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It's Not Yet Dark
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.In It's Not Yet Dark, the young filmmaker, husband, and father of five small children, draws us deeply into his inner world. Told in simply expressed and beautifully stark prose, it is an astonishing journey into a life that, though brutally compromised, is lived more fully than most, revealing at its core the potent power love has to carry us through the days.Written using an eye-gaze computer, It's Not Yet Dark is an unforgettable book about relationships and family, about what connects and separates us as people, and, ultimately, about what it means to be alive.
4 pages, Audio CD
First published June 5, 2014
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August 29, 2017
3.25 Stars* (rounded down)
“It’s Not Yet Dark” is a memoir written by Simon Fitzmaurice, an Irish Film Maker, who was diagnosed with MND (Motor Neuron Disease a/k/a ALS (Amyotrophic Lateral Sclerosis) a/k/a Lou Gehrigs’ Disease) at the age of 34. At the time of diagnosis, he was given 4 years to live. Yet he had hope. And he believed in the power of love.
Mr. Fitzmaurice’s memoir advocates for a person with this disease to make the choices for themselves; he chose to live. Unfortunately, in each country, the choices a person can make are different. This I know.
“It’s Not Yet Dark” is a memoir that tells you what happened to Simon Fitzmaurice, it doesn’t show you, nor does it evoke emotion from its reader, in my opinion. I admit that I held off reading this novel for months as I was afraid of the reaction that I would have. However, the writing felt somewhat stilted, cold and unemotional to me and I was expecting the exact opposite and I thought reading it would destroy me.
Sadly, I have lost two relatives to MND/ALS, which is unspeakable: my My Uncle, Edward Lightowlers, who passed away in July of 1998 and my cousin, Les Halpin who passed away in September of 2013. I miss Les very much.
While, I didn't feel the emotions of Mr. Fitzmaurice's plight in this memoir, that in no way diminishes it.
Thank you to NetGalley and Simon Fitzmaurice for an ARC of this novel in exchange for an honest review.
Published on NetGalley, Goodreads and Amazon on 8.13.17.
“It’s Not Yet Dark” is a memoir written by Simon Fitzmaurice, an Irish Film Maker, who was diagnosed with MND (Motor Neuron Disease a/k/a ALS (Amyotrophic Lateral Sclerosis) a/k/a Lou Gehrigs’ Disease) at the age of 34. At the time of diagnosis, he was given 4 years to live. Yet he had hope. And he believed in the power of love.
“For me, it is not about how long you live, but about how you live.”
“I am not a tragedy. I neither want nor need pity. I am full of hope. The word hope and ALS do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That’s hope.”
Mr. Fitzmaurice’s memoir advocates for a person with this disease to make the choices for themselves; he chose to live. Unfortunately, in each country, the choices a person can make are different. This I know.
“It’s Not Yet Dark” is a memoir that tells you what happened to Simon Fitzmaurice, it doesn’t show you, nor does it evoke emotion from its reader, in my opinion. I admit that I held off reading this novel for months as I was afraid of the reaction that I would have. However, the writing felt somewhat stilted, cold and unemotional to me and I was expecting the exact opposite and I thought reading it would destroy me.
Sadly, I have lost two relatives to MND/ALS, which is unspeakable: my My Uncle, Edward Lightowlers, who passed away in July of 1998 and my cousin, Les Halpin who passed away in September of 2013. I miss Les very much.
While, I didn't feel the emotions of Mr. Fitzmaurice's plight in this memoir, that in no way diminishes it.
Thank you to NetGalley and Simon Fitzmaurice for an ARC of this novel in exchange for an honest review.
Published on NetGalley, Goodreads and Amazon on 8.13.17.
August 9, 2017
"It's not important you know everything about ALS, about the specifics of the disease, about what it's like to have it. It's only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country."
Simon Fitzmaurice is an Irish film maker who was diagnosed with ALS a few years ago. The country he refers to in this quote is his disease. He has written this sparse short memoir using some of the only muscle control he has left -- using technology that allows him to write with eye movements. He has an extraordinary will to get the most out of the life that remains, and so a book that should be horribly depressing ends up feeling powerfully uplifting. Tough topic but well worth reading. Thanks to Netgalley and the publisher for an opportunity to read an advance copy.
Simon Fitzmaurice is an Irish film maker who was diagnosed with ALS a few years ago. The country he refers to in this quote is his disease. He has written this sparse short memoir using some of the only muscle control he has left -- using technology that allows him to write with eye movements. He has an extraordinary will to get the most out of the life that remains, and so a book that should be horribly depressing ends up feeling powerfully uplifting. Tough topic but well worth reading. Thanks to Netgalley and the publisher for an opportunity to read an advance copy.
May 21, 2018
It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country.
3.5 Stars. One month after his film was accepted into the Sundance Film Festival, Irish filmmaker Simon Fitzmaurice's foot started going limp. The sensation passed, but his symptoms continued to escalate until they couldn't be ignored any longer. At only 34 years old, Simon was diagnosed with ALS (Lou Gehrig’s disease/a form of MND). Over the next two years, "the seesaw balance of strength and weakness” quickly began tipping more towards the side of weakness. When the disease took away his ability to breathe on his own, Simon's doctors said it was the end. They began to counsel him on his end-of-life options, but Simon knew it wasn't his time to go. Surrounded by the love of his family and friends, there was so much to live for.
