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.
As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing something stable to hold on to.
Rationally, adjusting to a mobility aid was easier than I thought. For me, it was a logical transition: If I don’t want to fall, I need to accept help. But emotionally, it’s taken some time to fully adjust and accept my new reality.
I am not ashamed of or embarrassed by my walker. I view it as an extension of myself. It is something I need in order to function. I don’t see it as an object to be feared or to cause pity.
However, it is hard to accept that I am now “dependent.” Before FA, I was always very active. I was a confident go-getter. It’s scary to think how easily I could get stuck or stranded if I didn’t have my walker or someone to help me.
On the other hand, it’s a relief to know that I can safely do things with the help of my walker that I couldn’t do without it. It helps me live life on my terms, although with modifications.
My hands are occupied when they hold on to my walker, which has proven to be the biggest emotional obstacle. I can’t hold my husband’s hand when we walk into a restaurant on date night. I can’t hold my toddler’s hand when we walk through a parking lot. (Don’t worry — he knows to hold on to a strap on my purse.)
I can’t carry my baby back to her room when she’s fussy and wants some quiet cuddles. I would trade those walker handles for a loved one’s hand any day.
I am also adjusting to the barrier my walker becomes in certain situations. People in stores or hallways don’t quite know how to greet me. I try to quickly put the breaks on my walker and step to the side to give hugs, but “quickly” and FA don’t necessarily go together — it’s usually pretty awkward.
I don’t like keeping the world at “walker’s-length.” I would rather that distance not be there, but I need the walker for safety, so I guess I just need to practice the “move to the side for a hug” move some more!
Plus, there are the petty inconveniences that add up throughout the day. For example, when I wash my hands in a public bathroom, the paper towels are eight steps away. I get my walker handles slippery and wet when I cross the room to dry them.
Or the fact that my smartwatch doesn’t register my true step count because my arms don’t sway with each movement. I know that these are small things that don’t really impact the big things, but the little things can add up and dull my sunshine.
I also know that my FA will worsen. I’m soberly aware of the fact that one day I will miss my current phase of mobility and the freedom I have now. That fact constantly reminds me to count my blessings and make the most of what I can do each and every day. But that doesn’t make my heart hurt less while it catches up to my logical mind.