I’m living proactively with FA, but going with the flow, too

I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other.

But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my diagnosis in 2013, I have been forced to adapt over and over to this progressively degenerative condition, as my symptoms mount. So, maybe it’s hard to tell what my true nature is or what’s just another reaction to FA.

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I react — proactively

The reality of my disability doesn’t really allow for a “qué será será, whatever will be will be” attitude — at least, not if I want to ensure my safety and inclusion. I have to make sure my wheelchair can navigate where I’m going, or I need to make other mobility-aid plans. I need to verify that all of the tasks being asked of me are ones I can safely accomplish. I need to ensure that restrooms have grab rails or that there is an adult to assist me. I need to make sure I bring what I need so I don’t seem ill-prepared.

Maybe that seems like a lot of being reactive. Yes, since FA entered my life, I do have to react to its presence, but I am still able to be proactive in my approach.

My mentor, Fearless Mom founder Julie Richard, likes to say, “Proactive, it’s more than a zit cream.” I think she means being proactive can be a posture, an approach to life, a mindset, a perspective, or a tendency.

When opportunities present themselves, I pause to consider the obstacles to my safe participation and enjoyment, given the accommodations my FA requires. I can make appropriate and thoughtful plans as calendar events inch closer.

My FA symptoms will progress. But knowing this, I can use that knowledge to make well-informed decisions. No, I didn’t plan to have FA, and I didn’t plan the falls that resulted in bone breaks and surgeries, but with a proactive mindset, I can still find in them a positive impact on my life. My goal, then, is to react proactively to whatever comes my way.

“The man who does not give up when tests come is happy. After the test is over, he will receive the crown of life. God has promised this to those who love Him.” — James 1:12

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.