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.
Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey. Even our closest friends and family members, who know us better than anyone, can only imagine and sympathize, as they don’t face the same physical struggles.
Unless you have Friedreich’s ataxia (FA), you don’t know the heavy heartache of being unable to trust your own body. You can’t comprehend the suffocating fear of waiting to see which body part or ability FA will attack next, and how that will affect your life. You don’t understand the frustration of being trapped in a failing body that you desperately want to escape — even if only for a moment.
FA is painful, scary, humbling, draining, and overwhelming in ways I can’t begin to communicate.
But I have good news, FA community! You’re not alone. Your journey with FA doesn’t exist in a vacuum. You are seen. You are heard. Your battle matters, and you are changing the world for the better, whether you know it or not, whether you aim to or not.
I find it so strange when strangers say things like, “You’re so brave,” “Good for you for not letting your disability stop you,” or “Your strength and perseverance are inspiring,” when I’m heading to my son’s Little League baseball game, walking around the zoo with my kids, or going on a date with my husband. I don’t think I’ll ever get used to those sentiments. How strange that simply going about my life can affect someone else! By not letting FA sideline me, I’m inspiring other people who are facing struggles I know nothing about.
This inspires me to keep sharing my story in my intentional efforts to raise awareness of FA. I hope to make the world a better place and bring about a cure for the disease, one way or another.
FA patients are thrust onto a platform, whether or not we seek it out. We’re making the world a more tolerable, accessible, patient, hopeful, and healthy place just by being ourselves. Any efforts we make on behalf of the FA community are just icing on the cake.
So, to my fellow FA patients, keep living your life, sharing your story, and putting a name to your disability. Who’s to say that the next $20 you raise won’t be the donation that completes funding for a clinical trial, or that your story won’t inspire a scientist to think of a new approach to curing this dreadful disease?
Lastly, I hope to remind you that all of your feelings about FA are valid. It’s completely understandable to be sad, mad, scared, frustrated, bitter, and jealous. The soul-crushing disbelief I experienced upon receiving my diagnosis was quickly followed by a sense of validation. I could point to the cause of my struggles. There was a method to the madness that was attacking my body. What a strange mix of feelings that day brought.
It helps me to know that others have experienced those same feelings, and that there’s a whole community surrounding the 4,000 Americans who are living with FA.
While the journey may be lonely, you’re not alone. The hope that you desperately seek and cling to is real. Scientists all over the world are fighting for a better future for you. Patients all over the world are walking the same journey as you. The hurt you feel is shared by your community. Your struggles can make or break you, but your community is always here to help.
As A.A. Milne, author and creator of Winnie-the-Pooh, said, “You’re braver than you believe, stronger than you seem, and smarter than you think.” So keep shining. Keep fighting. We’re in this together.
“We are pushed hard from all sides. But we are not beaten down. We are bewildered. But that doesn’t make us lose hope.” — 2 Corinthians 4:8 (New International Reader’s Version)
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