While in a mall or some kind of store, I have often seen, out of the corner of my eye, a young child staring at me in my wheelchair. Sometimes, I can hear the little voice innocently ask the question to Mom or Dad, “What’s wrong with her?”
Out of the mouths of babes…. Usually, the parent responds with an embarrassed kind of hushed whisper, encouraging the child not to say things like that. But, why not? There is certainly nothing wrong with a child who is filled with wonder and curiosity – in fact, witnessing such innocent perplexity, sometimes amazement, and the pure desire to know is exquisitely beautiful to me. There is no masterpiece created by any artist in the world that is more inspiring and powerful than that little boy, that little girl, with the intently looking eyes and the head cocked, pondering. A child, I may add, that trusts the guarding adult to know and to teach well.
Of course, the adult usually doesn’t know what to say. Sometimes, there will be a simple, patient response and I carry on as if I never heard. It’s when the parent is embarrassed and shushing that I try be there for the child. If I am near enough and I don’t have to turn in order to have the child in my sight, I have sometimes given answer myself. “I can’t walk because my legs are too weak, they’re not strong enough. My body is just made this way,” I say gently, with a little smirk, sharing the weirdness of it with the child, and then a smile to show that is not such a terrible thing.
I admit, though, I haven’t done this as much since my scoliosis has flopped my head over onto my left shoulder. A short answer seems too simplistic and unsatisfactory, now. But, then again, come to think of it, I haven’t heard any small children asking what’s wrong with me in a long time. Perhaps, they are too busy demanding items that they want in the store aisles or too distracted from the world around them by some handheld device. If so, that makes me sad.
It’s partly for these reasons that I recently made a video to describe my disease. (To watch it, click the YouTube video below – and laugh at the freeze-frame image. Yikes!) Mostly, however, I made it for the adults who think the question but, unlike children, never say it out loud. If you have seven minutes or so, I hope you’ll watch it. I could have written it all down in an 1100 word essay (I know how long because I did it) but the answer would just be dry science – not the living reality of a human being. (By the way, this video is my first attempt to go “off script”, so you’ll probably see that I’m a better writer than speaker – or maybe that won’t be your conclusion. I don’t know. Everybody’s different, after all.)
Warning: you may or may not feel bad for me as you watch me breathe and speak. Please don’t feel bad. Well, okay, feel a little sympathy, I would actually appreciate that as my breathing is getting more difficult. But, it’s a beautiful and glorious thing that I am breathing and speaking – so, praise God (yup, praise Him) and give thanks for the gift of life.
© 2017 Christina Chase
Although crippled by disease, I am fully alive in love. I write about the profound wonder and terrible beauty of life while living with physical disability and severe dependency. Unafraid to ask life's big questions, I was briefly an atheist and considered other religions before finding, in God's choice to intimately share our humanity, what it truly means to be fully human. A revert to the Catholic Faith, I blog weekly and have written a book called It's Good to Be Here.