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.
We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could tell us the story. What celebrations, collaborations, conspiracies, or moments of genius have those walls witnessed?
What have our own walls witnessed?
I often wonder the same thing about the wheels of my walker.
My walker has been a constant part of my life since January 2019. It has been there during so many moments. If my wheels could talk, what story would they tell?
Would their story be one of triumph and adventure? A heartbreaking tale of struggle? A heartwarming story about an inspiring girl who is overcoming the odds? A bitter tale of physical defeat? A simple story of a wife and mom just doing her best to get through each day?
I think my wheels would tell a complex story that blends all of these themes.
Life with Friedreich’s ataxia isn’t simple or easy. It can’t be painted with broad strokes and whitewashed into one simple storyline. Every day presents new challenges, and every progressing symptom derails the narrative and changes the tone of the story.
I live scenes from all types of chapters, every day. When I wake up, for example, I take my investigational treatment from a clinical trial and then grab my walker to get out of bed and start my day. Some days I move more slowly because my restless legs are sore and uncooperative as I try to get going. Other days, I don’t have time to think about my body because my children are dragging me out of bed to help them start their day.
My walker is there for all of these moments during my day, including the good, the bad, and everything in between. My wheels carry me through it all. They see me at my best and at my worst.
My walker acts as both a laundry hamper and a sous-chef as I do monotonous domestic tasks around the house. It helps me sneak out of my daughter’s room after I tuck her into bed at night. It braces me and prevents me from falling when I become unsteady. It helps me trek through the yard to push my children on the treehouse swings.
My walker rides in my car to assist me during physical therapy, visits with friends, and while running errands. It is parked by my bed, ready and waiting, while I sleep.
My walker has been to Italy, Disneyland, the beach, and the mountains. It has accompanied me to weddings, preschool drop-offs, church, meetings, game nights, and holidays. It even rolled off a boat marina and into a lake! It has wheeled through airports and hospitals to help me participate in a clinical trial. Those wheels have been on many adventures.
If my wheels could talk, I think they would accurately tell the tale of a young woman doing her best in the face of a progressive, degenerative disease. They would tell of my gratitude for their service and constant aid. They would tell of my resentment of my dependency on them. And they would tell of the beautiful life I’ve been able to continue leading. Because at the end of my story, my wheels say: “To be continued.”
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