As the Fourth of July approaches, I’m thinking about the word “independence” a lot. At 32, my independence looks different than I’d once imagined. As a Friedreich’s ataxia (FA) patient, my body is progressively losing so many abilities. Most noticeable and problematic is my degenerating coordination and balance.
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 don’t often write about my life before Friedreich’s ataxia (FA) symptoms severely altered me at age 25. I don’t think that pining for the past is helpful when I wish to stay positive in the present and hopeful for the future. However, one of my old passions is…
As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid. I am lucky that I lived a wonderfully carefree and…
Life with Friedreich’s ataxia (FA) requires constant adjustment and acceptance. I have to adjust to new symptoms regularly, whether they are temporary, like extra fatigue during a particularly busy season, or permanent, like the frustrating decrease in my walking speed. I have to adjust to safely accommodate these new…
I greatly admire people with an optimistic outlook on life, those who see the best possible outcome in all situations, point out silver linings during hard times, and encourage disheartened or apprehensive people. I used to be an optimist. Before I had any real hardship in my life, I didn’t…
I’m a big fan of holidays, parties, and any other reason to be festive. I love celebrating birthdays, beginnings and ends, milestones, anniversaries, and everything in between. I enjoy celebrations because they force me to focus on someone or something other than myself. They allow me to just be happy,…
The other day, I experienced a strange moment. As usual, at the end of my son’s baseball game, I had to just sit there waiting for help while everyone around me was busy packing up snacks, folding chairs, and gathering all of the equipment required for Little League spectators.
This week marks the end of the school year for many schools in my area, and therefore, the beginning of summer. I was recently chatting with a large group of friends, whose children are different ages and attend different schools, about everything we’ve survived during this unprecedentedly difficult school year.
As my Friedreich’s ataxia (FA) has progressed, I’ve had to make adjustments to accommodate new symptoms. Since my 2013 diagnosis, I’ve had to intentionally account for countless modifications every day — step by step and movement by movement. As part of my duties as an FA patient, I go…
As Mother’s Day approaches, I can’t help but pause to reflect on what this holiday means to me. I love celebrating my mother. Not only did she give me life, she gave me a wonderful life. She is a fundamental member of the village I need to get through…
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