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.
Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining.
In the decade that I’ve been living with FA, I think my most common complaint is the daily struggle to find a balance (no pun intended) between harmoniously embracing my life and physical limitations and giving life to my negative emotions. Do I ignore the difficult realities of FA, or do I make a productive choice to accommodate my disability?
It’s hard to find a perfect balance, especially when the weights on both scales seem to change constantly. I recently had two separate experiences with my children that highlighted how emotionally raw the daily struggles of FA leave me and those around me.
Emotional highs and lows
It’s no secret that I’m obsessed with movies. I frequently reference them in my column, and because of my children’s ages — my daughter, Collins, is 6, and my son, Brooks, is 9 — I watch a lot of children’s movies. These often stir up feelings I realize I’ve been ignoring. It seems the swirl of emotions caused by FA is closer to the surface than I previously cared to admit.
I recently watched “Rookie of the Year” with my baseball-obsessed son. In the movie, an 11-year-old named Henry breaks his elbow, and his tendons get wound up so tightly while he’s wearing his cast that he ends up being able to pitch amazingly fast. In a funny turn of events, he gets recruited to pitch for the Chicago Cubs.
There’s a scene where Henry, his mom, and two of his buddies are running with him to the game. Brooks reached over and held my hand and softly said, “I wish you could run, Mom. I’m sorry that you can’t.” The unsolicited sentiment he expressed at that moment simultaneously shattered me and made my heart burst with love. I just squeezed his hand and said, “Me, too, buddy.”
In truth, I have the exact same thought countless times a day. I felt so validated that someone else thought the same thing. I also felt brokenhearted that Brooks will never have a mom who can run with him. His reality is so different from most kids, and that makes me sad.
I also watched the animated movie “Encanto” with Collins. Encanto is about a multigenerational family in Colombia. Almost every member of the family is blessed with magical abilities, such as super-strength, communicating with animals, seeing the future, controlling the weather, and so on. The main character, Mirabel, is the only one without a gift, and no one knows why.
There’s a scene where she sings about her feelings amid a joyful family celebration. The song is called “Waiting on a Miracle,” and I get emotional every time I hear it because it perfectly describes how I feel when I’m sitting and watching my blessed family shine.
Mirabel sings, “I will stand on the side as you shine/ … I would move the mountains/ Make new trees and flowers grow/ Someone please just let me know, where do I go?/ I am waiting on a miracle/ I would heal what’s broken/ Show this family something new/ I’m sick of waiting on a miracle, so here I go.”
While Mirabel was singing her ballad, a few tears escaped my eyes, as per usual, and Collins noticed. She, too, grabbed my hand and said, “We are waiting on your miracle, Mom.”
I must be doing something right to have raised such compassionate kids. They are obviously more attuned to my struggles, challenges, efforts, and triumphs than I realized. That makes my continued search for balance worth it.
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