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.
Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps prevent falls. My walker is with me wherever I go, so I am pretty well-known for being “the mom with the walker.” I am pretty OK with that; it’s my reality, so I have accepted it. I am also very open about my FA: the good, bad, and ugly, the scientific, spiritual, emotional, and practical.
However, despite my acceptance and openness, I sometimes struggle with the reality of disability. My walker is the physical embodiment of my progressing disease, a reminder of my failing coordination and dexterity.
When I take pictures or have someone take photos of me, I often move my walker out of the frame if I can safely do so. It may seem vain, but I don’t necessarily want to see my FA when I look at photos. FA is not the main focus of my life, and I choose to not have it visible in every single capture of a memory. That’s a conscious decision on my part to help me focus on the happy and funny moments of my life. My walker, and the disease that caused my need for it, aren’t necessarily “happy” focal points for me.
Kendall and her daughter at a strawberry farm. (Courtesy of Kendall Harvey)
I have a 5-year-old son and a 3-year-old daughter. Whenever we are out and about, they behave like typical toddlers in that they have a hard time controlling their excitement and enthusiasm. Fortunately, my husband has tons of energy, so he usually runs ahead with them. This leaves me to trail along at my safest pace, often watching them have fun from 40 yards back.
When I walk, nearly all of my concentration is consumed by watching my slow, stubborn feet move. I miss a lot when my eyes are glued downward. When I am able to pause to sneak glances up ahead, I am filled with joy by their excitement, but also frustration that I am missing out. I spend so much time staring at my walker and willing it to keep me upright. I don’t need photographs of my walker to remember that frustration; I’d rather that photos capture the joy between my family, friends, and me. If my walker is included in a picture, it becomes all I see.
Photo from Kendall’s perspective with her family ahead in the distance. (Photo by Kendall Harvey)
My choice is not about being fake. I am not trying to change or ignore my reality, nor am I belittling my limitations or expressing embarrassment. I’m not hiding behind perceived perfection. I am certainly not judging others who proudly sport their mobility aids or those who have no other choice. I know that that will be me one day as my disease progresses and my ability to pose without an aid vanishes. When that day comes, I will continue capturing joyous moments while using my mobility aid with a thankful smile.
For now, while I still have the choice, I prefer not to give FA the center stage in my life. I will continue to share the good and bad realities of my personal journey through Friedreich’s ataxia, but there’s more to my story than a walker. I will continue to rotate my social media stage time with the joyful things in my life.
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