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.
My Darling Disability - a Column by Kendall Harvey
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…
Since Friedreich’s ataxia (FA) entered my life in 2013, I have spent a lot of time blaming it for getting in the way of the life I had planned. I would no longer be able to be the fun mom who did cannonball contests with her kids, or…
Life is made up of moments — big and small, good and bad, expected and unexpected. Some argue that life is defined by the big moments, while others say it is defined by the little ones. I believe that character is revealed through our reactions to all of these moments,…
Since my Friedreich’s ataxia (FA) diagnosis in 2013, I have chosen to openly share my journey with this progressive, degenerative disease. I share updates about both the physical and emotional changes in my daily life as dictated by FA, on social media, in columns, in text threads, and in…
Last weekend, a situation I dread as a mobility aid-dependent person happened: I drove to a store to run a quick errand, and when I opened the back of my SUV, my walker wasn’t there. It had been a busy Easter weekend with my family, filled with egg hunts, play…
Parenting is such a roller coaster. It can thrill and fulfill you, and in the same breath, overwhelm and scare you. Life with kids is full of precious, proud, and funny moments preceded or followed by moments of doubt, worry, research, and planning. It is bittersweet watching your children grow.
Friedreich’s ataxia (FA) changed every aspect of me — the emotional, the physical, the spiritual, and even my personality. Pre-FA Kendall was very different from FA Kendall. I can categorize my friends into those who knew me before my diagnosis and those who met me after. I am blessed to…
Recent Posts
- Scientists link shrinkage of key brain pathway to FA motor symptoms
- My to-do list always looms, but self-compassion helps me manage
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help
- New FA drug nomlabofusp on track for US filing in June seeking its approval