Living in a disabled body in a predominantly able-bodied world is a rare experience that, frankly, I never anticipated having. Especially in my 30s. But thanks to my progressing Friedreich’s ataxia symptoms, it’s an existence I’m now, unfortunately, getting more and more accustomed to every day. While many of…
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 like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was incredibly overwhelmed, to say the least. I’d never…
When I was diagnosed with Friedreich’s ataxia (FA), my greatest worry was how it would affect my future. What would living with a disability look like? What would FA add to my future? What would it take away? Now that I’m nearly a decade into life with…
In my experience, much of what it takes to be a mother is the opposite of what’s required to live with a disability. As a mom, I constantly pour my all into my family. I manage the calendar and set the tone for the household, on top of all…
Although biology is a fairly standard requirement in the American educational system, and genetics is a frequently covered topic in biology, I’m realizing how little understanding most of us have about it. I was blissfully unaware of how little I’d retained from my adolescent studies until I had to try…
Living with Friedreich’s ataxia (FA) has created for me a complex relationship with the concept of help. I believe it’s important for everyone — not just people with disabilities — to humbly and graciously learn how to ask for and accept help. Fortunately (and unfortunately), FA rewrote the…
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…
About three years after my Friedreich’s ataxia (FA) diagnosis, the symptoms started to interfere with my productivity and safety. I acquired a disability parking placard and used it only when there were a lot of open accessible spots. One day, I was out running errands with my son,…
I think just about everyone has been told at some point in their lives to be grateful for what they have, to not wish the day away, and that people always want what they don’t have. On the other hand, we are also told that we were meant for more,…
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