Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire.
I used to take my physical abilities for granted before my FA symptoms started. I practiced hard at swimming, yet the rhythm of the butterfly and freestyle strokes came naturally to me. I was a good swimmer, which made it fun. I didn’t have to think about it, I just trained my body to become faster and more efficient. My body responded and preformed. It was a relief to be able to turn off my brain and push my body.
Oh, how things have changed. My FA symptoms now have progressed to the point where I need a walker to function independently. FA has taken away my physical ease across the board. Nothing comes naturally or easily anymore, and nothing is mindless.
I do what I can to stay strong, dexterous, and healthy by working out daily and going to physical therapy every week. My physical therapist begins our sessions by asking if I’ve had any falls, what symptoms most disrupt my day, and what I need worked on.
Lately, FA has taken hold of my feet, which consequently has become my chief complaint at physical therapy. I have less sensation overall, but my toes are painfully curling. I have restless legs at night and get beastly cramps in my legs and feet. Recently, I experienced more falls and near falls than ever since I started using a walker in early 2019. My physical therapist and I realized that my body hadn’t adapted to the loss of sensation, and I was now unknowingly dragging my feet and toes.
I have to think diligently about every step I take, again. This is particularly frustrating, because a big silver lining to using a walker, besides being a significant improvement in my ability to avoid falling, was that walking had become a little mindless again. But FA has taken that from me, too.
Chronic physical fatigue is a major symptom that nearly all FA patients struggle with. I expected it as I learned more about my disease after my 2103 diagnosis. But I was not prepared for the mental fatigue. Being so mindful and intentional about every single move I make is exhausting.
With my limited physical abilities, I have become intensely intentional to function safely. This has bled into all areas of my life. I have become more disciplined and intentional with my time, attention, diet, and words.
I also have become intentionally courageous. I used to cringe when people used words like “inspiring” or “strong” to describe me. I didn’t feel strong when my symptoms progressed to the point that I couldn’t walk independently anymore. I didn’t feel inspiring when the darkness of this relentless uphill battle crushed my spirit. As I have adjusted to my increasingly failing abilities to keep pursuing a happy life of my choosing, those adjectives now inspire and push me to choose courage in the face of my fears.
In her book “I Thought It Was Just Me,” Brown wrote that courage used to mean “‘To speak one’s mind by telling all one’s heart.'”
“Over time,” she continued, “this definition has changed, and today, we typically associate courage with heroic and brave deeds. But in my opinion, this definition fails to recognize the inner strength and level of commitment required for us to actually speak honestly and openly about who we are and about our experiences — good and bad. Speaking from our hearts is what I think of as ‘ordinary courage.’”
Next time someone tells me that I am strong or courageous, instead of immediately dismissing the thought because I am not a Marvel Avenger out saving the world with crazy stunts and heroic physical strength, I will feel renewed knowing that I am a different kind of hero with a different kind of courage. I will keep sharing my heart to be intentionally courageous, all to make the world a better place.
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 Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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