It's not yet dark

Simon Fitzmaurice

Book - 2017

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.

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Subjects
Genres
Autobiographies
Published
Boston : Houghton Mifflin Harcourt 2017.
Language
English
Main Author
Simon Fitzmaurice (author)
Edition
First U.S. edition
Physical Description
165 pages ; 20 cm
ISBN
9781328916716
Contents unavailable.
Review by Publisher's Weekly Review

In 2008, shortly after his short film The Sound of People was chosen to be shown at the Sundance Film Festival, Irish director Fitzmaurice was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease and, at age 33, was told he had "three or four years to live." This powerful and moving memoir captures his struggles with ALS, "the seesaw balance of strength and weakness" that he experienced daily, the strain ALS put on his wife and children, and his eventually successful efforts to convince the hospital to allow him to use a ventilator to remain alive. Fitzmaurice is unsparing in his description of his condition: "ALS does not let you rest. It does not let you adapt. It does not give you space. ALS takes and keeps taking." The ventilator added years to his life, and although he cannot move his arms or legs and can't breathe "without a machine helping me day and night," he learned to use an eye-gaze computer to communicate and made a new feature film (My Name Is Emily, which premiered at Sundance in 2017). The heart of this inspirational book is Fitzmaurice's perseverance ("They gave me my life and I wouldn't give it up") and his unflagging belief "in the power to take what life throws at you and slowly to come back, to take all you have and not be crushed by sadness and loss." (Aug.) © Copyright PWxyz, LLC. All rights reserved.

(c) Copyright PWxyz, LLC. All rights reserved
Review by Kirkus Book Review

Affecting memoir by Irish filmmaker/writer Fitzmaurice on living under the death sentence of amyotrophic lateral sclerosis, or Lou Gehrig's disease."I frighten you. I am a totem of fear. Sickness, madness, death. I am a touchstone to be avoided." Ireland's No. 1 bestseller on its 2014 release, the author's unblinking look at his life and the devastating illness that overwhelmed him charts a familiar arc of surprise and sorrow, resolution and helplessness. The narrative moves swiftly. We're just a few pages in when Fitzmaurice, having just learned that one of his films will be screened at Sundance, notices that his foot is flopping. Having injured it while climbing in the Himalayas the year before, he went to buy a pair of running shoes for support only to see the widening eyes of the shoe salesman become "a twinge in my stomach." Deeply in love with his wife and with a small army of children in the house and on the way ("my willy works. It's that simple"), he was given only three or four years to live. The disease notwithstanding, he protests, "I am about the healthiest person with ALS you are ever likely to meet." That the disease follows its own logic did not dissuade him from deciding to live with a ventilator and with technology that allows him to communicate. Though the writing is occasionally facile"we are orphans of the universe. Our species is defined by asking questions, out into the dark, without anyone to guide us except each other"Fitzmaurice communicates well, making his own case and advocating for the right of the afflicted to make their own choices in how they will live and die. A fine and heartfelt memoir from an author hopeful in his determination to endure against the odds: "What remains is desire." Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

