My Darling Disability - a Column by Kendall Harvey

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Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.

Handling my life when it’s not easy being me

When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want…

Sustaining optimism as I look to the future with FA

Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently…

Can joy and grief coexist? In my life, they do.

Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…

How my perspective about mobility aids has changed over time

I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time…

How choices shaped my first decade with FA

On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for…

How I’m navigating obstacles that postpone my joy

Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following: “I’ve reached the last years…

How I adjust to my summer 2023 body

Summer is in full swing for my family. My daughter, Collins, 6, and my son, Brooks, 8, finished school the last week of May, and it’s been nonstop chaos ever since. With camps, trips, sports, tutoring, working, exercising, chores, play dates, and more, our summer has been action-packed. Every time…

The innocence of children is a wondrous thing

One of my favorite aspects of motherhood is getting a glimpse of the way young children experience the world around them by hearing their observations and fielding their questions. As the mom of two active, social, and athletic kids — a 5-year-old daughter, Collins, and an 8-year-old…

Adjusting to new mobility aids as my FA symptoms progress

When I was a 25-year-old newlywed thinking about starting a family, the words “you have Friedreich’s ataxia” seemed like the worst life sentence imaginable, which would be followed by a painful and premature end. I was devastated. Now that I’ve lived with a Friedreich’s ataxia (FA) diagnosis for…

When FA leaves me feeling trapped by my physical limitations

Learning to live within your physical limitations is challenging, especially when the list is constantly growing because of Friedreich’s ataxia (FA) and its ever-progressing symptoms. Lately, I’ve felt trapped in my body, imprisoned by the notion of “can’t.” I’ve been adapting to and planning my life around…

Eating Humble Pie Helps Me Adjust My Perspective on Life With FA

I often write about perspective because I think it’s vitally important to intentionally maintain a healthy, well-rounded perspective when going through daily life with Friedreich’s ataxia (FA). FA is daunting and can quickly overwhelm us when we focus on the degenerative aspect of this lifelong genetic disease. We can…

Heading Into Thanksgiving With an Attitude of Gratitude

With Thanksgiving approaching, my family and I have been talking about what we’re thankful for. My 5-year-old daughter, Collins, is thankful for adorable things like her cat named Banana, our swimming pool, her school playground, horses, and of course, her brother, Mommy, and Daddy. My 8-year-old son, Brooks, is thankful…