I want to live. Is that wrong? What gives a life meaning? What constitutes a meaningful life? What gives one life more value than another? Surely only the individual can hope to grasp the meaning of his or her life. If not asked if they want the choice to live, it negates that meaning.
ALS is an unpredictable disease that progressively destroys the nerve cells that control voluntary muscle movement. While the disease takes so much away from a person, there's still an opportunity to lead a full life. Simon advocates for patients to be made aware of all their options and allowed to decide their own fate. There are many technologies that help improve the quality of life of ALS patients: "The disease takes your ability to speak. But it need not take your voice." Simon is still able to control his eye muscles, so he wrote the entire book using an eye-gaze computer.
It's very much a filmmaker's book! This short, evocative memoir is composed of fragments--the memorable scenes that constitute a life and poetic bursts. He doesn't always take a straightforward approach to telling his story. Just when it seems the story is ending, he darts back to his coming-of-age years ("What is man?") and then returns to the present ("I'm still man"). I actually didn't appreciate this section until I went back over it later: "How much spans the divide between Before and After? What is Man? How much can be taken away and what is left?"
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 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.
It's Not Yet Dark is a beautiful testament to the love of family and life. I read this book because I was curious about the medical side of things, but my favorite parts ended up being the Fitzmaurice's love story and his descriptions of the precious moments he spent with his children. Sometimes the quietest moments are the most powerful. Simon Fitzmaurice is an example of the full existence that can be led after all seems lost. When he was diagnosed, he was given a prognosis of three to four years. Defying the odds, he is still watching his children grow up and producing films nine years later. He doesn't deny the daily struggles, both emotional and physical, but the sacrifice is worth it to extract all he can out of this fleeting, fragile life. It may not be the life he would have imagined for himself, but it's still a life.
The emotional trailer for the It's Not Yet Dark documentary gives a good sense of the tone of this book. Its release date is August 4, 2017. His wife Ruth's memoir I Found My Tribe coming out in Spring 2018. If you like this book, you might also be interested in The Diving Bell and the Butterfly by Jean-Dominique Bauby.
Update: Simon Fitzmaurice passed away on October 26, 2017.
LINKS
• It's not yet dark for filmmaker Simon Fitzmaurice - Simon's story
• How Ruth Fitzmaurice found her tribe in Ladies Cove, Greystones
• My Name is Emily trailer- A film made after his diagnosis. It stars Evanna Lynch, the actress who played Luna Lovegood in the Harry Potter series.
• Breathing and ALS - This handout from the ALS Association Greater Philadelphia Chapter outlines some of the benefits and problems with ventilation for ALS patients.
• Wild and Precious Life by Deborah Ziegler - A few months ago, I read a book about a young woman who made a very different choice when confronted with a terminal diagnosis. Brittany had a very different outlook on life, but there's a very similar issue at the heart of both books: dominion over your own body.
• I'm currently reading Admissions by Henry Marsh, and this quote about the ease of assuming your future state of mind when you're well stuck with me: "When you are feeling fit and well, it is relatively easy to entertain the fantasy of dying with dignity by taking your own life, as death is still remote. If I don’t die suddenly, from a stroke or a heart attack, or from being knocked off my bicycle, I cannot predict what I will feel when I know that my life is coming to an end – an end which might well be distressing and degrading. As a doctor, I cannot have any illusions. But it wouldn’t entirely surprise me if I started to cling desperately to what little life I had left."
I received this book for free from Netgalley and Houghton Mifflin Harcourt. This does not affect my opinion of the book or the content of my review. It was originally published in 2014. This edition will be available on August 1, 2017.
December 2, 2015
This was an extraordinary book for me to read. Written by a successful film maker - and a marvellous writer - it was also written by someone almost completely immobilized by motor neurone disease. He wrote the book using a computer that could respond to eye movements.
I am someone who hates having any sort of illness, pain or discomfort. The moment my temperature rises above 97.5°F, I am ready to bundle myself off to Dignitas.... What a shock therefore to read this book, and immerse myself in the soaring joy, celebration of love, wife and family, adoration of film, and pleasure in the beauty of the world around him, that Simon Fitzmaurice experiences. He loves life. He wants to wring out the very last drop of it that he possibly can, and he fights to make this possible.
We learn something of the huge challenges and trials of having advanced motor neurone disease, but mostly Fitzmaurice's imagination leaps, pirouettes and spins over the intense joys of life that he has experienced....and that he is still getting now, mostly via is wife and children, friends and family. Of course he has great fears concerning his illness, but this is always outweighed by his love of life.
One of the most incredible attributes of books generally is that they can enable you to get inside the minds of people who have perspectives completely different to your own.....and this book did this for me in spadefuls. Not only that, but it was beautifully written. A truly marvellous book.
I am someone who hates having any sort of illness, pain or discomfort. The moment my temperature rises above 97.5°F, I am ready to bundle myself off to Dignitas.... What a shock therefore to read this book, and immerse myself in the soaring joy, celebration of love, wife and family, adoration of film, and pleasure in the beauty of the world around him, that Simon Fitzmaurice experiences. He loves life. He wants to wring out the very last drop of it that he possibly can, and he fights to make this possible.
