Putting mind over matter minimizes FA’s impact on my life
How I recognized a problem with my longtime mantra
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Lately, I’ve noticed a word used very frequently in casual conversations. It can have multiple meanings, depending on the context, but in my case, as someone living with visible differences, it seems to imply a problem.
In public, I’ll hear kids ask their parents, “What’s the matter with her legs?”
If I’m not overly smiley and chipper, my family will ask, “What’s the matter?”
And I often repeat to myself, “Mind over matter.”
Friedreich’s ataxia (FA) is the “matter.” It is a progressively degenerative disease that causes a variety of symptoms and demands many physical, mental, and emotional adjustments. The “matter” most people see is simply me doing my best to live with FA.
It all matters
This summer, “mind over matter” has become a forced mantra for me, and I’ve been reflecting on what that looks like in practice.
At the end of June, I suffered a fall that resulted in a fractured fibula. It has been inconvenient, to say the least. Because I can’t bear weight on that leg during recovery, and am not coordinated enough to use crutches, I depend on my husband for almost everything.
It became incredibly apparent during our beach vacation in mid-July, when I was away from the adaptations, accessibility aids, and adjustments that give me more independence in life with FA.
I was asked so many times, “How are you doing this vacation with a broken leg?” Every time, I’d reply, “Mind over matter.”
Repeating it so often made me reevaluate the word “matter.” I realized that, regardless of how mentally tough I am, my experiences matter. My feelings and mental health matter. The thoughts that pop into my head when I am strapped into an aisle chair and wheeled down the entire length of an airplane matter. The way I feel when people stare at me in confusion when my husband carries me across the beach to my lounger matters. The way my heart aches to simply walk on the beach looking for shells with my children matters.
I realized I was using that mantra to minimize the power of those feelings. In declaring my mental grit, I was refusing to let them matter.
Therefore, I need a new saying that doesn’t imply that the things weighing on my mind don’t matter; I just want to be intentional about what I focus on, as prioritizing things gives them power.
FA matters. Its effect on my life matters. But what matters more to me is what fulfills me and adds to my life. So I choose to focus on that.
“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy — think about such things.” — 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.
Becky
I know exactly how you feel, I’ve had this since I was diagnosed at 22 I am now 49. Like you I have two kids kids and my husband does loads for me, love him too bits but it’s so frustrating because he shouldn’t have to be doing as much as he does and I feel so guilty for that. Like you I love to go away as well and I hate it when people stare at me on the aeroplane, and when I go anywhere they stare now my kids are 14 and 18. I’m not allowed to go into school meeting because Me being in the wheelchair would cause embarrassment to my teenager, and that for me it’s so heartbreaking not being able to do what I want to do and having to remain really positive and upbeat all the time is so tiring unless you’ve got fa you don’t understand, you can sympathy but you will never get it because there is so much that we need help with that we know we are being a burden, even though we’re told over and over again we’re not we still feel it so we go without things to make it easier for others, probably to our stubbornness. It’s as if even when we go on holiday the taxi is saying this is lovely you are having fun but just remember I’m here it never let us forget and if we ever do forget for that split second it will have you! Just like it did with you with a break so we spend our whole life being careful when nobody else has to worry about “being careful “because our needs are never anything really in any way that we want but we don’t have a choice! It’s the frustration more than anything else! so because of our needs, we put our wants to the back of our mind and never say them so they get missed, and we just carry on regardless like we have done for years.it doesn’t matter fair anyway whatever we do it will make any decision for us so if it thinks you’re sitting, we are sitting!
Yet despite all of this, we still hit going with a smile on our face and don’t really say anything to make others feel uncomfortable. We just get on with it. I know there are millions of people so much worse of but sometimes it doesn’t feel like it. X sorry I use iPhone dictaphone and it doesn’t always pick up what I say so you might need to read it between the lines. X.