Friday, August 27, 2010

Waking Up

They say you are only as old as you feel. That puts me at right about ninety-two years this week. I dozed off at the table on Monday night, even though we had seventeen people over for dinner. Yesterday I found myself waking up at my keyboard, in the middle of a sentence that petered out in a long string of “rrrrrrrrrrrrrrrrrrrrrrrrrrrr’s” from where my finger landed when drowsiness overtook me. Lately if I sit down for long, I’m out cold. Bob never knows whether to wake me up when he finds me conked out in an unconventional nap-spot or to just let me sleep. A friend jokingly compared me to Mr. Bean’s narcoleptic character in the movie Rat Race. It does seem comical, especially since I know that the sleepy stupor will end as soon as my body adjusts to its new dose of Mirapex. I had to bump up the dosage on my Parkinson’s medication this week. I’m trying not to look at it as a defeat. I'm trying to wake up.

There are good days and better days with Parkinson’s. Some days I almost forget that I have Parkinson’s at all. Life rolls on and I have learned how to compensate somewhat for my stiff, listless left side. Amazing how quickly I caught on to all the little tricks that make my symptoms less conspicuous: keep a tremoring hand firmly jammed in a pocket; encourage a dragging left foot with a mental “march” step; always pick up a breakable item with the right hand; don’t hurry; buy slip-on shoes and clothing with no buttons; don’t dwell on limitations; consistently override my body’s protests and take on physically challenging activities. Sometimes, on the better days, I can almost forget.

But other times I find myself face-to-face and toe-to-toe with my disease. We square off and stare one another down. She is silent, deliberate, confident of long-term triumph. I try not to blink first or avert my eyes. If I stand my ground and study her without fear I see that she is as beautiful as she is terrible. “This is not personal,” she tells me without words. “It must seem that I have come to rob you slowly of life.” She smiles. “And I will take what I will take, it’s true. But look what I bring in exchange.” The gifts she offers flash and burn in the air around us. Patience. Trust in God. Hope as hard as iron. Empathy. Wisdom. “You can have these in time. Wake up.Walk with me. Come.” There is nothing for me but to take her outstretched hand and move forward—wiping the drool off the corner of my mouth and dragging my left foot as I go.

People comment occasionally that I’m “fighting” Parkinson’s admirably. Here’s a secret—I’m not fighting Parkinson’s at all. It is what it is, and it’s not going away. What’s to fight? Besides, I refuse to take an adversarial stance with my own body or kick and fuss and dig in my heels all the way down the path that is mine. No, I prefer to walk, to dance, to hike, to skip, to crawl if it comes to that, as best I can on this remarkable journey. My body may feel lethargic, but I want my soul to stay fully awake. If I feel today like I’m ninety-two years old, I can deal with that. Forty-seven will feel so young and sprightly when the Mirapex haze wears off next week. In the meantime, if you find me snoozing in odd places feel free to snap me out of it. And if you ever hear me complain, remind me to open my eyes. Wake me up. Always wake me up.


  1. You are so beautiful. I admire you very much. Thank you for being a great example to me - someone else with a life-long "problem" that brings new discoveries around every corner.

  2. Lady, you make me cry. Thank you for the inspiration.

  3. Ditto. Thanks also for sharing with us your talented craft of list making. That one was indeed inspiring.

  4. I hope to be like you. Thank you for your strength and example. Love ya!

  5. Ah Jerie,

    On a night when I couldn't sleep, your words felt nourishing and beautiful.

  6. I feel that way too about disease.

    Not fighting. It's been like a dirty secret that I hide from doctors and therapists. Yes, I work hard and do my best. But it's much more rewarding and peaceful to not take it personally.

    Then we can dance again with abandon because we aren't holding on to anger so tightly.

    So beautiful Jerie.

    I'm happy I caught you on Facebook.

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