We learn something of the huge challenges and trials of having advanced motor neurone disease, but mostly Fitzmaurice's imagination leaps, pirouettes and spins over the intense joys of life that he has experienced....and that he is still getting now, mostly via is wife and children, friends and family. Of course he has great fears concerning his illness, but this is always outweighed by his love of life.
One of the most incredible attributes of books generally is that they can enable you to get inside the minds of people who have perspectives completely different to your own.....and this book did this for me in spadefuls. Not only that, but it was beautifully written. A truly marvellous book.
June 27, 2015
This book was a punch in the stomach and a punch in the heart all at once. Devastating, heartbreaking, yet powerful and inspiring.
April 24, 2018
"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 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"
One of my biggest 2018 reading goals was to read more of different genres, and I am happy to say that I've been doing great with it (at least I think so). This time I ventured out to read some non-fiction, particularly a memoir, which I honestly never read. But I am so happy that I did.
I am a hypochondriac, so even reading this book made my scalp tingly with worry and self destructive thoughts. But I am pushing my comfort zone this year, and It's not yet dark was totally worth it.
"It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country."
It's not yet dark reads like a fiction. Maybe it's the first person narrative. Maybe it's the short, to the gut sentences. Maybe it's just the flow of it, but it does not feel at all as I thought I a memoir would feel. Which I think is absolutely perfect for people who don't read much non-fiction (like me).
ASL is a terrible disease, and it's so terrible because nobody understands why it happens. Nobody can tell that it might happen till it actually happens, and once it does - there is no cure for it. Person loses their mobility, bit by bit until they are completely motionless and powerless in their body. We ll know the saying "your body is your temple", but what do you do when "your body becomes your cage"?
What pulled me into this book was how honest Simon was - he was terrified and he wasn't hiding it. He wanted to live, he was angry, he was desperate and he was real. Death is scary and death was looming over him for many years, taking little bits of him each passing day.
Despite of it all Simon never gave up - he managed to keep dreaming and creating, all made possible with love and devotion of his family. Even when doctors came into his room saying "why would you choose to keep living like THIS?". Even when Simon couldn't move anything except his eyes - he was still there, he was a man who loved and was loved in return.
If you are looking into venturing out into non-fiction I'd definitely recommend It's not yet dark. It's a quick ,but very memorable and important read.
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One of my biggest 2018 reading goals was to read more of different genres, and I am happy to say that I've been doing great with it (at least I think so). This time I ventured out to read some non-fiction, particularly a memoir, which I honestly never read. But I am so happy that I did.
I am a hypochondriac, so even reading this book made my scalp tingly with worry and self destructive thoughts. But I am pushing my comfort zone this year, and It's not yet dark was totally worth it.
"It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country."
It's not yet dark reads like a fiction. Maybe it's the first person narrative. Maybe it's the short, to the gut sentences. Maybe it's just the flow of it, but it does not feel at all as I thought I a memoir would feel. Which I think is absolutely perfect for people who don't read much non-fiction (like me).
ASL is a terrible disease, and it's so terrible because nobody understands why it happens. Nobody can tell that it might happen till it actually happens, and once it does - there is no cure for it. Person loses their mobility, bit by bit until they are completely motionless and powerless in their body. We ll know the saying "your body is your temple", but what do you do when "your body becomes your cage"?
What pulled me into this book was how honest Simon was - he was terrified and he wasn't hiding it. He wanted to live, he was angry, he was desperate and he was real. Death is scary and death was looming over him for many years, taking little bits of him each passing day.
Despite of it all Simon never gave up - he managed to keep dreaming and creating, all made possible with love and devotion of his family. Even when doctors came into his room saying "why would you choose to keep living like THIS?". Even when Simon couldn't move anything except his eyes - he was still there, he was a man who loved and was loved in return.
If you are looking into venturing out into non-fiction I'd definitely recommend It's not yet dark. It's a quick ,but very memorable and important read.
My WEBSITE
My INSTAGRAM
My WORDPRESS BLOG
January 4, 2018
It's not Yet Dark is an inspiring memoir by an Irish writer and film director who, at age 34, was diagnosed with Motor Neuron Disease (MND/ALS/Lou Gehrig's) and given a prognosis of 4 years to live. Flash forward nine years to 2017, and Simon had written a memoir, directed a movie, been the subject of a documentary, and had three more children. These accomplishments are all the more commendable when you understand the extent to which the illness reduced his physical capacities. With no muscular control beyond this eyes, he breathed through a mechanical ventilator, moved with a specialty powered wheelchair, ate through his stomach, and communicated through an eye-gaze technology computer. He was reliant on 24hr nurse care, and the support of an amazingly dedicated and loving wife Ruth, and their 5 kids.
The book is short, to the point, and thoughtful. At 165 pages it's a quick and engaging read that's hard to put down. The stories he told of his life both before and after the illness evoke a powerful picture of all that was lost to him, and the courage needed to face the difficult questions of a meaningful life.
"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 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"
At the core of this story lies a fierce determination to live his life as fully as possible, and a deep appreciation for the gifts of life, love, and family."We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive."
