How I’m feeling as I approach the 10th anniversary of my FA diagnosis

What a columnist has learned from a decade with Friedreich's ataxia

Kendall Harvey avatar

by Kendall Harvey |

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As I approach the 10th anniversary of my Friedreich’s ataxia (FA) diagnosis, I’m struck by an explosion of complicated and contradictory feelings.

In August 2013, when I learned that the poor balance, fatigue, and slower speech I’d been experiencing were caused by FA, my future terrified me. It still does.

Before FA entered my life, when I pictured myself at 36 years old, I envisioned going on hiking adventures in all of the national parks with my family. I imagined embarrassing my kids by doing goofy dances in the kitchen, beating them in races down Slip ‘N Slides, joining in on cannonball contests in the pool, and being the playful mom. I dreamed about doing kickboxing classes with my friends when our kids were at school and playing sand volleyball on beach vacations.

As FA slowly consumed and changed my reality, I thought that by 36, I’d be a hollow shell of my youthful self, bitter and totally disabled. I thought I’d be dependent on others for absolutely everything and that my only involvement with any future children would consist of me sitting and watching them grow up and take care of their increasingly disabled mom.

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A more nuanced perspective

I’m relieved to report that the reality of 36-year-old, FA-affected Kendall is somewhere in between. While I can’t do everything I once imagined, there’s still plenty I can do. My activities involve a lot more sitting and watching than I’d prefer, but I’ve found peace and fulfillment in this role of “disabled mom.” Although I don’t get to run and play with my kids, I help make sure they have opportunities to run and play. Be it with friends, family, camp counselors, teammates, coaches, or babysitters, my kids have an extremely fun and active life.

I, too, have a fun and active life. My activities don’t look the same as they do for other women in their 30s, but I still get fulfillment. I go to happy hours, host awesome birthday parties and play dates, exercise daily, watch the latest shows and movies, enjoy time with my family, cook yummy dinners, make my kids laugh, adore my pets, enjoy memorable vacations, and so much more. I have a strong, playful, loving, and happy marriage, and the most kind, funny, generous, and supportive friends.

I still have countless moments each day when I curse FA and think, “I can’t believe this is my life.” No, I never wanted FA to be a part of my existence, and yes, thinking about the next 10, 20, 30, or 40 years overwhelms me, but if my first 10 years with a Friedreich’s ataxia diagnosis have taught me anything, it’s that life doesn’t have to be perfect to be wonderful.

It’s so easy to romanticize our future in this day and age, given the lives portrayed in movies, reality TV, and social media, and our own delusions of grandeur. But even if your daily life doesn’t live up to these unrealistic expectations, don’t let the bitterness of that shortcoming prevent you from recognizing and reveling in the moments that exceed your expectations.

Life is made up of moments — good, bad, happy, sad, mundane, challenging, draining, fulfilling, celebratory, defeating, and everything in between. My decade with FA has forced me to process the bad so that I can bask in the good. I must roll with the punches and adapt along the way.

One thing I know for certain is that my tomorrows will include FA, and I have the power to decide what to do about that.

“Our hope comes from God. May He fill you with joy and peace because of your trust in Him. May your hope grow stronger by the power of the Holy Spirit.” — Romans 15:13 

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.


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