I live by the words, “What doesn’t kill you gives you a set of unhealthy coping mechanisms and a dark sense of humor.”
They help me face Parkinson’s and life with a combination of cheer, sarcasm, and darkness. And a dose of refusal.
I refuse to let this insidious, sneaky, passive aggressive coward of a disease rob me of anything easily. No. It will have to fight harder for what it wants to steal than I fight to keep it. Parkinson’s has taken too much already. None of it without a fight, but taken nonetheless.
I refuse to quit. I persist. In the face of sadness, of loss, of darkness. I persist.
My history of falling is widely known. Down staircases. Down mountains. Off curbs. Across cockpits.
I have seriously sprained ankles. Broken a wrist. Broken vertebrae that resulted in cervical spine surgery, limited mobility, and chronic pain. I have broken, crushed really, exploded truthfully, half of my face. From my nose to my maxilla, to my skull, including my eye and orbit. I was immediately blind in one eye, fighting blindness in the other.
I box my muscles to pain. Stretching and hitting as hard as I can. Running up the stairs. Moving faster than is comfortable. I dance to dizziness, repeating and repeating until I have it right. Only to repeat the process at the next lesson.
The ankle I twisted in dance class last week is worse. “Could it be,” asked my son with a touch of I-told-you-so, “because you push yourself to exhaustion on a daily basis and have continued to dance and box on it?”
I persist anyway.
I lose things – often the same things – regularly. Everyone misplaces their stuff on occasion, and I lose the usual small things throughout the day – keys, lists – the nuisance items. But I also lose the ridiculous – phone, glasses, shoes, purse, coffee cup – all at once. I JUST had it! shouts the voice in my head.
And so began the game “Where is Mom’s [insert noun here]?”
I lose words. Devastating for an English teacher, editor, writer.
“Just give me a noun,” says he.“If I had a f’ing noun, I would,” says she.
And so began the game “What word did Janie mean to use?” Now perverted to “What word can we use instead that would be really funny?”
But I persist. Crossword puzzles. Word games. Organizing my thoughts and space as I once organized multi-million dollar projects.
The vision in my left eye has been a little more limited the past few weeks. My usual check-up revealed an increase in fluid in the center of my retina. There were no signs of new inflammation, just the fluid. So, my doctor increased my prednisolone eye drops from one to four times a day. And I go back in three weeks. I didn’t ask if this event classified as “not stable.” I couldn’t bring myself to do it. To hear those words would have been more than I could handle by myself.
But I persist. I sew great big blankets with little tiny stitches. I bead bracelets with narrow wire. Not a big deal, perhaps, for someone with average vision. Mine is not average.
I read once, “If you’re going to try, go all the way. Otherwise don’t even start … If you’re going to try, go all the way. There is no other feeling like that. You will be alone with the gods, and the nights will flame with fire. You will ride life straight to perfect laughter. It’s the only good fight there is.”
Everything worth having is worth fighting to keep.
And so I persist.