If you're like me, and find yourself inspired to learn more after reading this book:
- A documentary chronicling his experience living with MND, titled 'It's Not Yet Dark' is available to watch on Netflix
- The movie he directed while living with MND, titled 'My Name is Emily' can be watched on Amazon Video
- Ruth Fitzmaurice, Simon's wife, released her own memoir in July 2017, expanding on the impact of Simon's illness on their lives together and their family. It's titled I Found My Tribe
- And, on a sad end note, if you do search the internet for more info, you will learn that Simon did finally succumb to the disease on 26th of October 2017, at age 43. :( He lived his life fully, and was an inspiration!
The book is short, to the point, and thoughtful. At 165 pages it's a quick and engaging read that's hard to put down. The stories he told of his life both before and after the illness evoke a powerful picture of all that was lost to him, and the courage needed to face the difficult questions of a meaningful life.
"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 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"
At the core of this story lies a fierce determination to live his life as fully as possible, and a deep appreciation for the gifts of life, love, and family."We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive."
If you're like me, and find yourself inspired to learn more after reading this book:
- A documentary chronicling his experience living with MND, titled 'It's Not Yet Dark' is available to watch on Netflix
- The movie he directed while living with MND, titled 'My Name is Emily' can be watched on Amazon Video
- Ruth Fitzmaurice, Simon's wife, released her own memoir in July 2017, expanding on the impact of Simon's illness on their lives together and their family. It's titled I Found My Tribe
- And, on a sad end note, if you do search the internet for more info, you will learn that Simon did finally succumb to the disease on 26th of October 2017, at age 43. :( He lived his life fully, and was an inspiration!
August 2, 2017
"We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That's hope"
Guys I don't normally read memoirs. And I definitely don't read sad books. I don't know why I decided to read this arc, but it moves me to tears on every page.
Honestly, if you have time then read a few pages. It's such a powerful reminder of life and love.
Excuse me while I ugly cry. This book is beautiful.
Guys I don't normally read memoirs. And I definitely don't read sad books. I don't know why I decided to read this arc, but it moves me to tears on every page.
Honestly, if you have time then read a few pages. It's such a powerful reminder of life and love.
Excuse me while I ugly cry. This book is beautiful.
October 17, 2017
Simon Fitzmaurice had two of the keystones of a happy life: success in his professional life, love in his personal life. Then he noticed how his foot slapped on the pavement as he walked. Then he got diagnosed with Motor Neurone Disease. Then he had everything taken away from him. Or did he?
‘It’s Not Yet Dark’ is the author’s defiant assertion that he is alive and that, like the rest of us, he will live life as fully as he can for as long as he can. Written with obvious courage (not the least example of which being the tenacity to write solely through an eye tracking interface with a computer), the book has many moving moments. To read of the joy felt by Fitzmaurice at the touch of his children in his arms is to become aware of the poverty of our own everyday gripes and groans. And the author doesn’t just offer moving personal testimony. He also moves his memoir into the political arena by raising inconvenient opinion about the medical care of people with MND.
However, as Oscar Wilde said, there is no such thing as a moral or immoral book, only a well or badly written one. And, while the book benefits at times from Fitzmaurice’s clipped cinematic style, especially early on, this begins to grate and, as a result, the book fails to gain a cumulative power. More successfully, for the last third or so of the narrative, Fitzmaurice switches back to his childhood and adolescence. The dramatic irony of knowing what awaits the adult Fitzmaurice offers a well judged, unsentimental layer of pathos that adds greatly to the book’s ending; however, this isn’t enough to redeem the middle section’s longueurs.
If you enjoy poignant real life stories of the uplifting kind favoured by Oprah Winfrey or The Late Late Show, then this book might be for you.
‘It’s Not Yet Dark’ is the author’s defiant assertion that he is alive and that, like the rest of us, he will live life as fully as he can for as long as he can. Written with obvious courage (not the least example of which being the tenacity to write solely through an eye tracking interface with a computer), the book has many moving moments. To read of the joy felt by Fitzmaurice at the touch of his children in his arms is to become aware of the poverty of our own everyday gripes and groans. And the author doesn’t just offer moving personal testimony. He also moves his memoir into the political arena by raising inconvenient opinion about the medical care of people with MND.
However, as Oscar Wilde said, there is no such thing as a moral or immoral book, only a well or badly written one. And, while the book benefits at times from Fitzmaurice’s clipped cinematic style, especially early on, this begins to grate and, as a result, the book fails to gain a cumulative power. More successfully, for the last third or so of the narrative, Fitzmaurice switches back to his childhood and adolescence. The dramatic irony of knowing what awaits the adult Fitzmaurice offers a well judged, unsentimental layer of pathos that adds greatly to the book’s ending; however, this isn’t enough to redeem the middle section’s longueurs.
If you enjoy poignant real life stories of the uplifting kind favoured by Oprah Winfrey or The Late Late Show, then this book might be for you.
