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.
I was diagnosed with Friedreich’s ataxia (FA) at age 25. Because FA is so rare, my neurologist had limited information to share with me. I’d never heard of the disease I’d now be fighting for the rest of my life, so I did what anyone would do: I Googled it.
What I discovered terrified me, because I’d unfortunately stumbled upon the Wikipedia page instead of a credible, science-based source. The site said that FA patients have an average life expectancy of 35. That meant I had 10 years left — and they’d be miserable years full of disability, pain, hospitalizations, and, eventually, cardiac failure.
I was overwhelmed, to say the least. I was angry that this was my new reality, I felt guilty for bringing FA into my new husband’s life, I was grieving the children I thought we couldn’t have, and I was scared. I didn’t want to watch my dreamy life become a medical nightmare. I didn’t want to leave my husband, Kyle — who was so full of hope, optimism, and life — a widower.
Making each year count
Those feelings were still swirling around in my heart and head when I celebrated my 26th birthday in 2013, just three weeks after my diagnosis. I felt so much pressure to enjoy that birthday, now that a cruel stopwatch was looming over my life. Kyle and I took a spontaneous trip with friends to Las Vegas and decided to keep the news about FA private for a while, at least until we knew more about the disease.
I was determined to have carefree fun and soak up all I could with my relatively healthy body. I packed the high heels I’d worn at our wedding, as a tribute to my life before FA. I wanted to wear them again before I became too disabled to do so. But on the night I wore the outfit I’d planned to pair the heels with, I opted for sparkly sandals instead. I thought, “And so it begins.”
FA smashed my plans like a gigantic, relentless, devastating, villainous wrecking ball, and I had no way to stop it.
The only thing I could think to do was to arm myself with information and let it empower me to fight. I met with FA specialists, read everything I could from credible sources, consumed patient stories, and attempted to make a new plan for my future.
Realistically, I now knew that the life expectancy I’d initially read was incorrect (mostly due to my age at onset, progression to date, and the number of GAA repeats in my FXN genes), but the thought of not making it past 35 still haunted me.
This week, I turn 36. So according to my 2013 research, I will start living on borrowed time.
My whole story
As I reflect on my last 10 birthdays with FA, I feel an overwhelming sense of peace, accomplishment, and pride — not pride about myself, but rather my village. My life is more than I could have ever dared to hope for.
I have the best husband on earth. He is unfailingly kind, warm, funny, supportive, optimistic, and generous. Kyle has taken this uprooting of our lives with such grace and positivity. He never asked, “Why us? Why me?” Instead, he held steadfast. If you want to know what it means to love someone “in good times and in bad, in sickness and in health,” look at Kyle. He is simply amazing.
Our children are my biggest accomplishment. Brooks is funny, talented, inquisitive, sensitive, loquacious, and compassionate. Collins is joyful, observant, kind, patient, and imaginative. I am so honored to be their mom. I strive to be the mother they deserve, and I’m so thankful for the motivation they provide me.
I am proud of my 36 years, and I look forward to my 37th and beyond. Yes, I wish that FA wasn’t a part of my story, but I’m thankful that it isn’t my whole story.
Since my diagnosis, my FA has progressed. It’s a struggle, and I curse it daily. But life goes on. Thank you, Team Kendall, for supporting and loving me through this journey. Together, we will cure FA. But until then, we live, laugh, and love. Because what else is there to do?
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