Using my unexpected platform to be a positive role model
I didn't choose to have FA, but I can choose how I respond to challenges
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This morning, I did something I rarely do: I asked my children for help with writer’s block.
Every Monday morning, I sit down at my computer to write about whatever is in my heart or on my mind as it relates to living with Friedreich’s ataxia (FA). My column topics usually find me during the week. I will have some experience, interaction, or appointment that prompts me to reflect on how my perspective on the world has changed due to my journey with FA and its various symptoms, and then I’ll attempt to convey that in relatable and encouraging content.
Nothing was coming to me today, so while we were chatting by the fire and enjoying breakfast before school, I turned to my 11-year-old son, Brooks, and my 8-year-old daughter, Collins, and asked, “What should I write about today?”
They gave a few silly answers, such as, “Write about your dream where the herd of baby cheetahs came into our backyard!” But then Collins said, “Write about how it feels to be a role model because you have to live with something that you don’t really like because it keeps you from doing a lot of the things you want to do.”
I immediately had so many thoughts, including how proud I am of my precious daughter for thinking so deeply about how others feel.
Choosing positivity
I have often reflected on the unexpected platform I’ve found as an unofficial ambassador for people with disabilities. In my daily life, I frequently notice that I am often the only one using a walker or wheelchair, which gives me the chance to make a positive impression on those around me, especially young kids.
I suppose, with that, my children view me as a role model. While that is an intimidating prospect — one I didn’t necessarily seek for myself — I frequently have the unique opportunity to not only normalize disability, but also to demonstrate positive ways of reacting and moving forward when things don’t go the way I wanted.
When I have to sit and wait for parents to move out of my path, their children notice because I am at their eye level. A polite smile and quick “Thank you!” can convey a much more positive impression than being bitter and grumpy at the inconvenience of having to slow down for a few seconds.
When I have to roll around to a building’s side or back entrance because the front path isn’t accessible with my mobility aid, I can control my reaction. When the adults I am sitting with get up to grab something, play with their kids, or just do something I can’t do, I can control my body language and facial expressions.
I can choose to be a happy and positive presence, despite my limitations, or I can let those limitations make everyone feel sorry for me. Personally, I choose positivity over pity almost every time.
Is that the best or healthiest approach in all situations? Maybe not. But it helps me navigate the turbulence of life with FA with a smile on my face rather than a chip on my shoulder, so I plan to continue choosing positivity whenever possible.
“O man, He has told you what is good. What does the Lord ask of you but to do what is fair and to love kindness, and to walk without pride with your God?” — Micah 6:8
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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