Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses to rule out. For example, I never knew there was such a thing as gluten ataxia, but I…
My Darling Disability
— Kendall Harvey
Kendall Harvey is a wife and mother of two in Austin, Texas. She has been navigating life with Friedreich’s ataxia (FA) since her diagnosis in 2013 at the age of 25. She worked in marketing before “retiring” to be a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. Until that day comes, she aspires to inspire others with her column by detailing personal life lessons about grit and grace. Kendall shares a message of hope despite disability.
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When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story. My father, the kindest, wisest, and most generous and…
When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you. When I was 23, I began noticing that my balance was different than it used to be. I…
Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA is affecting my current experience and measure it against previous years. This might seem masochistic or like I am…
I am beyond blessed to be “Mom” to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. They are wonderful, healthy, happy, energetic, smart, and funny. I feel a mix of emotions when I watch them run and play. I am so proud of them that it overwhelms…
One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m constantly broadcasting my most all-consuming source of fear and frustration to the world, regardless of my mood or the people…
Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in Texas is getting back to normal, and our routines are crazy. We went from being quarantined in our house for over…
As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively. When my symptoms first started, I was able to get by holding onto someone for support. I would loop arms with my husband, parents, or friends for extra balance.
When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.” FA is a rare, genetic occurrence that causes our cells to betray us with the progressive deterioration of dexterity, coordination, energy, and more. FA relentlessly worsens all of…
In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia (FA) symptoms. Here’s why I think this: My late-onset FA began exhibiting symptoms that were worrisome enough that I began…
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