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  • Kendall

Setting My Intentions for a New Year With FA

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.

Happy New Year! I love to use January to reflect on the previous year and picture the possibilities for the new one. I won’t go so far as to set unattainable goals, but I do believe the changing of the calendar year is a lovely time to define some intentions for the following 12 months.

Last year, my intention was “contentment.” I strived toward that every day. I wrote, “Changing a number on my calendar didn’t magically cause the universe to conspire to fulfill my desperate wish for a cure for FA [Friedreich’s ataxia], but that doesn’t mean that I can’t make this year a great one. I will continue to take my physical progression in stride and enjoy what 2022 brings me.”

Mission accomplished. My 2022 was a year full of laughter, obstacles, change, challenge, growth, and unpredictability, all of which demanded resilience, humor, and adaptability. I suspect 2023 will be similar because I’m still a wife, a mother, and an FA patient.

This August will mark the 10th anniversary of my diagnosis. After a decade dealing with my deteriorating abilities, I’ve gotten so used to FA that I don’t always notice all of the effects it has on my life. Yet when I reflect on how I’ve had to adapt to this disabled life, I’m surprised by how sad it makes me.

Our best friends from college, for example, have three beautiful girls, ages 3 to 9. They recently bought an RV, and they explore national park trails every chance they get. When I was looking through pictures of their latest adventure, my heart just broke.

I’d give anything to do that with my family. I wish that I could just pack up the truck, head out to a trail, and explore it with my family. Yes, I know there are accessible trails and ways to enjoy nature even with disability restraints, but it’s just not the same. I miss pushing myself and having my body surprise me by rising to the challenge. Instead, I try something new but discover it’s another thing I can’t do because of FA.

I’m pretty in tune with my body, adapting when I need to. I’ve realized, however, that I let my inabilities dictate my choices. I’ve sidelined my loved ones because I’ve given FA too much power.

For the sake of my family, I need to either push myself out of my comfort zone of denial and embrace more accessible adventures, or sit some of them out and encourage my family to go on adventures while I live vicariously through their joy. After all, I’m the one with FA — not them. I want to be aware of when they’re adopting my limited existence and encourage them to enjoy their healthy, capable, strong, and able bodies.

Therefore, my intention for 2023 is “awareness.” I want to be aware of the mood and ruts that my FA is causing in my household, yet also stay aware of the opportunities that are available to me. I want to be aware of the moments I need to encourage my loved ones to seize. I want to be aware of how I’m investing my time, energy, money, emotions, and efforts so that I can invest with more intentionality.

Basically, I want to be aware of how FA affects my life so that I can make better choices in the moment, rather than learning from my mistakes and missed opportunities after the fact.

I have a disability. None of my loved ones do. That fact isn’t changing anytime soon. Thus, I’ll strive to be aware of how that affects my life so that I can do better. I declare 2023 is the year of awareness, and I can’t wait to see what that brings me.

Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.” — Romans 12:2, New Living Translation

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