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 we approached the end of 2023, I didn’t feel like myself. I was overwhelmed by most things in my life, and I constantly felt inadequate. That made it easy for me to retreat, curse my circumstances, cancel plans, and spread my bad mood like a plague.
I’d been functioning in a frenzy that just wasn’t sustainable. I’d poured too much of myself out without replenishing life back into me. As the mom of a 9-year-old son and a 6-year-old daughter while living with Friedreich’s ataxia (FA) and its progressively degenerative and wide range of symptoms, it’s fairly understandable that I found myself in a funk.
I was caught in a vicious cycle. The thought of going out among people beyond my immediate family was overwhelming and exhausting, so I’d just stay home. Then the guilt and “FOMO” (fear of missing out) would swirl around in my mind, making rest impossible. Meanwhile, the mindless tasks that most of us are used to tackling in between activities, such as laundry, cooking, doing the dishes, and picking up the house, seemed daunting and impossible, so they began to pile up, making my home feel overwhelming and exhausting, too.
All of this negativity made me miserable. I could feel my symptoms claiming victory; my FA was the star and the main headline every day. It was controlling my life, not content to stay just a part of it. I got so sick of feeling this way that I was determined to snap out of it. But how?
I decided to start small.
One thing leads to another
I committed to switching from carpooling to the “plaza pickup” for my kids, meaning that I’d park and walk to a plaza courtyard area to pick up my kids from school. This small change held me accountable in three ways: I had to get dressed during the week; I had to make small talk with other parents; and I couldn’t cancel. The accountability felt good, and smiling and talking to my friends felt great.
I also decided to declutter my house, starting by organizing the junk drawer in my kitchen. The accomplishment I felt from completing this simple, 15-minute task was addicting, giving me the urge to purge junk from the rest of the house. A few weeks and 10 truck beds of Goodwill donation drop-offs later, I’ve fallen back in love with my home.
I recommitted not only to attending church, but also to volunteering there. My family reinstated game night. I’m exercising regularly. We reinvigorated our weeknight menu with some forgotten favorites among our family recipes.
I’m not saying that I completely pulled myself out of my funk or that any of these measures is a permanent fix for the very real problems that were weighing me down. Nor am I saying that “fake it till you make it” is a suitable substitute for professional help. There’s absolutely nothing wrong with seeking such help; in fact, it requires strength, bravery, and vulnerability. I have sought and benefited from professional help, so I applaud others who do the same.
I’m simply sharing a few small changes that have made a significant impact on my mental state. I hope and pray that my mood and thoughts, as well as the overall look and feel of my home, priorities, and schedule, will continue to be an intentionally positive perspective that I choose, instead of the FA-controlled mindset that made my past few months a dark haze. I hope and pray the same for you and yours.
“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
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