December 15, 2017
This is an account of Simon Fitzmaurices strong will to live when facing death or choosing the difficult road of living with ALS. This book hit close to home with my experiences of my husbands health issues dealing with lung disease and being so close to death before receiving the life saving double lung transplant. Many passages throughout the book made me tear up and sometimes just full on cry. You never know how much you appreciate life until you almost lose it. Some quotes that meant a lot to me:
"That's the thing about your death, and the threat of your death: it's not just about you, it pulls in all your loved ones. Everybody's life has stopped." Another one when a neurologist questions why he would want to ventilate and live with such a debilitating illness: "They are there because they have made a decision about my standard of living. To them it is inconceivable that I would want to live. But not for me. For me, it's not about how long you live but about how you live." "ALS is a killer. But so is life. Everybody dies. But just because you will die at some point in the future, does that mean you should kill yourself now?" Most people when faced with this circumstance would have opted to take the sedated approach that eased into death.
I'm so glad I read this book even though it made me cry. Life is a precious gift and a privilege. I have strong feelings that we need to honor this life and fight to live as long as we can. In my eyes, this man is brave and his wife is a strong woman to stay by his side and take care of him and their family. He fought to stay alive for his children and wife and for the sheer love of being alive and experiencing all that life offers even though his mobility is limited and he can only speak with the assistance of technology. I'm so grateful that someone could put into words many of the things that I believe. This is a beautifully written book.
"That's the thing about your death, and the threat of your death: it's not just about you, it pulls in all your loved ones. Everybody's life has stopped." Another one when a neurologist questions why he would want to ventilate and live with such a debilitating illness: "They are there because they have made a decision about my standard of living. To them it is inconceivable that I would want to live. But not for me. For me, it's not about how long you live but about how you live." "ALS is a killer. But so is life. Everybody dies. But just because you will die at some point in the future, does that mean you should kill yourself now?" Most people when faced with this circumstance would have opted to take the sedated approach that eased into death.
I'm so glad I read this book even though it made me cry. Life is a precious gift and a privilege. I have strong feelings that we need to honor this life and fight to live as long as we can. In my eyes, this man is brave and his wife is a strong woman to stay by his side and take care of him and their family. He fought to stay alive for his children and wife and for the sheer love of being alive and experiencing all that life offers even though his mobility is limited and he can only speak with the assistance of technology. I'm so grateful that someone could put into words many of the things that I believe. This is a beautifully written book.
October 10, 2017
At 165 pages, It’s Not Yet Dark is a book I read in one short sitting; but it is one that will stay with me forever. Written using an eye-gaze computer, Simon Fitzmaurice’s beautifully authored memoir is told simply and honestly. Sharing moments from his meeting of wife Ruth, the births of their children, and his successful career as a filmmaker, Mr. Fitzmaurice gives us these amazing glimpses into his life leading up to the moments when he realized something was very wrong. When he was diagnosed with ALS (Lou Gehrig’s disease, or Motor Neurone Disease), it threatened to rob him of his career and, most importantly, his life; but Simon wasn’t having it, and the determination and courage he possesses are what transforms this book from heartbreaking to heartwarming. I adore the way he writes about his wife and children, as well as family and friends. It's a beautiful thing when a man can express his love so eloquently and freely.
This is an eye-opening look at an awful disease and the vastly different approaches medical personnel had in treatment as well as non-treatment plans. An absolutely inspiring story about love, determination, and the will to live, It’s Not Yet Dark is a book I wholly recommend to everyone.
I received a copy of this book in exchange for my honest review.
Review originally posted at A Belle's Tales.
This is an eye-opening look at an awful disease and the vastly different approaches medical personnel had in treatment as well as non-treatment plans. An absolutely inspiring story about love, determination, and the will to live, It’s Not Yet Dark is a book I wholly recommend to everyone.
I received a copy of this book in exchange for my honest review.
Review originally posted at A Belle's Tales.
August 22, 2017
My daughter recommended this book. I lost one of my dearest friends to Amyotrophic Lateral Sclerosis, so I took the recommendation in hopes that I would understand what he experienced. The author wrote this in a first person narrative, that made for a quick moving read. Fitzmaurice like my friend had a deep love for life, and chose to live life to its fullest rather than to succumb to ALS as the beginning of the end. The author prevailed in many ways...love, family and his profession in cinema. Though it was hard for me to read at times, knowing his suffering experiences were the same that my friend also experienced. Although I had to put this book down at times, I do recommend the reading of this book not only for further knowledge and understanding of this horrible and debilitating disease, but to see the strength of the author and how he was still able to describe in his words the beauty of life itself.
January 16, 2022
Wow. Stunning. Breathtaking. Read the book and absorb this author’s love and embrace every second of every day, even if you’re dying
July 19, 2017
"It's Not Yet Dark" is a memoir by Simon Fitzmaurice, a filmaker, father, and husband, who is struck down in the prime of his life by ALS. Even if we are relatively healthy, there is a chance that something could strike us like that without warning. It is a slim chance (luckily!!!) but there is still a chance. Most of us just don't go around thinking about things like that because it would drive us absolutely nuts. It's the fact that this book is so raw that makes it good and that makes it thought-provoking. This situation could happen to any of us.
Fitzmaurice walks us through his diagnosis and the disbelief that he originally has when he starts having issues. He blames it on his shoes at first because the idea that a healthy person like him could have a medical issue that makes it impossible to fully work his foot seems so strange and then things quickly seem to go from bad to worse.
Told in stark prose, this is a story of heartbreak and how you go on living when everything that is happening to you is fully out of your control. How do you embrace family and friends? How do you adapt and move forward? How do you form a new life when reality is so different than what you had anticipated? This book explores all of these topics and more in a really raw and real way. This book is relatively short but it packs a huge punch!
