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.
When you are the parent of kids ages 5 and 3, you read lots of fairy-tale books and watch countless Disney movies. You become part of the wonderful stories and see hardworking ladies becoming princesses, toys saving the day, friendships defying the odds, families overcoming adversity, romances growing stronger, and animals making unlikely friends. In short, you get to enter a dreamland where anything is possible.
I recently watched Disney’s “Cinderella” with my kids. In it, Cinderella sings a song titled, “A Dream Is a Wish Your Heart Makes.” It got me thinking about my dreams.
Kendall and her family meet Cinderella at Disney World. (Courtesy of Kendall Harvey)
When I was diagnosed with Friedreich’s ataxia (FA) in 2013 at the age of 25, my dreams subtly changed. I slowly stopped dreaming about grand adventures and exciting activities. My dreams became simpler and calmer.
I was slowing down, and my dreaming self began to imitate my awake self. I suddenly realized I could no longer run or jump in my dreams. I wasn’t the hero of my dreams anymore.
I began using a walker full-time in 2018. About three months after that, I began seeing my walker in my dreams. I was so discouraged. It felt as though my subconscious and my heart had given up on my true dream of finding a cure for FA and no longer needing my walker. It seemed as though my entire self had accepted FA as my reality, and my escape from reality was gone.
Most fairy tales have some sort of adversity or antagonist — something for our heroes to overcome. Often, that is where we meet the villain of the story.
FA is the villain I never saw coming. It’s the kind of villain no one prepares you for because it’s so unexpected. It’s a smart and relentless villain. Just when you think you have adjusted to the new challenge FA has thrown your way, a new plot twist occurs.
For example, I have grown used to my walker, which helps me stay safe on two feet. (I’m going on 100 days without a fall, knock on wood.) But recently, my FA has taken hold of my feet and caused painful new symptoms including cramps, clawed toes, high arches, and a dangerous loss of sensation. It’s always back and forth.
FA is not the stuff of dreams. It’s the making of nightmares. It’s not the adversity I planned to face in my fairy tale, nor is it a simple villain to overcome. However, I still root for the hero, which in this case is anyone battling FA.
Revisiting these fairy-tale adventures with my kids makes me nostalgic for the carefree days of my childhood, before my future was controlled by a cruel and relentlessly progressive disease. I am so thankful that their eyes still fill with wonder and their dreams are full of hope from these stories.
I appreciate the underlying narrative of the stories in which kindness, strength, goodness, love, and bravery triumph over hardships. I know that real life is not a Disney movie, but I will keep wishing and dreaming for my fairy-tale ending: a cure for Friedreich’s ataxia.