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.
I don’t know if it’s self-preservation or just my personality, but I’ve become quite the creature of habit. Lately I’ve noticed that when I’m separated from my habits, I either thrive or shut down.
Breaking my routine and the comfort it provides occasionally reminds me that I’m more than my disability. What a welcome experience those moments are. I’ll sit with a group at a restaurant and just enjoy being in the moment, and the heavy burden that I shoulder constantly, Friedreich’s ataxia (FA), feels lighter.
I feel like one of the girls — laughing, contributing, and enjoying myself. Those glimpses of normalcy and uncomplicated fun fill my heart.
The shadow of disability
Then there are the breaks in routine that seem to scream, “You’re not normal!” I’ve gotten pretty used to not feeling “normal,” but when my differences are handled safely in the privacy of my home or accounted for in the intentional adaptations built into my routine, they become background noise.
But when I’m at a friend’s house, a hotel for the weekend, or a place with narrow walkways or steps, I immediately become preoccupied with how to get from Point A to Point B as quickly, safely, and independently as possible. My internal dialogue becomes, “It’ll be OK, you’re fine. Don’t draw more attention to your disability. You can do this.”
In 2013, when I was diagnosed with FA, my biggest fear was becoming dependent on mobility aids. I was sure that life as I knew it would be over when I had to swallow my pride and start using a walker, scooter, or wheelchair. While I was right, to an extent, I didn’t realize that using mobility aids would preserve my independence.
Although my actions might look different or take longer than they would if I didn’t have to combat FA, my mobility aids, for the most part, allow me to safely do what I need to do. My dependence on help fosters more independence — generally.
Recently, we took a road trip to a baseball tournament with my son’s team. We are so blessed to be among funny, kind, hardworking boys who have the sweetest families. We’re all aware of how unique and special this group is and are soaking in every moment of this fleeting chapter of life.
I was looking forward to a fun weekend with friends, but for some reason, I just couldn’t be fully present. I felt so disabled all weekend. Nothing negative happened to cause my funky mood: no falls, injuries, negative interactions, or obvious moments where I felt inadequate. But I just couldn’t find happy, easygoing, fun Kendall. My independence seemed deeply shadowed by my disability for some reason.
All I could think was, “This is exhausting. I just want easy. Why can’t I be like everyone else?”
Sometimes, pity parties creep up on me and become unshakeable. Although I hate it when that happens, it happens. And that’s OK. Tomorrow is a new day full of renewed hope and opportunities to tweak my routine.
“Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” — Lamentations 3:22-23
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