Hi, friends. I have always appreciated posts where people shared their struggles in life. Exposing our vulnerabilities helps us relate with each other. This post is the start of a new series where I speak about different aspects of my life with a disability (Friedreich’s Ataxia).
Before vs. After–Assistive Devices
I’m 25 now and have been using assistive devices since I was about 20. In high school, my disability had not progressed that far, so I didn’t fall often. Since my gait was off, I stumbled and staggered when I walked, so I was self-conscious that I would someday fall at school. I was paranoid that people were laughing at me and talking about me as I walked by (some people were, but that’s a subject for another post).
It’s sad yet amusing to look back on the situations that gave me intense anxiety. One example is walking to the front of the class to turn in homework or a test and having to step over bookbags in the aisle. Another was the awards ceremonies where we walked dangerously close to the edge of the stage to receive the awards.
Fast forward to the first couple years of college–my condition was fast approaching that fuzzy line between “can still walk unassisted” and “needs a device.” My anxiety about walking only increased, and by this point, I actually was falling in public. I remember one time in particular at Target that I fell beside my car, and the group of adolescents passing by just stared. Luckily, a nice lady came up to ask if she could help in any way, and I feebly requested that she bring me a cart (aka a makeshift walker). I purchased my first rollator walker soon after this.
I started using a walker in 2013 and transitioned to a wheelchair in 2016. I never fall in public anymore (because it’s almost impossible to fall when sitting hehe), but since my disability is progressive and worsens with time, I do still fall at home.
How It Feels Physically & Emotionally
My falls are usually triggered by breaking my focus and losing my balance. I maintain strong muscles, but FA has diminished my coordination and motor skills. Any time that I am walking a bit (such as to use my bathroom), I strategize when and where to hold/grab bars and counters while watching my feet as I move. If I don’t break my focus, all ends well; if I do–perhaps because I look up in a briefly disorienting way or my leg twitches unexpectedly–I’m on the ground.
I almost never sustain (long term) injuries from my falls, both because I’m fit and because I’ve fallen so many times that I am somehow “good” at it. Falls do take an emotional toll. Immediately afterwards, as I sit on the ground, I feel helpless, angry, and small. Often, a few tears brim over my eyes, and I feel really sorry for myself…
Fast forward a couple minutes–I’m done sniffling, and I’m now crawling around to find something sturdy to hold on to as I pull myself up. Life may knock me down, but by the grace of God and years of consistent exercise, I keep getting back up.
Click here to see an article that was chosen for publication in North Carolina’s Emerging Writers about my FA journey. It does repeat some of this info, so apologies for that. You will get to see more pictures of me if nothing else! Thanks in advance to those who read it. I’m adding the link to my “About” page.
Thanks for reading! I’d love it if some of y’all shared your struggles and vulnerabilities in the comments. His strength is made perfect in weakness!