The month of April was both National Poetry Month and Parkinson’s Awareness Month – a fact of particular significance in our household since I happened to be married to a poet who has Parkinson’s. Hal has been a poet for most of his adult life, with five books to his name and one laureateship (as the former Poet Laureate of Queens, NY). Being a poet is Hal’s identity and his love. The Parkinson’s has become a not so welcome part of his life, though, one that he struggles with every day, every moment. Hal has had Parkinson’s for almost twenty years now, he struggles to walk, swallow and speak. But he doesn’t let the illness stop the making of poetry; it’s too important. In fact, the Parkinson’s motivates him to work even harder, writing against the movement of time, not knowing how much longer he will be able to do it. He writes even though his handwriting has become indiscernibly small, “micrographia” (the smallest letters you’ve ever seen), and even though he loses steam.
Since having Parkinson’s, Hal has written three books, travelled to Israel, Finland and Iceland to perform. The American Embassy gave a party for him in Reykjavik, where two of his books were published, and where he performed on National Icelandic television right before the “adopt a cat” show.
Hal writes about Parkinson’s now, too, poems that he’s performed all over the East Coast. We’ve taken to the road, so he can read his Parkinson’s poems to support groups, hospitals, and conferences. The Parkinson’s poems encourage others struggling with this illness, help them to find some humor in the unfortunate circumstances they find themselves in.
Being married to Hal, I’ve seen the power of poetry, or the written word, to transform. Through poetry, he has been able to forge a way through the illness and make art from the experience. To me, this is what writing is all about, going beyond the constraints of our lives, or the pain and limitations of a disease, and sharing one’s experiences with the world. In doing so, he encourages, inspires and lifts up. Keeping on with the writing of poetry is a way of saying “so there” to the Parkinson’s – I’m still at it.
(Previously published in The Philadelphia Inquirer on April 26, 2015)
A Parkinson’s poem by Hal, included in the Inquirer piece:
Learning New Words
My Parkinson’s medicine makes
my arms shake. The medical
term is dyskinesia. That’s one of the benefits of the disease-
you learn new words. You
also learn new meanings for
old words. When I say my
windows are wide open,
I’m not referring to the computer
or those in a house. It means
my medication is working.
A half closed window means
the medicine is wearing down.
A closed window means everything
I do will now become a struggle.
I just pray the window won’t get stuck.
(published in the Bellevue Literary Review, Fall 2008 issue, the Department of Medicine at NYU Langone Medical Center)