Fitzmaurice walks us through his diagnosis and the disbelief that he originally has when he starts having issues. He blames it on his shoes at first because the idea that a healthy person like him could have a medical issue that makes it impossible to fully work his foot seems so strange and then things quickly seem to go from bad to worse.
Told in stark prose, this is a story of heartbreak and how you go on living when everything that is happening to you is fully out of your control. How do you embrace family and friends? How do you adapt and move forward? How do you form a new life when reality is so different than what you had anticipated? This book explores all of these topics and more in a really raw and real way. This book is relatively short but it packs a huge punch!
March 28, 2022
Extremely touching. He lived 10 years after his diagnosis.
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 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.
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 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.
January 19, 2018
I have been looking for a book like this and the few I have read I have not been really satisfied with. I have wanted a book written by someone with a poor diagnosis but continues to live and enjoy life. Prior books have been too repetitive for me, or the author's seeming too "self important". I don't know, just not relatable.
I felt this one. Now, I do not have ALS, but I felt like Simon's take of things was more similar to mine. I enjoyed how simple things were enough. The love of his wife, his children, his work. "I am happy. I am exactly where I want to be, doing exactly what I want to be doing, with exactly who I want to be with" he writes. I get this. Simple things CAN be enough. "The greatest achievement of my life is that somehow I managed to be the person that Ruth fell in love with. That is it." He writes. And that is OK.
However, he was also honest at the lows and anger that a diagnosis like his can create. It discussed his struggles and his family's struggles. "The threat of your death: it's not just about you, it pulls in all your loved ones" he writes. I get that too. He used such great prose and language to describe his life and struggles and triumphs. Beautiful life.
This was also a book about hope. "Hope is not about looking for a cure to a disease" he writes, "Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That's hope" he finishes. Hope is for another day for happiness in spite of struggles and grief and death.
This was such a nice quick read. Beautiful writing and an honest memoir.
I felt this one. Now, I do not have ALS, but I felt like Simon's take of things was more similar to mine. I enjoyed how simple things were enough. The love of his wife, his children, his work. "I am happy. I am exactly where I want to be, doing exactly what I want to be doing, with exactly who I want to be with" he writes. I get this. Simple things CAN be enough. "The greatest achievement of my life is that somehow I managed to be the person that Ruth fell in love with. That is it." He writes. And that is OK.
However, he was also honest at the lows and anger that a diagnosis like his can create. It discussed his struggles and his family's struggles. "The threat of your death: it's not just about you, it pulls in all your loved ones" he writes. I get that too. He used such great prose and language to describe his life and struggles and triumphs. Beautiful life.
This was also a book about hope. "Hope is not about looking for a cure to a disease" he writes, "Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That's hope" he finishes. Hope is for another day for happiness in spite of struggles and grief and death.
This was such a nice quick read. Beautiful writing and an honest memoir.
May 20, 2017
Irish film maker Simon Fitzmaurice was diagnosed with ALS in 2008, and given four years to live. During a medical emergency, against medical advice, he chose to be go on a ventilator, Why? Because even though he was told that it wouldn't be much of a life, he knew that it wasn't his time to die. Exquisitely written, as the author explores what it means to truly "live" and how the term "to live" is a subjective one. Similar to both "The Diving Bell and the Butterfly: and :My Left Foot." Great for book clubs.
This book was a bestseller in Ireland.
I read an advance copy and was not compensated.
This book was a bestseller in Ireland.
I read an advance copy and was not compensated.
March 3, 2020
This book is such a wonderful piece of art itself. Some of the paragraphs and sections seem disconnected, but then they all come together and it feels as if this is what it is like to be alive: haphazard pieces of thoughts and moving between moments swiftly as we go through life.
I learned that there is so much to celebrate in life, if only we choose to do so.
I learned that there is so much to celebrate in life, if only we choose to do so.
July 28, 2017
This was a very interesting book, written in a very interesting style. It reminded me of reading someone's private journal, the way the author sometimes just writes a few sentences and then moves on to a new paragraph. Sometimes jumping topics from the birth of a child to finishing a film to selling a house. It feel casual but deep at the same time. The book begins before the author starts having symptoms and continues until he is in a wheelchair. I have to admit I don't now that much about ALS, although it is a disease that is getting more attention and research in recent years. The book was very honestly written, that is the best way to describe the author's writing. The authors begins before he has symptoms and walks us through his diagnosis. He talks about his family, the disease and how to go on living in the midst of a diagnosis like ALS. It is hard to read at times and was also very sad at times, but also very honest. I think it is an important look into the life of someone with ALS and how to keep on living after such a devastating diagnosis.
Thank you to the publisher HMH for sending me an advanced reading copy of this book.
Thank you to the publisher HMH for sending me an advanced reading copy of this book.
April 6, 2018
I think that one of the most tragic diseases to have is ALS. A very poignant and insightful book, short but good.
May 30, 2023
Beautiful read. What a fierce and positive voice
April 28, 2019
Lovely memoir about a man with ALS. His story gives the reader much to ponder about life and death.
April 24, 2024
tranen in m'n ogen
September 4, 2018
This is an arresting story about choosing to live, told by the exceptional man who made the choice.
