When you’re a parent of preschool-age children, there’s a large focus on teaching the concept of opposites. Big and small, nice and mean, wet and dry, strong and weak, happy and sad, and so on. The illustrations usually make young children giggle, but the idea also teaches them to…
My Darling Disability - a Column by Kendall Harvey
When you live under the banner of a degenerative disease such as Friedreich’s ataxia (FA), you become well acquainted with fear. You fear what your body has in store for you tomorrow, next month, next year, and the years after that. You fear falling or accidentally doing something that…
Friedreich’s ataxia (FA) is incredibly rare. So rare, in fact, that I’d never even heard of it before I was diagnosed with it in 2013. Getting that rare, 1-in-50,000-people diagnosis (given to an estimated 2,500 people in the United States) has had a huge impact on my…
Life with Friedreich’s ataxia (FA) can feel daunting as we face hardships, struggles, and countless tribulations. Most FA patients I know have a positive attitude and try to keep moving forward despite what FA throws in our paths. We don’t necessarily like our diagnosis, nor do we like…
I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?” People don’t tend to think of an obvious explanation as to why a healthy-looking, 34-year-old woman is using a walker, so they just ask…
I often write about how important it is to have a strong village supporting you in life — not only for big things like parenting and disabilities caused by Friedreich’s ataxia (FA), but for all the ups and downs. I’m incredibly blessed to have several villages, including my…
I am the first to admit that I am a Disney fanatic. I have always loved the replicated ideas in Disney movies that friends and family can come together and discover strengths they never knew they had to help good triumph over evil. So, naturally, I love going to Disney…
Since the beginning of my journey with Friedreich’s ataxia (FA), worries about the future have plagued me. Would I have a future? What would it look like? As I learned more about FA, one word stood out: progressive. Everything boiled down to progressing symptoms: My balance and coordination…
It’s not uncommon for me to throw myself pity parties. Living with Friedreich’s ataxia (FA) is a constant battle. I have to choose to be strong every moment of every day and to keep fighting for independence, normalcy, safety, and hope. It’s exhausting to maintain the defensive wall that…
Throughout my journey with Friedreich’s ataxia (FA), I’ve wrestled with people calling me an inspiration. My feelings about it have changed and progressed just as quickly as my disabled body. When I was diagnosed with FA in 2013, my symptoms were relatively mild. The only things I couldn’t do…
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