What’s wrong?

My walker represents independence to me, but to others it says there’s something wrong with me.

By Teresa Swartz Roberts

Blog Post 53. Copyright 2023

The Boy was three when he first encountered a little person. The man was about my son’s height, middle-aged with a larger head than my son’s and smiling from a broad face with a bushy mustache. We were walking through a discount store. If The Boy had been riding in the cart, instead of at eye level, he might not have been so shocked.

“Whaaat’s that!?” he screamed.

Not “Mommy, why is that man small?” Not “Mommy, look!” Not even “Mommy, what’s wrong with that man?

As I felt my face go red, I said, “That is a man. People come in all shapes and sizes. Mommy and Daddy are large, and that man is small.”

To children, anything different is wrong. That’s why diversity exposure and learning are so important.

People with disabilities get used to hearing children ask, “What’s wrong with her?” It’s human nature. So what’s wrong with asking the question? Nothing. I just feel that wrong is the wrong word.

I think it’s because of the underlying associations with the word wrong, such as when it’s used in place of the word evil. It’s so final, so black and white, to say, “You know the difference between right and wrong.”

Or maybe it’s just that I don’t want there to be anything wrong with me. 

A member of an online Parkinson’s support group I’ve been watching said recently that she no longer says Parkinson’s Disease because she is not fond of the word disease. She says it makes a lot more sense to call it a condition. Maybe she’s right. 

But maybe the issue isn’t that condition is a better word than disease. Maybe it’s that condition has come to describe how we feel about having Parkinson’s disease, or just plain Parkinson’s, if we’re avoiding saying the word disease. In fact, the name has been shortened to Parkinson in many contexts, probably because the English language is doing away with the apostrophe as it evolves.

We always say we don’t want to let a disease define us. I am not Parkinson’s disease. But it has become a big part of my identity.

You can’t meet me without knowing that there’s something not usual, not normal, not right about my slow gait, my hunched posture, or my hoarse voice if my meds are wearing off or my flailing appendages, nodding head, and restless legs if I have a little too much medicine in my system. My movements are confusing to the people around me because I look better when I feel worse and look worse when I feel better. It’s difficult to describe the difference between what most people do and what I do. 

I don’t mind being different. I do mind being wrong. There’s no shame in being different. Or there shouldn’t be.

I usually embrace difference. However, it is not a matter of being an outlier in this instance. There is a disease process taking place in my brain. The cells that make dopamine and keep it where it belongs in my body are going, going, gone.

I am still living, moving, smiling, writing, whatever I’m still able to do, in spite of Parkinson’s. Yet I don’t treat it as the enemy. It’s more of an annoying relative who came to visit and is never leaving, no matter how obviously I hint that it’s time to go.

I don’t keep it a secret. (That would be impossible at this point, anyway.) In fact, I take it upon myself to let everybody know everything I know about Parkinson’s and its effect on my life.

This blog is called Life through the Lens of Parkinson’s. Under the title are these words: “Parkinson’s changes life. It’s still life.”

Not a life that’s wrong, a life that’s different. And there’s nothing wrong with that.