By Amy Carlson:
It is sunrise, and I am in Kauai. The roosters are in full crow; my left leg bounces in a time only it knows, and I am writing again. A trick of the meds? I don’t know, but my fingers are allowed to type even if the laptop is bouncing crazily.
I dreamt of work again last night. This is becoming a regular thing now. People I used to work with appear in my dreams, and I am introducing them, and their names come slow. They always wait in the dream, politely, for their name to come to me; and the name always comes, but not before their face slowly but surely shows their pity for me. In the dream, I witness their conversations at the dinner table later with their wives: “She looks good. She really does. But it was so awful, she had trouble remembering my name!”
And so it goes. I could argue with that dream, and I do every morning. There is so much to this journey that is positive, enlightening, and beautiful. And yet the dreams persist, there is an urgency in their constant appearance—they are the last dream of the night. They usher in the day.
It is sunrise, and I am in Kauai. The roosters still crow, and the sky has gone to full light. You can’t capture this sort of beauty in any sort of medium—as artists we fall well short of God. I hear the neighborhood around me rumble to life—cars drive by, trucks shift gears, engines start—there are no words, just mechanical sounds that tell us that people are at work. Whether they see the sunrise or not, it is there and I have noticed, marked its existence and filed it into my imperfect memory.
My art lately is filled with holes, gaps, repeats, and refrains. It echoes my experience of the world. Imperfect, ephemeral, shifting, pained, interrupted, as if a strobe light is on a constant slow flicker, and I am only alive when the light is on. But like all metaphors, this is a flawed description and only captures a hint of the experience.
It is sunrise, and I am in Kauai. I am living, whether I am on or off, as we Parkies like to say. On and off are parlance for meds working and meds not working—again like all metaphors—it is an imperfect description, but it does the job well enough to stick around.
Some people see the metaphor like this:
But I have a mind shaped by engineering, and so my visual looks more like this:
Both of these images imply that I can reach out and control the situation. That would be misleading; I do have the ability to affect the situation, but control . . . not quite.
Each Parkie has their own definition of off and on, and those meanings change over time as we adjust to the slowly shifting sands under our feet.
The waves of the Parkinson’s ocean come in and erode our Terra Firma relentlessly. Our body is not our body.
Recently, I met a beautiful artist named Wayne Gilbert, he is a poet and he wrote this poem that when I heard him perform it, I felt he had written it just for me
I’m imagining what I most desire:
a refuge from this body within this body,
the quiet inner sanctum where this body’s howling does not reverberate,
no out-of-body dissociative disorientation.
I long for:
the deepest possible immersive immanence here somewhere inside this body,
inclusive of this body, larger, which encompasses all this body, its
inefficiencies insufficiencies failures dys/malfunctions incorporates this body,
a reversal of physicality that contains it,
a place where suffering and pain are welcome as the desert welcomes rare delicate
an emptiness that fills with gentle mercy.
I want to be a body inside a body again, surrounded, loved because
I am so imperfect, so restless, uncomfortable.
I’m no mystic yet not dogmatic doctrinaire about this troubled life-in-a-body.
I'm not afraid to live here, a this-among-things substantial.
My body is not "spiritual" in any out-this-world sense.
Soul is a kind of music to me.
I like being a body,
but it’s the hardest goddamn project I’ve ever undertaken.
Quite often it hurts real bad at least a little all the time.
I want real sanctuary;
not some metaphysical asylum but an actual physical site.
When I was a boy, always a stranger moving town to town,
I thought it was just called home, and I dreamed of arriving.
I still do—more than ever—just not outside myself,
perhaps nearer my bones.
— Wayne Gilbert