It’s time to get myself out of a rut and face FA head-on
Ignoring my symptom progression won't stop it from happening
Have you ever found yourself in a rut? That can happen in most areas of life, such as cooking the same rotation of meals, rewatching your favorite movie or TV show, wearing the same outfits, and so on. Most of us are creatures of comfort, meaning we know what we like and we stick to it. There’s nothing wrong with that, especially if said comforts aren’t harming anyone.
So what do you do if you find yourself in an emotional rut? In my 11 years with Friedreich’s ataxia (FA), I’ve noticed that I occasionally give my disabilities, which are the result of FA, center stage. They start to dictate my life. What I choose to do, not to do, where to go, what to try, what not to try — it’s so easy to let FA determine all of that. I start to make life accommodate my disabilities instead of making my disabilities accommodate my life.
This tendency to let FA control my choices is one I’m not proud of, and one I’ll be more mindful of going forward.
How I’m working to get out of this rut
I’m aware that sometimes I need to factor FA into my decisions, especially when it comes to safety and symptom management. That’s just the nature of living with a progressive and degenerative disease.
But I also want to figure out how to make my life accommodate my disabilities, which means I need to be better at identifying ruts — especially when my established habits aren’t adding any real benefit to my life.
FA is such an emotional roller coaster. Living with disabilities that get a little worse every day is a constant beatdown. The list of things that are unsafe for me to do keeps growing, and it becomes tempting to just sit on the sidelines of my life. I don’t need to speed along the boundaries created by my FA symptom progression by leaning into bad habits or opting out of positive opportunities.
For example, I’m nearing the transition to a wheelchair. But instead of calling my medical insurance company to see what benefits are available to me and how I need to coordinate with my doctors, I’ll pick up my phone and mindlessly scroll through Instagram. Instead of researching wheelchair options, I’ll start reorganizing closets, cabinets, drawers, and more.
I’m in a rut of ignoring my FA because the idea of being in a wheelchair overwhelms me and breaks my heart, but that isn’t productive or safe. This transition is inevitable, and my lack of preparation won’t derail the progression of my symptoms; it will only derail my ability to find a proactive way to live with them.
Therefore, I’m snapping out of my rut of avoidance. I removed social media from my phone. I finished reorganizing my house. I put manageable tasks on my calendar, such as “call insurance customer service for initial info gathering.”
“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is — his good, pleasing and perfect will.” — Romans 12:2 (NIV).
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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