How I Learned to Shine Rather Than Whine
I recently heard an interview with a local high school principal about the message he is sharing with his staff and students during these unprecedentedly hard times of COVID-19. In response to the…
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.
Featured Post
Accepting my reality with FA while striving for a better future
So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the…
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The Battle Between Taking Care of Myself and Letting FA Ruin My Life
The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue. When I was diagnosed with FA in 2013, my initial research focused on the big symptoms, such as loss of balance…
On Good Days, I Fear the Sleeping Friedreich’s Ataxia Giant
Now and then, I will have a “quiet spell” with my Friedreich’s ataxia (FA). I will notice that I haven’t fallen in a while. I haven’t noticed any new problematic symptoms develop. I will…
It Takes a Village to Live With Friedreich’s Ataxia
I admit I didn’t fully grasp the meaning of the African proverb “It takes a village to raise a child” until I became a mother. I bring it up because recently I saw…
How I Respond to Pity as a Friedreich’s Ataxia Patient
The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes. Yet,…
How I Protect My Blindside From Friedreich’s Ataxia
My healthy, rambunctious, and handsome 6-year-old son, Brooks, started his second flag football season this month. He scored two touchdowns this weekend, and I was beyond proud of him. He is such a…
How I Get Through Bad Days With Friedreich’s Ataxia
Friedreich’s ataxia (FA) is a cruel, relentless, lifelong battle. It can make good days hard and bad days intolerable. When people tell me I am “inspiring” or ask how I remain so positive…
The FA Community Needs Your Help to Advance a Potential Treatment
The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone (RTA 408) is safe…
My Loved Ones Perceive My Symptom Progression Differently
Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I often forget that they haven’t…
