ARC for review.

Simon Fitzmaurice, up and coming Irish filmmaker, young father, his film "The Sound of People" is selected to be shown at Sundance and immediately on the heels of that his beloved wife has a miscarriage and then, a "strange slapping sound," which is his foot on the pavement (which he immediately knows is something significant), followed by a diagnosis of ALS. .

He goes to Sundance (love his description of the snow amidst the insanity of the crowds and the flashbulbs, "like a bus ride through downtown Delhi at night or- as a passer-by put it-a nuclear winter in Mardi Gras.") pre-diagnosis, but we, the reader, know what is coming and, again, so, perhaps does Fitzmaurice. Not specifically, perhaps, but he seems to know, and perhaps this is only looking back, but it's like he knows this is the last truly good time.

After diagnosis, Fitzmaurice recounts a quick downturn in his health...he goes almost immediately from testing to the last time he holds his son Jack and he talks about "last times" quite often. Is he lucky, in that he knows about his last times, when most of us won't have that luxury? He's given three to four years to live, and, again, so very lucky in that he has his wife, Ruth and his wonderful parents and family supporting him. He and Ruth make the decision to have a third child (argue you it if you will), and he notes that both he "and his family are determined to prove the diagnosis wrong or find a treatment. So we pursue every thread. Every possible mimicking illness, every alternative blood test, every experimental trial. It is a long road, but it gives us hope, a focal point to lift our eyes from the life that lies in tatters all around us. Because 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." I hope that Fitzmaurice realizes how very lucky he is in that, because that is simply not true of so many people - many do not have such a large tribe of dedicated loved ones who give their all to one of their members. He sees the requisite new age and self-styled healers and though sometimes he feels some psychic relief, he admits that not one of them has a bit of affect on the progression of the disease.

And progress it does, because three to four years is not a long period of time from health to death, especially considering the debilitation that comes with ALS. He notes, "ALS does not let you rest. It does not let you adapt. It does not give you space. ALS takes and keeps taking. Or, rather, I keep losing more and more of my life." He continues to travel, to seek alternative treatments, but ALS is a monster, and a known one. Nothing works, nothing changes. And so, they try something different. His immediate family packs up and moves to Australia - Simon and Ruth feel trapped in their home, trapped in their home country, trapped amidst the fog of the constancy of the disease, so they remove themselves from it.

They go for six weeks and they stay for six months. Fitzmaurice notes, "it is one of the best times of our lives and it changes everything." They have a couple of friends there who can help them (again, one can't help but note the luxuries the author enjoys - the ability to move abroad for six months, the presence of friends to help them) and Fitzmaurice determines that he can either "accept that he has ALS or give up," as if, perhaps, all the searching for alternative cures has been an effort to deny what is really happening to him. He decides to accept it and to use this respite to write, to enjoy his wife and children, to live.

But time passes, as it must, and the idyllic gap is over. He recalls that "I have been told I am going to die. Very soon. And ease has left me." and "I am not brave in the face of death. I am terrified," afraid of the distance that is to come between him and Ruth, him and the children and then, the real distance, his absence from the world. And it is time to go home.

Upon his homecoming he begins to become very ill and, for the first time, the reader learns of a large difference between the way Ireland and America treat ALS patients. Fitzmaurice is admitted to the hospital in respiratory failure (this is the way most ALS patients eventually die) and he learns that Ireland "does not advocate ventilation for ALS patients." So, ALS patients in Ireland are not routinely put on a ventilator for survival - which would mean that Fitzmaurice's "choice" in the words of hospital personnel, would be to simply be allowed to slip away. But Fitzmaurice argues. He wants to live. The hospital neurologist tries to reason with him, "'why would you want to ventilate? You have ALS and you are only going to get worse. At the moment you have the use of your hands but the paralysis will grow, will get worse."

Ultimately, it's a different (for me) look at a timely issue. So often, in America, we focus on the right to die with dignity....essentially, why should one HAVE to ventilate? In Ireland, it's the opposite, but Fitzmaurice wants to live, and, as the other side of the death with dignity coin, shouldn't he have the right to that? Obviously this is where questions about a National Health system come in and to tell any more would be to risk spoilers, so I shall stop here.

Fitzmaurice's writing is choppy, almost stream of consciousness, which, although it's been years since I read it, is what I seem to remember from [title: The Diving Bell and the Butterfly] and, obviously, that would make sense from an author writing this memoir from the late stages of the disease. It also fits - his life expectancy is short. His goals are short-term. Shorter makes sense. He doesn't have time or energy for long, flowery passages, nor should the reader expect them from him.
It's an interesting story and, as mentioned, has a bit of a different perspective. Fitzmaurice certainly has resources that many patients do not share, but all of us face death, which levels the playing field a bit and any reader can gain something from Fitzmaurice's observations, his struggles, his triumphs.

Working in healthcare as an occupational therapist, I'm familiar with the effects of ALS on both the individual with the condition, as well as the family. The author was diagnosed with ALS in 2008 when he was just 34 years old, and given an estimate of 4 years to live. Two years later, due to a quick decline, he required mechanical ventilation due to the inability to breathe on his own. He made the decision to ventilate against medical advice. While I personally would probably not choose that, I admire his decision due to believing that was the best decision for his situation, and not being quite ready to give up. His tenacity was very evident, as he managed to write the book using a computer and eye-gaze technology (a process of using eye movements to select keys on the computer to enable either speech or written output).