The brave   I am a stranger. A different breed. I move among you but am so different that to pretend I am the same only causes me pain. And yet I am the same, in as many ways as I am different. I am a stranger. I observe your meaning on television, through song and writing. I was once like you. But I often feel distant from you. My meaning has faces, names. Totems. The words we utter. Every breath of us is meaning. {{ Everyone notices but no one sees. On the streets, in the crowds, no one sees. I was once invisible. I moved among you, invisible in my disguise. Now I am difference made manifest. I cannot hide. I move with a force field that makes you avert your eyes. Only children see me. You gather them together when I draw near but they do not look away. You cross the street from me but your children do not look away. They are still looking for the definition of man. I frighten you. I am a totem of fear. Sickness, madness, death. I am a touchstone to be avoided. But not by all. The brave approach. Women. Children. Some rare men. And I am shaken awake. Those I count as friends are the brave.     Holding my breath   I'm driving through the English countryside. A narrow road rising up to a tall oak tree. It could be Ireland. The call comes just before I reach the tree. It's my producer and she is excited. She has just received a call from the Sundance Film Festival, saying they would like to screen our film. I feel something shift inside me. She talks quickly, then gets off. I pass the tree. She calls back. Says she got another call and that they are really excited to screen our film. We exchange words of jubilation I can't remember and say goodbye. I'm driving down the country road and I am changed. {{ I have been to many other festivals. I don't know why this one means so much to me. Maybe it's because I grew up within my father's world of cinema, where Robert Redford was a legend. The Natural was one of our favourite films. I don't know. But I've often wondered if that was the moment motor neurone disease, or amyotrophic lateral sclerosis (ALS), began in me. That I had been holding my breath for years. And suddenly let go. And that something gave in that moment. Something gave. {{ My foot drops the following month. I'm walking through Dublin. From Rialto to Stephen's Green. I stayed in a friend's house the night before. Slept on the floor. Now I hear a slapping sound. My foot on the pavement. It's a strange thing, like my foot has gone to sleep and is limp. It passes. I immediately relate it to the shoes I'm wearing, brown and red funky things with no support whatsoever. I wonder if I damaged my foot on the mountain climb last year. So I go into the outdoors shop off Grafton Street, upstairs to the footwear department, and start trying on a pair of running shoes, determined to give my foot support. I ask the salesman for assistance. This is a mountaineering shop so I feel confident he will understand and I start to explain how I'd climbed a Himalayan mountain last year but I'd been wearing these awful shoes with no support and now my foot has started to flop in them and had he ever seen something like that before? He looks at me. My innocence meets his concern. No, I've never seen anything like that before, he says. The look in his eyes becomes a twinge in my stomach. My first diagnosis is by a shoe salesman.   Baggot Street Bridge I'm sitting on an uncomfortable stool in the dingy basement apartment of a friend from college when a girl walks into the room. She is tall, slender and quite easily the most beautiful girl I have ever seen. She is crossing the back of the room with a friend of mine. My first thought is simply, How the hell did he get her? She is a girl from Ardee, County Louth. She is out of my league. Her name is Ruth. {{  I spent my whole life looking for Ruth. {{ Years after first seeing her, I'm walking down O'Connell Street with my parents, after coming out of the Savoy cinema, and I pass Ruth at a bus stop outside Clery's department store. I stop my parents and run back to her. We talk but behind our words, in our eyes meeting, something is there. I ask for her number and she opens her bag. Her hair is short and she looks stunning in a simple navy winter coat. I'm cheeky. I see her pay slip in her bag and reach in, pretending to have a look. Ruth gives me her number, we say goodbye and I catch up with my parents. It's Thursday. I don't call. It's too important. The following Monday, I'm walking up from Lansdowne station into work. Coming back from working in Ukraine, I had got a job no one else wanted. It was an accountancy practice with one accountant. That was the staff. Me and him. My job was to sit in a little back office and answer the phone. It never rang. Ever. I read all day. It was so quiet that the recruitment agency said no one had lasted more than a week in the place before me. I was getting through a book every three days. Paid to read. I had been there for months. I'm standing at Baggot Street Bridge, waiting to cross in a crowd of commuters. It's pre-coffee early and I'm half asleep. The girl in front of me is wearing headphones. Her coat is navy. I realise and slowly reach out to touch her shoulder. Ruth turns around. She is half asleep and it takes her a moment to recognise me. She goes red. I go red. She fumbles off her headphones and the crowd crosses the bridge without us. It takes a few moments of conversation to figure out that she works just down the road from me and has done for months. That we both walk the same way to work, at the same time, and have done for months. But that we hadn't met until four days after we bumped into each other for the first time in years. Wonderfully weird. Embarrassed beyond reason, we hurry off. {{ We meet for lunch in Searson's pub on Baggot Street. Two large bowls of pasta sit between us. But my stomach is constricted. So is Ruth's. We cannot eat. It is embarrassing. It is love. {{ At the weekend we go to the cinema with some friends. I sit beside Ruth. The air is magnetically charged with my desire to touch her. {{ We kiss for the first time a week after, in a basement nightclub off Wicklow Street, in the shadow of a doorway.   Excerpted from It's Not yet Dark: A Memoir by Simon Fitzmaurice All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.