One of the most addicting, and inspiring, memoirs I’ve ever read.
In 2008, Simon Fitzmaurice was diagnosed with ALS, or Lou Gehrig’s disease. He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive.
Length: 177 Pages
Release Date: August 1, 2017 (U.S. Edition. It is already available in other locations.)
Publisher: Houghton Mifflin Harcourt
About the Author
SIMON FITZMAURICE is an award-winning writer and film director. His debut memoir, It’s Not Yet Dark, was a #1 bestseller upon its release Ireland, has been nominated for the Bord Gáis Book of the Year Award, and was ranked #2 in Liveline’s Writer’s Book of the Year.
His films have screened at film festivals all over the world and won prizes at home and abroad, including Best Short Film at the Cork Film Festival and the Belfast Film Festival (twice); the Grand Jury Prize at the Opalcine Film Festival, Paris; the Jimmy Stewart Memorial Award at the Heartland Film Festival; and Jury Award at the Palm Springs International Film Festival. His short film The Sound of People was selected to screen at the prestigious Sundance Film Festival. Simon holds honors master’s degrees in both Anglo-Irish literature and drama, and film theory and production. His short fiction has been short-listed for the Hennessy Literary Award, and his poetry has appeared in the quarterly publication West 47. His first feature film, My Name Is Emily, was just released in both the UK and the United States. He lives in Greystones with his wife, Ruth; their five children, Jack, Raife, Arden, Sadie, and Hunter; and their basset hound, Pappy.
There are many books out there that are inspiring. There are many books out there written by those who have overcome terrible circumstances. But I have never read a book like this one. Some of that may be the style it is written in. The sentences are short, as are the chapters. Ever word is on purpose, getting straight to the heart and the emotion of it. Simon FitzMaurice may have written it this way because, unlike most people who write books by hand (writing or typing), It’s Not Yet Dark was written completely by an eye-gaze computer (As was his recently released feature film, My Name is Emily, which he wrote and directed). He is unable to speak, move, or communicate in any other form than using his eye gaze computer. And yet he continues to write, direct movies, and live his life as completely as possible. I can’t even image the dedication that takes.
Or he could have written it this way because that’s his style. Either way, it was powerful.
But it is more than just the style of writing that makes this book good. It is who Simon is that makes the book so compelling. It is what he has to share. He talks about his successes as an award-winning filmmaker, but that is not what defines him. His struggles, his relationships, and his determination to lead a fulfilling life in spite of what has been taken from him has shown who he is. I highly recommend reading It’s Not Yet Dark. I certainly left inspired and motivated to not let my perceived obstacles stand in the way of accomplishing what I truly desire. If Simon didn’t, I certainly don’t have an excuse.
5 out of 5 Stars.
*There is some language and vulgarity, but it is few and far between.*
I’m in the doctor’s office and he tells me I have ALS. Light leaves the room. And air. And sound. And time. I sit on the chair opposite but I am far away. Deep inside. Looking up through the tunnel of myself, as he speaks those words. “Three to four years to live.” I don’t hear him. Is this my life? Is he talking about me? I leave the room, the tunnel all around me, and stand before my wife[, Ruth,] in the waiting room. The color leaves her face. Her father is beside her. They come into the room and he tells them the same thing. I don’t hear him. Ruth starts to cry. Within ten minutes we are out on the street. Not knowing what to do, we do what we planned to do before. We go to lunch. Ruth’s dad will meet us after. We walk through the streets like the survivors of some vast impact. Pale, powdered ghosts. We reach the restaurant. Dunne and Crescenzi on South Frederick Street. Our favorite. I stand into a doorway outside and call my parents. It is the worst phone call of my life. I tell them everything, fast, hearing the panic in my voice. Later, I’ll thank them for coming when they arrive at our house, and they’ll look at me as if I’m insane and I’ll become aware, for the first time, that nothing is the same. We enter the restaurant. Sit down like everyone else. We sit there, not knowing what to do, what to say. The waiter comes over and starts to speak to me. Ruth starts to cry. The place is under water and I can’t hear what he’s saying. Ruth is pregnant with our third child.
We are orphans of the universe. Our species is defined by asking questions, out into the dark, without anyone to guide us except one another.
Time is a trick. From an outside vantage point we live a certain length of time, one that we measure in minutes, hours and seconds, birthdays and anniversaries. But we don’t live at a vantage point to ourselves: we are immersed. We live in fits and starts and jumps, like dreams. And the lives we inhabit are measured in moments, irrespective of time. How we live is strange and uncertain and not written on any map.
In a movie, when a doctor tells a patient they have a certain time left to live, it sparks a voyage of discovery, a quest for authenticity and redemption. In Joe Versus the Volcano, one of my favorites, Joe Banks, when told he has a “brain cloud,” goes outside and hugs a large dog, then goes on to do what he’s wanted to be doing for years: he lives his life.
I think of him often in those first days after. How that moment I had always laughed at had become my life. What now? What do I do? And it comes to me very quickly. I suddenly know what is different between me and Joe Banks, between all the stories and my life. I am happy. I am exactly
where I want to be, with exactly who I want to be with. It’s quite a realization to discover beyond doubt that you’re happy. And death had brought me there.
Death. On my shoulder. In my head. In the garden. At the door of my office. In every glance with my wife. My new companion: the end of my life.
We are living in North Cottage[, Ireland], with our two little boys, Jack and Raife. We moved here so we could afford to live the life we wanted to live. I was working on my films, Ruth was writing her first novel and the boys had a garden ten times the size of the one at our previous house. We had a plan. And it was working. We were happy.
But that was before. This is after. Never before had I felt that split, but now a fault line has opened between our past and present, and there is no going back. Death, which before had lived on some distant horizon, is now in our living room. We are lost, within the familiar surroundings of our lives. Ruth and I cry a lot, at night, in bed.
Human time is not measured by clocks and watches. Time slows down, time speeds up and the mystery of how we live is ever present, despite our will for it to be otherwise. Our lives are not the legacy we leave behind, or the value of the work we do. Our lives happened inbetween the deeds and ideas that define us. Each of us feels it, the mystery, the strangeness of life on earth. Of life and death. We feel it when we travel, we feel it when we stay at home. We feel it when a loved one dies or when a loved one is born. I’m sure we all crave more certainty than we have but that is not human life. That is the ticking of the clock.
When you are told you will die within a certain period, time slows down. Life becomes dominated by the last time. Is this the last time I will read a book to one of my boys? If not the last, how many more? How many? Everything is heightened. I stand outside in the darkness and watch my son playing in the window of the cottage. I stand until the cold is in my bones and wonder, Is this the last time that I’ll stand? I’m in my life and outside it, in the moment and conscious of the significance of every moment.
It’s lucky. In this heightened state, experience is burned into my memory. I’m running after Raife and I’m thinking, Is this the last time I’ll be running? So I speed up. I’m running with a limp, and so running full tilt becomes a series of long hops and strides. But I’m running, across the grass, after my son, who is laughing uncontrollably, in the half-fright ecstasy of pursuit. And I’m remembering it. Fear of the last time is recording every second. Which is lucky, because it is the last time. And when you lose something central in your life it’s important to have a memory of it, so you
don’t feel insane, so the pain you feel has a corresponding shape, something that says definitively, “That is real.” Then, happy or sad about it, I have that for ever.
It’s Not Yet Dark is available both digitally and in hardback. If you live in the U.S, it is currently available for pre-order. Click HERE for more reviews and/or to purchase it today!