Twelve Days of Christmas 2020 Day three

“I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are "handicapped" and "disabled." Snip.

“As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. "Disabled," by contrast, suggests any incapacity, physical or mental. And I certainly don't like "handicapped," which implies that I have deliberately been put at a disadvantage, by whom I can't imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life.” Snip

“But I don't care what you call me, so long as it isn't "differently abled," which strikes me as pure verbal garbage designed, by its ability to describe anyone, to describe no one.”

Nancy Mairs, On Being a Cripple

Over three decades ago, I read On Being a Cripple, and I’ve had a great respect for it since. Partly, it solidified some of my own thinking on how I viewed my body. Reading the essay gave me the opportunity to find someone else who understands what it is like. Having your body be at war with your sense of self. Feeling like you are a massive inconvenience and a liability to the people around you. Every day, the awareness that you are in some way broken, and must be willing to ask for less, to expect less, to take your infirmity with willingness and good cheer. I must be Tiny Tim, chirping “God bless us, every one.”

There is no way we can acquire permission to be otherwise—to cry, or rant, or sulk—when we are to be eternally upbeat. Fat people are jolly, damaged people are jokesters, and cripples are sunshiny and brave.

It gets old.

In those years, my health emphasis was on the lack of function in my right hand. It is weak. Muscles have atrophied, the skin on my palms is noticeably more sensitive, and I cannot move my fingers independently of one another. This began when I was three, at the same time I had my first seizure. My seizures affect my right side, and it was obvious the two were connected. I didn’t want to exercise it, even though my parents kept persuading me to. Beyond sheer stubbornness, I’m not sure why. I do know the fastest way to get my back up is to insist I do something.

For years, I put my right arm across my abdomen, as if to hide my hand from everyone. If I tried to use it, the people in my family would watch me. I hated being watched, being stared at, and would cease whatever I was doing to make them stop. I had had too many people stare at me when I had seizures to want to be further placed under a microscope.

I did attempt to strengthen the hand, through my own decisions and not someone else’s plan for me. I had some occupational therapy, which likely helped my outlook more than it did my hand. Thinking about it now, it felt like everyone watched me to see my failure. Truthfully, only my family paid much attention, though it felt like the world knew and judged me for the lack.

I met my husband. Over the course of two or three years, we went from acquaintances to friends to soulmates. After we married and moved two thousand miles away, we found a neurologist for me. I hadn’t seen one in years, and she wanted me to be tested—CAT scan, MRI, yadda yadda, yadda. The results showed I had suffered a stroke at the same time my seizures began. Years of thinking the hand problems were directly connected to the seizure disorder vanished, and it made a great deal of sense.

What I did not know was children with Sturge-Weber syndrome are likely to have strokes. It happened to me, and no one spotted it. My husband researched the condition at Mass General Hospital, and it was there in print. Young children can die of stroke. He never made the connection between my hand disability and the risk of stroke, but once we knew it was obvious.

I’ve since stopped caring so much about my hand. I have enough use of it for my needs. No one watches me anymore, and my husband and kids have a healthy your-body-is-not-you outlook. Several years ago, my brother developed a lung ailment, and I told him he is not his disease.

I think of myself not as someone who has seizures, but as someone who is coming closer to January 19, the third year anniversary of my last seizure. I don’t consider my hand a defect. I don’t need full function to live a happy life. I am happy, not because I’m a good cripple, but because where it matters, I’m not crippled at all. I read, write, think, love, laugh, and play daily. I am filled with joy, and that’s the healthiest life I can have.

Being free from that thinking is a beautiful thing. Since I have a weakness for songs about freedom, I give you k.d. Lang performing I Will Survive.


{link: https://www.youtube.com/watch?v=KgQeLsCvQFk&list=RDKgQeLsCvQFk&start_radio=1}