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.
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 husband is the head coach of my son’s team, so he helps the 12 boys, ages 6 to 8, pack up their helmets, hats, water bottles, gloves, bats, and other paraphernalia in the dugout, leaving my daughter and me to manage ourselves.
The area around the field that we regularly play on is quite hilly and uneven, so it is unsafe for me to maneuver independently due to my Friedreich’s ataxia (FA) progression. I am normally forced to sit patiently while waiting for someone to help me up, make sure my walker is on steady and even ground, and fold up my chair.
On that day, the game went into extra innings, and I was eager to get home to feed and bathe my kids so that we could get to bed at a reasonable hour. I suddenly became so frustrated by my disability and the fact that it renders me unable to do the simple tasks that everyone around me can do.
Usually, I can rein in my frustrations and keep a positive headspace, but I just couldn’t that night. I desperately wanted to pop up and pack up, and I had almost convinced myself I could until I realized that my body had truly forgotten how. I had become so used to receiving help that I had no muscle memory of how to do the tasks independently. My body had completely forgotten how to function and, in a way, be “normal.”
This wasn’t the first time this had happened to me.
One day at physical therapy, I was telling my therapist that my kids had been playing hopscotch on the sidewalk that weekend, and I realized I couldn’t remember the last time I’d jumped. As a former tumbling cheerleader and high school track and field athlete who’d competed in the long jump, triple jump, and high jump events, this was a shocking and sad realization.
So, my physical therapist thought of a safe way for me to try jumping again. She had me lie on the Total Gym, which has a large landing area for your feet. She had the safety break engaged so that if I missed, my momentum would stop before I could slam down and injure myself.
I lay there for a few moments, and she asked if I was OK. I replied, “I am just trying to remember what to tell my legs. My body doesn’t remember how to jump, so I don’t know what to do.”
I started by doing squats. My therapist then encouraged me to push through my legs harder and faster, and work my way up to a jump. It certainly wasn’t pretty, but I eventually “jumped,” meaning that my feet were simultaneously an inch or two off the landing area for a fraction of a second. But I was so proud of myself. I technically jumped!
A common saying is “use it or lose it.” I never realized how applicable that would be to my life, and how frustrating those losses would be. The adaptations I’ve made for safety due to my degenerative FA symptoms have made my body “lose it.” I’ve lost my muscle memory I used to retain by leading an independent and active life. My body has forgotten how to be “normal.”
But what I often find myself repeating when I become frustrated with my fading independence and abilities is that my normal will look different than other people’s normals because I am made differently. And that’s OK. It’s OK to be different. It’s OK to get frustrated. It’s OK to fail. It’s OK to try. And it’s certainly OK for other people not to experience the struggles that I experience as an FA patient.
My body may have forgotten what it’s like to be “normal,” but the accompanying feelings of frustration, longing, and struggle are completely normal. Everyone, disabled or not, wrestles with those feelings. It is all part of the human experience. I just have extra opportunities to learn how to process and channel those feelings.
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