Finding a balance between ignoring FA and letting it control my life
How short mental breaks help me manage living with a disability
From the minute I wake up each morning, my disability and limitations are in my face, demanding attention, adaptation, and adjustment. In other words, I’m not allowed a moment of bliss when I can forget that I have Friedreich’s ataxia (FA). I guess you could say that feeling abnormal is my normal.
Once I get up and start going through the motions of my day, FA becomes a distracting background character in the sitcom that is my life. The disease interferes with my daily plot progression, but it isn’t part of the main storyline like I imagine it wants to be. I won’t let it.
Yet there are moments, days, and even weeks when FA is so demanding that it commands the spotlight. It’s during these moments, when FA is in the driver’s seat, that I feel like a victim. Feeling like a victim of my circumstances is nearly intolerable for me, but I need those moments to get to know my enemy better and renew my passion for fighting for the life I want.
How can I fight FA if I ignore it and don’t take the time to understand its impact on my life? On the other hand, how can I fight FA if I get tunnel vision and can’t see what I’m fighting for (friends, family, passions, health, and enjoyment)? FA is a conniving villain that can easily suck me in, take over, and drag me down if I’m not careful.
A mental marathon
Finding a balance between observing FA and focusing on everything else is an overwhelming task that drains me. So, regardless of whatever rhythm I find myself in, be it rising above my disease or falling victim to it, I must schedule times to take a break from the mental marathon of FA.
This is a tricky feat since FA is so all-consuming, but I’ve found that my batteries recharge quickly when I let them. Something as simple as ordering pizza instead of cooking dinner, watching the latest Nate Bargatze Netflix comedy special after getting the kids to bed, planning our next family vacation, or cuddling with one of our four pets can completely turn my day around and realign my priorities.
When I intentionally give my brain and body a break from this tired ballet, it’s not like FA will just play by the rules and leave me alone. It will still sneak in with jealousy, filling my head with thoughts of “I can’t do that because of FA” or “I can’t stand what FA has done to me. It’s so unfair that I can’t even enjoy a simple moment without my disease complicating it.”
FA progression is unavoidable, and finding ways to coexist with it while still nurturing the other areas of my life can feel like a herculean task, but that doesn’t mean it’s not worth it. Even as I fight for the life I want and accommodate my ever-progressing symptoms, I’m soaking in all of the joy that I can.
FA isn’t going away anytime soon, but I refuse to push pause on the other areas of my life so that it can be the star of my show. There’s so much more to life than my disability.
“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.” — Philippians 4:8
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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Comments
Lauren Gaczhias
Kendall, this is a fantastic article! You have a way with words. I am an FAer of 15 years and now 26 but it's taken me many years to find the calm in the storm that is FA. Like you said, I also struggle to find balance some days (mentally of course--I gave up on the physical balance years ago). You put my feelings into words and it's nice to know that I'm not alone. :)