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.
When you’re a parent of preschool-age children, there’s a large focus on teaching the concept of opposites. Big and small, nice and mean, wet and dry, strong and weak, happy and sad, and so on. The illustrations usually make young children giggle, but the idea also teaches them to make valuable observations about the world, which can help them start to develop a perspective through which to filter information.
Lately, my daughter, Collins, who graduated from preschool in May, has been vocally curious about my health situation with Friedreich’s ataxia (FA). She makes a comment every day about my legs, whether she’s asking if they hurt sometimes or wishing they worked so that I didn’t need my walker and could still run and play. I know her comments come from a place of loving concern, but they still make me think about her perception of my struggle.
I think that, as she sees more of the world, she’s noticing that I’m different from most moms, and she’s curious about it. Why does her mom have to use a walker? Why can’t her mom carry her? Why can’t her mom run? Why does her mom have to fly to Atlanta for doctors’ appointments?
My children know the basics of my battle with FA, and we are slowly, gingerly, and intentionally revealing age-appropriate information regarding the specifics. But in the simplest preschool world of opposites, I think my daughter sees “normal” moms, and then she sees me.
This got me wondering: Is normal the opposite of FA? And if not, what is? Healthy? Able-bodied? Is it possible to break it down in stark, black-and-white terms?
When I become extremely frustrated about the endless struggles of life with FA, I often find myself crying out, “Ugh, I wish I didn’t have FA. I just want to be normal!” So I guess that if I had to choose the opposite of my experience, it would be normal. But the opposite of normal is abnormal, and I’m not satisfied with that. Life with FA is so much more than the oversimplification of “abnormal.”
Life with FA is complicated, hard, scary, painful, challenging, ever-changing, and humbling. The challenges FA patients face get bigger and more numerous every day. There’s no doubt about it — FA is a difficult hand to be dealt. That’s not to say that every aspect of a patient’s life is negative. I still have an abundance of joy, growth, opportunities, fulfillment, possibilities, love, and hope.
Since I don’t think life with FA can be captured in one word, I don’t think the opposite can be, either. My life may not be “normal,” but as the saying goes, “Normal is just a setting on a washing machine.”
I don’t have to exist in a world of polar opposites, labeling my life as abnormal and the lives of everyone who can function without a mobility aid as normal. Who am I to determine how others view their existence?
There is so much good in my life that far outweighs the bad of FA, so all I can do is continually strive to find peace and fulfillment in the gray area between abnormal and normal, disabled and able-bodied, diseased and healthy.
“You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy.” — Psalms 30:11 (NLT)