The Importance of Being Your Own Advocate
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…
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
Starting the process that’ll lead to me relying on a wheelchair
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…
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Progressing Through Friedreich’s Ataxia With a Healthy Perspective
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…
I Feel Both Pride and Envy While Parenting With Friedreich’s Ataxia
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…
Knowing When to Share Information About Friedreich’s Ataxia
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…
After Quarantine, I Am ‘the Disabled Mom’ Again
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…
Let’s ‘Walk and Roll’ With Our Mobility Devices
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…
In the Battle With Friedreich’s Ataxia, We’re Both Relentless
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…
I Have a Strange Relationship With Adrenaline
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…
Acting Together to Cure Friedreich’s Ataxia
One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little any of us can accomplish. Acting together,…
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