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.
Have you heard the expression that “There’s a fine line between love and hate”? The idea is that there’s so much passion required for every all-consuming emotion that things could easily tip from love to hate, and vice versa, when all of those wild emotions are running free.
If this is true, then I think it could almost be said that there is a fine line between friend and enemy.
When I started my journey with Friedreich’s ataxia (FA), one of my primary personal goals was to walk independently for as long as possible. I loathed the idea of being forced to sacrifice my independence for safety in the name of FA. The focus of this fear-driven loathing was a mobility aid.
I viewed a mobility aid — in my case, a walker — as the physical embodiment of my disability and everything I hated about it. I was so focused on my negative feelings about needing a walker that I was ignoring the benefit it would provide.
When I acquired my first walker and brought it into my house, I glared at my new enemy with so much hate. I resented needing a mobility aid and refused to view it as anything but a new unfairness FA had forced upon my life. I was content harboring hatred for this enemy.
After some time, I realized how unhealthy that attitude was. Being bitter and angry wasn’t making my FA go away. It didn’t make me need a walker any less. It didn’t help me accept the walker and go about my life with any additional ease. In fact, I think it accomplished the opposite.
I tried to remain neutral when it came to my thoughts about my mobility aid. I couldn’t control how it made me feel to see it beside my bed, next to me at dinner, or in the trunk of my car, but I could control how I let those feelings affect my day.
I adopted the Serenity Prayer that is used by Alcoholics Anonymous: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
I can’t change the reality that I have FA. I can’t change the fact that I need the walker and, occasionally, a scooter or wheelchair to function. I can’t change the daunting realization that even with mobility aids, daily activities will be hard and my symptoms will continue to progress. But I can change my attitude about all of this.
I’ve been dependent on a mobility aid for over three years. While there hasn’t been a single day that I haven’t wrestled with how that makes me feel, I have developed strategies for coping with it.
I’ll allow myself to really feel my feelings when I have the time. I’ll give myself a moment to curse the walker, yell in frustration, or cry. On the occasions that my walker isn’t enough to meet my needs, I’ll take a deep breath before admitting it and then asking for assistance. When my balance waivers and my walker catches me and prevents a fall, I’ll allow myself a moment to compose myself and feel gratitude.
After I accepted the fact that a mobility aid would always be a part of my life and I would continue to have conflicting feelings about it every day, I found the wisdom to navigate the things I can and cannot change.
I switch multiple times a day between loving and hating my walker and thinking of it as both a helpful friend and a cruel, nagging enemy. And that is OK.
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