I choose not to be embarrassed by my disability

Living with a visible disability caused by Friedreich’s ataxia (FA) is no simple feat. It takes a lot of trust to simply get out of bed. I have to trust that the Skyclarys (omaveloxolone) I take every morning will have more benefits than side effects, and that my mobility aids and grab rails will support me safely throughout the day.

Then I have to muster the confidence to face the world.

I know I’m probably not what most people expect a 38-year-old mom of healthy elementary-age kids to be like. I am sure I’m not what a classroom of students expects their substitute teacher to look like. Restaurant hosts and store greeters usually have to process my reality for a moment before helping me. I have gotten used to this after six years of depending on a walker and eight months of requiring a wheelchair.

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During these moments when other people have to adjust their expectations, I smile, wait patiently, and do my best to handle whatever comes my way with grit and grace. The way I see it, I can either be embarrassed by my disability or I can do my best to enjoy life despite it. The vast majority of the time, I choose to enjoy life.

I can’t hide my disability, nor do I believe it is anything to be embarrassed about. I am open about FA and willing to address any questions or concerns. I relish the chance to educate people and normalize disability.

Obviously, I’m aware that my body functions differently from most people around me, but this isn’t something I chose, nor can I “fix” it.

I have been teaching my children the “five-minute rule”: Before pointing out an aspect of someone’s appearance, ask yourself if it’s something they can fix in five minutes or less. For example, if your buddy has food stuck in their teeth, ketchup on their shirt, jeans tucked into their sock, or a messy ponytail that needs to be redone, those are issues you can gently point out to them. But if it’s something that can’t be addressed quickly, such as their height, a stutter, an allergy, or crooked teeth, it’s best not to say anything at all, especially in a group setting.

FA isn’t something I can “fix” — and certainly not in five minutes. In general, people are kind about my obvious physical disabilities and offer help. This enables me to navigate life with FA with grit and grace rather than embarrassment or shame.

I know I am doing my best, and that is really all I can do. After all, I was made on purpose, with a purpose, and for a purpose.

“I prayed to the Lord, and he answered me. He freed me from all my fears. Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.” — Psalm 34:3-5

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.