As Fitzmaurice first began finding success as a film maker, he also began experiencing symptoms of what would later be diagnosed as ALS--Lou Gehrig's disease. He and his novelist wife were quite happy living in the Irish countryside in a small home chosen specifically to afford them to live the life they desired. Children, artistic freedom, a view of the sea, and isolation from the bustle of suburbs.
The real tale begins once Fitzmaurice is diagnosed. As he states in the book, it is not important for us to know the intricate details of ALS or for us to know the mechanics of its progression. What is important to know is this: having survived respiratory failure with the aid of a ventilator, an NHS doctor advised him to accept his fate, discontinue the ventilator, and say his good-byes to his family. Fitzmaurice surveyed his life--his love for his wife and children, his love for his art, his desire to continue--and chose to live. So, he did. He continued to write/direct/produce films (and children)even as the disease robbed his ability to walk, then to speak, then to move his arms or legs. The glaring point here is he did not merely survive, he lived his life more fully than many of us who are not ALS patients manage to do.
Strikingly, he writes not one bitter sentence. Nor does he allow himself the allure of self pity. Throughout his journey he remains loving, grateful, and optimistic. This is not to say that he is pollyanna. He readily acknowledges the stabs of pain wrought by his inability to play with his children, for example. But he counters that pain with the joy he feels gliding along the street in his motorized wheelchair while holding hands with his eldest son. On the occasion of having his newborn twins placed in his no non-functioning arms he, he writes that his joy is so enormous that he would not change ALS even if he could. I might point out here that he and his wife conceived the twins long after he could no longer voluntarily move his body. Again, he chose to live.
The writing is brilliantly economical and bares Fitzmaurice's love of poetry. Musical, poignant, and arresting (there's that word again) And never mind he used an eye-gaze computer to write this book. It's difficult to choose a favorite passage from his writing so I won't even try. Following is one of many passages that speak to me in a profound way:
"Some days you can just see clearly. Our meaning, what we value, is the most
private part of us. It may just define us. It shapes everything we do, everything we say,
everything we feel, everything we dream. It's hidden, from others, from ourselves.
There is no mirror to show us after the fact, in the long movie reel of memory.
And when we see it, our heart stops, aching with recognition.
It is a beautiful thing to see yourself"
Diagnosed in 2008 and expected to survive 3 - 4 years, Fitzmaurice died October, 2017.
Actor Alan Rickman is credited with characterizing this book as 'life affirming'. It is, indeed, that. I recommend this book for everyone. Those in particular who desperately need this book are the lost souls shuttered in the miasma of victim-hood. I am referring here to the people who, upon awaking in the morning and realizing they are still alive, are pissed off for the rest of the day. Those who might win the lottery but bitch about the taxes due. Those who look for the flaw in every diamond.You know the type. And if you ARE the type, please read this book. Your life and the life of everyone around you will benefit. At the very least, you will drink in 177 pages of beautiful writing.
As Fitzmaurice first began finding success as a film maker, he also began experiencing symptoms of what would later be diagnosed as ALS--Lou Gehrig's disease. He and his novelist wife were quite happy living in the Irish countryside in a small home chosen specifically to afford them to live the life they desired. Children, artistic freedom, a view of the sea, and isolation from the bustle of suburbs.
The real tale begins once Fitzmaurice is diagnosed. As he states in the book, it is not important for us to know the intricate details of ALS or for us to know the mechanics of its progression. What is important to know is this: having survived respiratory failure with the aid of a ventilator, an NHS doctor advised him to accept his fate, discontinue the ventilator, and say his good-byes to his family. Fitzmaurice surveyed his life--his love for his wife and children, his love for his art, his desire to continue--and chose to live. So, he did. He continued to write/direct/produce films (and children)even as the disease robbed his ability to walk, then to speak, then to move his arms or legs. The glaring point here is he did not merely survive, he lived his life more fully than many of us who are not ALS patients manage to do.
Strikingly, he writes not one bitter sentence. Nor does he allow himself the allure of self pity. Throughout his journey he remains loving, grateful, and optimistic. This is not to say that he is pollyanna. He readily acknowledges the stabs of pain wrought by his inability to play with his children, for example. But he counters that pain with the joy he feels gliding along the street in his motorized wheelchair while holding hands with his eldest son. On the occasion of having his newborn twins placed in his no non-functioning arms he, he writes that his joy is so enormous that he would not change ALS even if he could. I might point out here that he and his wife conceived the twins long after he could no longer voluntarily move his body. Again, he chose to live.
The writing is brilliantly economical and bares Fitzmaurice's love of poetry. Musical, poignant, and arresting (there's that word again) And never mind he used an eye-gaze computer to write this book. It's difficult to choose a favorite passage from his writing so I won't even try. Following is one of many passages that speak to me in a profound way:
"Some days you can just see clearly. Our meaning, what we value, is the most
private part of us. It may just define us. It shapes everything we do, everything we say,
everything we feel, everything we dream. It's hidden, from others, from ourselves.
There is no mirror to show us after the fact, in the long movie reel of memory.
And when we see it, our heart stops, aching with recognition.
It is a beautiful thing to see yourself"
Diagnosed in 2008 and expected to survive 3 - 4 years, Fitzmaurice died October, 2017.
