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  • Kendall

Both Big and Little Moments Define My Life With FA

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.

Life is made up of moments — big and small, good and bad, expected and unexpected. Some argue that life is defined by the big moments, while others say it is defined by the little ones. I believe that character is revealed through our reactions to all of these moments, and that character defines our lives.

Some big moments we can prepare for, knowing how our life will change. These include spending years in school to earn a degree. Planning for a wedding day for months. Embarking on a dream vacation you have been saving for and anticipating for what feels like forever. Preparing the nursery for a new baby. Graduations, weddings, anniversaries, and birthdays are the days we remember most.

Then there are the days we don’t plan for but which change our lives just the same. Like the day I tagged along to my brother’s state championship baseball tournament and met one of his teammates, who ended up being the love of my life. Or the day I found out I was pregnant with my son while my husband was out mowing the yard. Or the day I took my kids to the neighborhood park and ended up meeting my new best friend.

There are also the little moments that no one sees. The nights when you just want to go to bed but stay up a little later to study your notes one more time for tomorrow’s presentation, or pack your son’s lunch, or fold one last load of laundry. The times when you choose to wave someone ahead of you in the checkout line, or hold the door for the person behind you.

All of these experiences have taught me that I can’t control what happens to me, but I can control how I respond.

One of the biggest moments of my life unexpectedly happened on Aug. 19, 2013. I went to my neurologist’s office for the 10th time in a couple of months, fully prepared to hear, “We hit another dead end. Your symptoms aren’t caused by anything genetic, just like they weren’t caused by anything environmental or dietary, a tumor, multiple sclerosis, or muscular dystrophy. Let’s rule out ___ now.” Instead, I heard, “Kendall, I feared this might be the case. You have Friedreich’s ataxia.”

All of the moments since then, good and bad, have taught me that I have no control over what FA does to my body. I have no control over how my FA symptoms progress. But I can control the choices I make each day in response to my FA symptoms, and these choices define my character.

I can choose to grumble about needing physical therapy, or I can express gratitude that there are physical therapists that want to help me. I can choose to complain about using a walker, or I can appreciate the independence that my walker provides me. I can choose to be bitter and angry about my failing body, or I can do what I can to try and enjoy life within my circumstances.

I don’t always make the right choices. I don’t always choose gratitude, optimism, hope, and light, as that is not my natural reflex. But I am trying to shape my mindset to develop a character I can be proud of.

I don’t want FA to define my life. I don’t want to be defined by my achievements. I strive to be defined as a woman of character who shines brightly, both in the big and little moments.

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