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 childhood friends, neighborhood friends, church friends, and friends I have made through my children’s schools and sports.
I know beyond a shadow of a doubt that my friend villages have saved me countless times. They physically help me get through the day safely by holding my arm, getting my mobility aids in and out of my car, or carrying things for me. My friends express genuine interest and concern about my mental health, thoughts, and feelings. They ask how I am doing, FA-wise, and how I feel about that. They join my pity parties, cheer me up, and cheer me on.
When I try to put myself in my friend’s shoes, I have some realizations. Since FA is so rare, all-encompassing, progressive, and debilitating, keeping tabs on me is an uphill task, but one that so many wonderful people take on brilliantly. I am more appreciative than I could ever articulate, but I wanted to try. Therefore, I have a few things I’d like to share with my friends in an open letter.