The book reminded me of Tuesdays with Morrie, even though Morrie was much older than Simon. Both wanted to live as fully and with as much quality of life as possible for whatever time remained. Morrie made the statement “The truth is, once you learn how to die, you learn how to live,” and Simon stated, “For me, it is not about how long you live, but about how you live.” Both books managed to portray stories that were heartbreaking, yet inspirational and hopeful at the same time.

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.

<blockquote>“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.” </blockquote>

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.

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.

Houghton Mifflin Harcourt and NetGalley provided me with an electronic copy of It's Not Yet Dark. I was under no obligation to review this book and my opinion is freely given.

Simon Fitzmaurice is a filmmaker with a story to tell, one regarding his own life and his fight to stay alive for his wife and children. Despite being given a poor prognosis from his doctors, this courageous man is battling ALS, known also as Lou Gehrig’s disease, beyond his last unaided breath. Employing an eye-gaze computer, the author is able to give readers a bare boned look at his life with his wife and five children. Although the debilitating disease has slowed him down, Fitzmaurice has refused to give into his situation.

The story is compelling, but not without problems. The short sentence structure, coupled with essays that are out of sequence, give the book a disjointed feel. I do wish the author had elaborated on some of his stories, as there feels like the book has just scratched the surface of his life. I would recommend It's Not Yet Dark to readers who like memoirs.

"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.

Reflecting on life is an important aspect of the extremely powerful memoir which is titled IT'S NOT YET DARK and written by Simon Fitzmaurice. An award-winning film maker and mountain climber, Fitzmaurice was in his 30's when he began to notice difficulty moving his foot. The subsequent diagnosis of ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, was a shock for him and his wife Ruth, pregnant with their third child. He tells how they decided to live to the fullest, spending several months as a family in Australia, moving house in Ireland, fighting for his right to a ventilator and even considering another pregnancy. One can read the 176 page memoir fairly quickly, but there is much to contemplate. Fitzmaurice's writing is a stimulating contrast between matter-of fact observation and emotional reflection:

"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. ... So often, it is only revealed to us after the fact, in the long movie reel of memory. And when we see it, our heart stops, aching with recognition."

Online review contains embedded video trailer and list of similar titles:
Also titled IT’S NOT YET DARK, the documentary about Fitzmaurice is narrated by Colin Farrell. A trailer appears below: https://www.youtube.com/watch?v=2BOhBDXq5A8
See also
When Breath Becomes Air by Paul Kalanithi http://treviansbookit.blogspot.com/2016/02/when-breath-becomes-air-by-paul.html
Diving Bell and the Butterfly by Jean-Dominique Bauby
Stir by Jessica Fechtor http://treviansbookit.blogspot.com/2015/06/stir-by-jessica-fechtor.html

One month after his film was accepted into the Sundance Film Festival, Irish filmmaker Simon Fitzmaurice's foot began 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.

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?"

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 description of precious moments 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.

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.

This is an amazing book. Simon Fitzmaurice tells of his strength coping with Motor Neurone Disease. He tells how love and family and determination keep him going. A beautifully written book that shows bravery and determination and strength. I laughed and I cried. This book has taken so much effort to write. It is definitely worth reading.

BROOKE’S REVIEW
This memoir from filmmaker Simon Fitzmaurice takes readers on an emotional journey. We journey with Fitzmaurice as he deals with living a life with ALS. Though many people may think of ALS or motor neuron disease as one that affects older populations, it is also one that can strike individuals as young as 20-30.
When Simon was diagnosed at 33, he was given a life expectancy of 3 - 4 more years. For a young filmmaker with a wife and children, life-altering would be an understatement in terms of the diagnosis.

Fitzmaurice brings to light many ethical issues that transcend his own case - the costs of medical treatment, the right to live, and who is equipped to make end-of-life choices. He doesn’t necessarily attempt to approach these in a political manner, but I am reminded that the individual is political while reading.

Like Thoreau, Simon strives to “live deep and suck the marrow out of life.” He continues to direct films and wrote his memoir using a Tobii I-15 eye-gaze computer. I doubt Fitzmaurice strives to be inspirational, but he is. If he can continue to create art and focus on living life with a neurodegenerative condition, what excuse do the rest of us have?

PRAISE

“[A] gripping, affecting, sometimes funny read by a natural-born storyteller with something to say about the weight and the value of a life…If you need a story of courage, of heart, of coming back for more, of love and struggle and the power of both, It’s Not Yet Dark could be the elusive thing you’re after.” —Joseph O'Connor

“Beautifully written. Utterly life-affirming.”
—Alan Rickman

“A beautiful love story - in its essence that’s what this is. Survival stories are not about surviving, they’re inherently about what makes a survivor push through. A desire to remain in the light of all creation, even as a darkening is taking place. A darkening which happens to us all.”
—Colin Farrell

“Part memoir, part stark document of the way [Simon] and his family have dealt with motor neuron disease, and part fierce celebration of being alive, It’s Not Yet Dark is powerful, gripping and compelling.”
—The Irish Times

AUTHOR

Simon Fitzmaurice is an award-winning writer-director. His films have screened at film festivals all over the world and won prizes at home and abroad. He writes regularly for the Irish Times. His short fiction has been shortlisted for the Hennessy Literary Award and his poetry has appeared in the quarterly publication West 47. Simon is currently working on his first feature-length film, My Name is Emily.