Actor Alan Rickman is credited with characterizing this book as 'life affirming'. It is, indeed, that. I recommend this book for everyone. Those in particular who desperately need this book are the lost souls shuttered in the miasma of victim-hood. I am referring here to the people who, upon awaking in the morning and realizing they are still alive, are pissed off for the rest of the day. Those who might win the lottery but bitch about the taxes due. Those who look for the flaw in every diamond.You know the type. And if you ARE the type, please read this book. Your life and the life of everyone around you will benefit. At the very least, you will drink in 177 pages of beautiful writing.
February 1, 2015
Simon Fitzmaurice has Motor Neurone Disease. The prognosis of this neurological disease isn't good, the doctors told him he had three to four years to live, that was in 2008. After having severe respiratory problems Simon decided he didn't want to die, he wanted to live as he wasn't done yet. The doctors didn't agree with him and told him to give up, but he managed to get a ventilator to help him breathe.
Simon is a film maker and he's won several impressive prizes. When he has some problems with one of his feet he's in such a good period of his life. He's met the love of his life, is living in a nice house and has just started a family. Even though he slowly loses most of his abilities after that there's one thing that keeps him going. He wants to live and experience life. He's not ready to leave his loving family and to abandon his greatest passion which is film. He can move his eyes, which means he can communicate. He's written this book with the help of an eye-gaze computer.
It's Not Yet Dark is impressive. Not only because of the remarkable Simon Fitzmaurice and his wonderful view of the world, but also because of his beautiful sentences. Everything he writes is good. I loved reading about his family, about the things he's done in his life and his philosophical thoughts. This book is such a support for people who are struggeling to build a life around their illness. Simon focuses on what he can do and he manages to use that at maximal capacity, which is amazing. I admire this author and his book very much, it's filled with love and hope from beginning to end.
Simon is a film maker and he's won several impressive prizes. When he has some problems with one of his feet he's in such a good period of his life. He's met the love of his life, is living in a nice house and has just started a family. Even though he slowly loses most of his abilities after that there's one thing that keeps him going. He wants to live and experience life. He's not ready to leave his loving family and to abandon his greatest passion which is film. He can move his eyes, which means he can communicate. He's written this book with the help of an eye-gaze computer.
It's Not Yet Dark is impressive. Not only because of the remarkable Simon Fitzmaurice and his wonderful view of the world, but also because of his beautiful sentences. Everything he writes is good. I loved reading about his family, about the things he's done in his life and his philosophical thoughts. This book is such a support for people who are struggeling to build a life around their illness. Simon focuses on what he can do and he manages to use that at maximal capacity, which is amazing. I admire this author and his book very much, it's filled with love and hope from beginning to end.
May 18, 2017
The very fact that It's Not Yet Dark exists is phenomenal, when one thinks about it; the entirety was written using an eye computer. In his memoir, Simon Fitzmaurice charts his decline after being diagnosed with Amyotrophic Lateral Sclerosis (ALS), a rare form of neurological disease, which is also known as Lou Gehrig's Disease, and Motor Neurone Disease.
Fitzmaurice's writing is beautiful, and he goes back and forth in time throughout, creating a wonderfully lucid, and incredibly touching reflection of a life well lived. Never does one get the impression that Fitzmaurice is pitying himself; rather, he demonstrates that he has so much to live for. It's Not Yet Dark is heartfelt and brave, and really makes you think about what it means to be alive. A lovely, thoughtful, poignant, and achingly sad musing upon life, and how drastically it can change.
Fitzmaurice's writing is beautiful, and he goes back and forth in time throughout, creating a wonderfully lucid, and incredibly touching reflection of a life well lived. Never does one get the impression that Fitzmaurice is pitying himself; rather, he demonstrates that he has so much to live for. It's Not Yet Dark is heartfelt and brave, and really makes you think about what it means to be alive. A lovely, thoughtful, poignant, and achingly sad musing upon life, and how drastically it can change.
August 24, 2017
The prose is spare. Emotions are deep. The love is strong. Event stories flip back and forth over time. More a book about love and feelings than a book about ALS.
So, you can read it quickly but slow down a little to savor the skill in the storytelling. Appreciate the love: of life, of children, of films, of family. See if you can find his movies to watch - they're sure to add depth to experience.
So, you can read it quickly but slow down a little to savor the skill in the storytelling. Appreciate the love: of life, of children, of films, of family. See if you can find his movies to watch - they're sure to add depth to experience.
May 9, 2018
Renown Irish filmmaker Simon Fitzmaurice is diagnosed with Lou Gehrig’s Disease at the age of 34 and is given 3-4 years to live. He lives for 9, publishing this book 3 years before his death in 2017. Lyrical, poetic, candid, enlightening, moving, and remarkable. That‘s how i describe his memoir, and also, his life. Now I want to watch his films a d the documentary on him. This is a book that will stick with me for awhile.
February 1, 2018
This is an incredibly short story about the author and his journey through life with Lou Gehrig's disease. I have mixed feeling about the book. Sad because of him getting this disease but also happy because he chose to LIVE with it and continue living with it longer than the doctors gave him to live.
August 2, 2017
Fantastic book! Reminds you that life is what you make it.
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