Jay Curtis’ ALS Journey Through Poetry

Today, we welcome guest blogger Jay Curtis who shares his ALS experiences through poetry.

By: Jay Curtis, New York

I have been a proud member of the Writers Guild of America for decades. I spent most of my professional career as a promo writer/producer/director at CBS Television City in Hollywood. I also write poetry as a creative outlet. I write right-handed. In 2015, I was having trouble with my fingers curling up and with weakness in my right hand and arm. On December 1, 2015, I was diagnosed with ALS.

I decided to document my ALS journey in the series of poems and those poems are now a book titled, In and Out Dreaming, recently published by Lexingford Publishing LLC. It is available at amazon.com, barnesannoble.com and directly from the publisher.

I began the book a couple of days after learning that my right hand problems were not something easily fixable. The first poem in the book is about receiving my ALS diagnosis. I wrote the rest of the poems in the months that followed. The poems are not only about the symptoms of the nerve disease, but also about the psychological impact and the roller coaster feelings that come with them.

These poems are personal, but I believe they express something universal in revealing what people with a deadly disease live with every day. My hope is that this book will be helpful to people with ALS, their family and friends and to medical practitioners. For practitioners, it may provide insights into the effects that the disease has from the patient side of both the diagnosis and the prognosis.

A portion of the sales of my book, In and Out Dreaming, will be donated to The ALS Association.

These kind words come from Barbara Newhouse, President and CEO, The ALS Association: “Jay’s poetry is rich and deep and beautiful. He paints a vivid picture of what it’s like to live with ALS and proves that the most challenging of circumstances can be sources of great insight and greater inspiration.”

Here is one of my poems from the book:

Life in Reverse

Dreams bring on the freedom to dance.

Waking brings increasing limitations.

Progressing de-nerving has me devolving,

in reverse gear undoing growing pains.

Sometimes I laugh at my ineptitude

unable to accomplish the simple things

zipping, buttoning, gripping, holding.

There is hope in finding new habits

and  joy in remembering the old ones.

My grandfather taught me to sign my name.

My mother taught me to tie my shoes.

My father taught me to throw a knuckle ball.

Skills gone like a seeded lawn under spring snow.

I imagine traveling back to innocence,

ignoring the strangling bracelets of thorns.

Even now, I find new roses blooming,

brightening my once traveled return path.

As precious as muscle memory may be

other learning is not ruled by nerve fibers.

I will spark the remaining fuel of the fire within

using any communication method possible

to file reports from the battlefield front.

No matter how much my shell deteriorates

both wide-eyed innocence and experience

will surround me like night bloom.

Look for me in your rearview mirror

as I live the rest of my life in reverse.

The book is available on amazon.com.

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