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Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?” People don’t tend to think of an obvious explanation as to why a…
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Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute.
As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds, etc. I encounter countless kids…
Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts, friends, or strollers for stability.
I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to…
One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device to get around in my…
I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all…
When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there…
“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected,…
At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom I always imagined I would be. Now that I have a couple of years of parenting experience under my…
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