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…
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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Friedreich’s ataxia (FA) affects my abilities, mood, energy levels, major musculoskeletal functions, and choices. It determines my days in ways far beyond what a 23-year-old newly diagnosed me could imagine. It is a lot to process. But, like most things, I get kind of “used to” it. New adaptations can…
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.
Life is full of teachable moments, which are opportunities to share one’s experience, wisdom, and advice. When I became a parent 10 years ago, I anticipated being confronted with countless such opportunities. But I recently found myself uniquely qualified for a particular teachable moment. Because of my Friedreich’s ataxia…
Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on. I grapple with mom guilt almost daily.
As I’ve grown more physically disabled with Friedreich’s ataxia (FA), I’ve developed a new ability: knowing quickly how to address a stranger’s concerns about my disability. Whether it’s a curious child inquiring about my walker, an older person curious about that or other mobility aids, or a fellow…
I’ve been living with Friedreich’s ataxia (FA) since 2013, and I’ve been a mom since 2014. FA is progressively degenerative, and I’ve slowly become more disabled as my children have grown up. I began using a walker full time in February 2019, when my son,…
I recently wrote a column detailing my initial thoughts about the latest chapter in my Friedreich’s ataxia (FA) story: the process of accepting that I need to transition to a wheelchair. This shift is incredibly daunting, not only physically, but emotionally, logistically, and financially. Where do I start?…
The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner. You might be asking, “Why do you…
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