IT’S NOT YET DARK

Nonfiction

My heart is alive

IT’S NOT YET DARK

By Simon Fitzmaurice

165 pp. Hachette Ireland

Reviewed by Sue Ellis

If this were a memoir only about Lou Gehrig’s disease, you might wince at the thought of the predictable outcome. But it’s not that, which is to say, It’s Not Yet Dark puts succumbing to the disease where it belongs, at the bottom of Simon Fitzmaurice’s list of considerations.

Before reading this book, you might have assumed that it is impossible to have any quality of life while hooked up to a ventilator, but Fitzmaurice eloquently dispenses with that line of thinking, explaining how he chooses to live fully despite his handicap and the attendant gadgetry that makes life possible.

His story begins by describing a pre-Lou Gehrig’s moment of success in his chosen field. Fitmaurice is an award-winning writer and film director, holding degrees in both Anglo-Irish literature and drama, and in film theory and production. The moment of success was a call from the Sundance Film Festival saying they would like to screen his film, The Sound of People. 

From there time spans and events crisscross a bit, but make no mistake, his life’s story up to now is not disjointed or dull. His prose is often succinct but achingly beautiful as he presents verbal snapshots of his life before and after the onset of his disease. It’s as if he’s arranging his written work into the film sequences that are his art and craft. It soon becomes obvious that his method works as well on the written page. Here’s an excerpt, a poetic observation of the state of affairs under which he lives:

I do not eat or drink or walk or talk the way you do. I don’t breathe without a machine helping me day and night. I cannot move my arms or legs. And yet. I’m still a man.  I’ve lost so much. And yet. I’m still here.

I feel everything. The slightest feather touch anywhere on my body. And my heart is alive. To meaning. To value. To love. Which is all it’s ever been about. 

Eye-gaze technology allows him to communicate and to write. His first feature film, My Name Is Emily, was released in the U.S. in February of this year. A documentary about Fitzmaurice, also titled It’s Not Yet Dark, premiered at Sundance January 2017 and will be released on Netflix in December. 

It’s Not Yet Dark is an inspirational story of survival and a humbling homage to family and to love. Fitzmaurice, husband and father of five, lives broadly and deeply despite the ALS diagnosis he received in 2008. He was given four years to live at that time. I’d recommend this book to anyone, but particularly those who face crippling medical challenges.