At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see…
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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I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…
What pops into your mind when you hear the word “strength”? I’m guessing that your answer will be based on the people around you. Anyone who was a child in the 1980s and ’90s will likely think about the Arnold Schwarzeneggers, Hulk Hogans, and Tom Cruises who filled the movies…
As my battle with Friedreich’s ataxia (FA) and my progressively diminishing physical abilities — primarily balance, coordination, dexterity, and energy — wages on relentlessly, I’m forced to adapt. While I’m used to depending on mobility aids, as I’ve done since February 2019, I often notice the reactions of others…
People often speak about the strength it must take to be a young person living with a progressive neurological disease. While I was diagnosed with Friedreich’s ataxia (FA) at age 25 and have found that yes, it takes every ounce of my strength sometimes simply to check off my…
I’m frequently asked how I handle the relentless progression of Friedreich’s ataxia (FA) with a smile on my face. My answer is simple: I don’t do it on my own. Without the support of all the wonderful people in my life, I’d still be that scared and confused statue…
Friedreich’s ataxia (FA) is progressively degenerative, and its reach is far and wide. What started as trouble staying on my feet during sand volleyball matches became an inability to walk unassisted 10 years later. With that progression, to say that FA has demanded adaptation from me would be an…
This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor…
As I begin 2025, all of my planning, expectations, projects, and so forth are through the lens of this awareness: This is the year I’ll start using a wheelchair full time. Knowing this shift was coming has been both helpful and hard. As my family and I fully embraced…
Life isn’t easy for anyone. Every person must trudge through hardship and struggles. Whether it’s a temporary sadness like illness or injury, seasonal hardships like a breakup or career setbacks, or even battling a life-long progressive illness such as Friedreich’s ataxia (FA), we all have to cope with unpleasant…
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