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.
One of the most frustrating effects of the progression of my Friedreich’s ataxia (FA) symptoms is how slow I’ve become lately.
Physically, I do everything more slowly. Not only am I slower than I used to be, but also I am slower than everyone in my life. I talk more slowly, I type more slowly, I cook more slowly, I get dressed more slowly, and most frustrating of all, I walk more slowly. To me, this stage of progression makes me look and feel more disabled than anything I have experienced thus far in my FA journey.
It is equally heartbreaking and infuriating that I can’t keep up with anyone, especially my 4-year-old daughter, Collins. She is used to having a disabled mom, and nothing about my reality seems to faze her because she doesn’t know any differently. But even she has noticed my slowing speed.
The other day, we were out running errands and a nice man held the door open for me. It took me a while to get to the door, and I jokingly apologized for my speed.
He waved off my apology, saying, “Absolutely no problem. Slow and steady wins the race. I’m happy to help as long as it takes.”
That was such a caring response, and I appreciated the kindness and compassion he showed to a complete stranger.
But the phrase “slow and steady wins the race” has been haunting me. Because while I am slow, I am not steady, and I don’t feel like a winner.
In my eight years with progressing FA, I have often deliberately slowed down when my balance felt more affected, and that always seemed to do the trick. I would make a conscious effort to go slower, my mind would catch up to the “new normal,” and I would feel safe again.
Now, I have slowed down so much that I don’t see how another speed adjustment would allow me to productively function at all. Even then, going more slowly doesn’t seem to be enough anymore. I’m still unsteady, and I still feel unsafe.
I know my slow speed only seems like the most devastating symptom so far because it’s the most recent one I am experiencing, but being this slow makes me feel more disabled than using a walker ever has.
The walker seemed like a smart next step to take almost three years ago as my symptoms progressed. It is a smart precaution to prevent falls and keep me safe and independent. But I realize now that I have had unrealistic expectations that no walking aid can meet.
I feel like the walker should negate my symptoms and that I should be able to function like anyone else while using one — or at the very least, it should pause my symptom progression and let me go about my business as usual.
I realized I essentially expected my walker to empower me to function better since I agreed to use it. I thought it should do more than simply prevent falls; it should help me get better.
But that is obviously not the case, and I know that’s an unreasonable expectation. My walker is not a treatment for my disease, especially with several years of worsening symptoms to combat.
Given the nature of a progressively degenerative disease like FA, the reality is that even with the walker, I am incredibly slow and increasingly unsteady. And to me, that is not a combination to “win the race.”
As I was proudly watching phenomenal, hardworking athletes compete in track and field events in the Summer Olympics the other day, I had an epiphany. No, I will not “win the race” against healthy, non-FA patients. I can only focus on my own race.
Yes, it will be slow. Yes, it will be unsteady. Yes, it will be hard. And no, I won’t win any gold medals for my stellar physical achievements. But I can measure a “win” in other ways.