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.
On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for all of my 35 years, but on others, I can’t believe it’s already been 10 years.
The reality is that I’ve been living with FA for a decade now, and it’s changed my life for better and worse.
The negative changes are obvious. I’m extremely limited in what I can physically do. I can’t run, jump, carry my children, walk unassisted, or accomplish basic tasks like showering, getting dressed, cooking, doing laundry, or getting in and out of my car or bed without substantial modifications. At best, I have one or two hours a day where I don’t feel exhausted. I’m frequently in pain from scoliosis, leg cramps, and bruises from falls. I rarely get a solid night’s sleep. I’m entirely dependent on mobility aids to stand or walk, which is not only inconvenient, but also makes my disability very visible to strangers, friends, and loved ones.
Then there are the negative effects on my emotions, mood, perspective, attitude, and outlook. I frequently catch myself cursing FA and how it steals things from me or makes certain tasks seem impossible. I whine about how unfair the disease is and dream about how perfect my life would be without it. When I take a step back, I often don’t recognize the person I’ve become.
One of the universal truths FA has taught me is that life is made up of choices. After hearing the words “Kendall, you have Friedreich’s ataxia” 10 years ago, I was faced with a choice: I could bend, or I could break.
As a 25-year-old newlywed who’d been handed a complex diagnosis, I had no real idea what my future would or could hold. So I did the only things I could think to do: choose to trust that God held my future, and do my best to bend as I proceeded down this unexpected life path.
I chose to become a stay-at-home mom to two healthy, energetic, strong-willed, funny kids who remind me daily that life is precious and not all about me and my FA. I choose to fiercely love my amazing, supportive, kind, hilarious, and generous husband to the best of my ability. I choose to love my friends and family and treat them like the treasures they are. I choose to thank God daily for the abundant blessings in my life.
When I feel like I might break, I choose to extend myself copious amounts of grace. I choose to roll with the punches and adapt, adapt, then adapt again. I choose to depend on assistance humbly and constantly. I choose to graciously accept support, pity, curiosity, help, encouragement, ignorance, and kindness. I fail, fall, and bend, then choose to get up and try again.
As I reflect on the past decade and the millions of decisions I’ve made, some make me cringe, some make me proud, and some make me pause and think about what I’ll do differently next time.
I’m marching into the next decade with my head bravely held high, all while knowing that my symptoms will progress and I’ll slowly become more disabled. While that scares me, I need to remember that life with FA isn’t all bad.
After 10 years of choices, I’ve grown more than I ever imagined. I’ve laughed, cried, loved, and prayed harder than I ever thought possible. In my refusal to let FA break me, I’ve made plenty of mistakes, but I’ve also made the choice to redefine my idea of what’s possible. I’m trying to remember that the next decade will bring endless possibilities.
“The Lord is the one who goes before you. He will be with you. He will be faithful to you and will not leave you alone. Do not be afraid or troubled.” — Deuteronomy 31:8 (NLV)
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