I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link or just keep scrolling below.
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 am feeling about that. They join my pity parties, cheer me up, and cheer me on.
When I try to put myself in my friends’ shoes, I have some realizations. Since FA is so rare, all-encompassing, progressive, and debilitating, keeping tabs on me is a laborious 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.
Dear friend,
I love you. I appreciate you. You are an amazing person, and I love being your friend.
I know that FA is extremely difficult to relate to unless you have endured the disease yourself.
Unfortunately, FA is a huge part of my life, so it makes up a large percentage of my daily drama. I know that it can be overwhelming when I dump my huge problems on your conscience. Please know that I share with you because I value our friendship and strive to be transparent and truthful with you.
Secondly, I’m not laying my problems at your feet with the expectation that you’ll fix them. I’m usually just trying to share a glimpse into my reality to deepen our friendship and grow closer. Empathy, prayers, words of encouragement, or just big hugs are all wonderfully appreciated responses.
Just as I’m rolling with the punches and figuring out how to live as a progressively disabled woman, you’re learning how to be friends with a progressively disabled woman. There are no stupid questions, and there’s never a wrong thing to say, because I know your heart and understand where you’re coming from. We’re all figuring it out together, and having you by my side makes this disability journey less lonely, daunting, and scary.
I want to be there for you the way you are there for me. Don’t ever think, “I can’t complain to Kendall about this. Look at all she’s going through! My problem seems so small and silly in comparison.” It isn’t. Your feelings and life experiences are just as valid as anyone’s, and I want to know anything you want to share. FA has taken away so much from me, I’d hate to let it take away a chance to deepen a friendship, too.
Thank you for seeing past FA and just seeing your friend Kendall. Thank you for providing a sense of normalcy in my abnormal life. Thank you for finding a way to shake me out of my funks and focus on all of the wonderfully complex things in my life apart from my genetics. Thank you for making me laugh. Thank you for crying with me. Thank you for the reminders that no matter how terrible today may be, tomorrow is a new day.
Know that whenever someone tells me that I’m “inspiring,” I immediately think of my village. I think of my friends who hold me up when I’m crumbling in defeat. I think of the kind, encouraging words of support you poured into my life to get me to where I am now.
Thank you for sticking by me through the good times and the bad. I know that FA has a lot of bad in store for me, but I also know that my amazing friends will get me through it.
Gratefully yours,
Kendall