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 may not like my body, but I respect it.
I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all have something. You might wish you were taller, that your nose was different, that you were in better shape, that your hair was different. Some of the problems can be fixed with hard work, some can be fixed by a surgeon or a visit to a salon, and some you just have to accept and move on.
When I say “I hate my body,” it’s not meant in a vain way or a fishing-for-compliments way. What I mean is, “I hate my disease.” It can be exhausting to have Friedreich’s ataxia (FA). And it is really hard to have your body slowly fail you because of your very DNA. I often wish that things could just be easy, even for a single day.
Walking across the room to pick up a remote or grab a glass of water might be nothing to most people. But for me, it is physically difficult and mentally taxing. I have to decide if it’s worth it, convince myself that I have enough energy to complete the task safely, and then I have to make my body cooperate.
Every step I take has to be thought about. I don’t do anything mindlessly. Every physical act by my large muscle groups is a conscious effort. My body is working overtime just to function in a “normal” capacity. What I mean by normal is completing daily tasks (taking care of my kids, running errands, housekeeping, and maintaining a social life when my schedule allows).
It may not seem like I’m asking a lot of my body. I’m not pushing myself to Olympic perfection in gymnastics. I’m not training every day to compete in an Iron Man competition. I’m not standing in an operating room performing intricate 15-hour surgeries. But I am pushing my body beyond its comfort zone. I’m pushing my body to fight against its destiny to let me function “normally.”
I may not like my body, but I respect how hard it works at my command. I ask a lot of a body that is battling FA. Every minute of every day, I am fighting against my body’s predisposition. I push my body. I am going against my physical destiny. And I really respect my body for fighting that hard for me.
It is hard to be mad at my body when it has truly given me so much. I’ve seen beautiful things in exciting places. I’ve tasted and cooked delicious food. I got to play sports all through high school and dance at my wedding. And most importantly, my body gave me two absolutely beautiful, perfect, and healthy children.
I definitely have a love-hate relationship with my body. Yes, my body fails me often because of FA. Since 2013, there hasn’t been a single day in which I haven’t thought or said, “I wish that I didn’t have FA.” I wish that things came naturally to me, that it was easy to be me. I wish that my body didn’t have to work so hard. But I am really proud of my body, and I respect how hard it does work. I am thankful that I can still push myself.