verbiage depending on who I’m talking to.
If my children or their friends ask why I use a walker, I’ll explain that my legs don’t work very well and I use the walker to help me avoid falling and injuring myself. If an adult stranger asks me, I’ll usually say something like, “I have a neurological condition called Friedreich’s ataxia that is slowly eroding my balance, so I use this walker to help me get around.”
The people who know me a little better than the casual stranger have probably heard me use the words “progressive” and “degenerative” when describing new or worsening symptoms. You could easily look up the definitions of those words to get a basic understanding of what they mean, but I feel compelled to explain their meaning to me since I frequently use them and their significance has a notable impact on my life.
Understanding and explaining my reality
Progression to me is the worsening of symptoms, the appearance of new ones, or the advancement of my disabilities. I think of the adjective “degenerative” as the erosion of my remaining abilities. The rather bleak way of explaining how FA is progressive and degenerative is this: My disease is worse than it was yesterday, the best it will ever be again today, and will be worse tomorrow. While my progression is slow and usually imperceptible, it is still progression.
This undeniable reality of a disease like FA is both a blessing and a curse. The blessing of gradual symptom progression is that sometimes the change happens so slowly I don’t even notice it. After making some necessary adaptations, I can fall into a rhythm and coexist with my disabilities.
Last weekend, for example, my husband and I were preparing dinner together. We were happily chatting while busily popping about the fridge, pantry, stove, sink, and cabinets to successfully cook a meal. As I was stepping out of my husband’s way, I grabbed the counter while I pivoted to reach for my walker so that I could take a few steps to the left. It was a mindless move I have done countless times. Only this time, it wasn’t mindless.
I paused to think about what I was doing. I realized that I couldn’t think of the last time I had taken a single step without holding on to something or someone. While I know this is necessary to safely navigate my daily tasks, it felt like a gut punch. It was as if I had suddenly realized I was totally disabled.
My symptoms have progressed to a point where my way of navigating life is completely different from everyone around me. I am completely dependent on assistance for every move I make.
That’s when I understood the curse of a progressively degenerative disease like FA. Realizing that you are an entirely different person can take your breath away and shake your foundation. I don’t know when this complete dependence on assistance for every single movement became my reality, I just know it wasn’t a conscious choice. It was an unconscious act of self-preservation in reaction to my progressively degenerating abilities.
With that revelation, I had a subsequent realization: Progression demands perseverance. In the degenerative disease world, I think the two are synonymous. Whether you consciously choose to or not, you must adapt and persevere, or fall victim to symptom progression.
As for me and my subconscious, we choose perseverance.
“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else. For we are each responsible for our own conduct.” — Galatians 6:4-5
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