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…
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 don’t often write about my life before Friedreich’s ataxia (FA) symptoms severely altered me at age 25. I don’t think that pining for the past is helpful when I wish to stay positive in the present and hopeful for the future. However, one of my old passions is…
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…
Have you ever found yourself in a rut? That can happen in most areas of life, such as cooking the same rotation of meals, rewatching your favorite movie or TV show, wearing the same outfits, and so on. Most of us are creatures of comfort, meaning we know what we…
In my journey with progressive Friedreich’s ataxia (FA), I battle a wide array of symptoms. While increasingly poor balance seems to be my most disruptive and frustrating symptom, it’s not the one that keeps me up at night. That would be peripheral neuropathy and the resulting nerve pain and…
I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. What led me to that diagnosis was a quest for answers about why I was losing my athletic abilities. I was always very active, participating in cheerleading, swim team, softball, volleyball, track, and any other sport possible.
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