It's Not Yet Dark. Simon Fitzmaurice. Hachette Ireland. €11.24.
The global phenomenon that is the Ice Bucket Challenge has focused attention on a little understood condition, but Simon Fitzmaurice found out about Motor Neurone Disease the hard way.
He had it all. He was young, married, with two small children and a cottage in the country. An aspiring writer and director, his first short film, Full Circle, had also just won first prize at the Cork Film Festival and was about to be screened at Sundance.
Then one day he notices that his shoe is slapping on the ground, "like my foot has gone to sleep and is limp". He goes for tests which involve inserting needles directly into his nerves. It is "the most pain I have ever experienced". Afterwards he goes to France, where he learns that his film has won a prize in Paris too. He also discovers he has motor neurone disease and has four years at most left to live.
"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," Fitzmaurice writes in this extraordinary memoir. Not so for him. "I am exactly where I want to be, doing exactly what I want to be doing, with exactly who I want to be with." Suddenly he has to face the prospect of this perfect life being snatched away from him. Death becomes his constant companion. He waits for "last times". The last time he will run with his children. The last time he will be able to stand up. He reaches that point after collapsing on the tiles in the hall of his cottage.
Together, he and his wife, Ruth, search for cures and miracles in a "musty blend of Catholicism and mysticism", visiting faith healers, one of whom is memorably described as "travelling around like a broken bit of Ireland, a suitcase full of dogma, as desperate for belief as the people who come to see him." He tries a clinic in England, "populated by the desperate and the hopeful, I among them", that offers experimental treatment. "We are all trying to believe it's not another scam."
This too proves a false promise, and Fitzmaurice finally faces the reality that he is not going to be cured. "I wish that all things happened for a reason...but I don't believe it. And it's arrogance and a burden to tell someone who's sick that it's their fault if it's not."
Back home in Ireland, he gets pneumonia. Twice. He can't breathe. If he wants to live, a machine will have to do it for him. That's when he finds out that doctors "do not advocate ventilation in this country" and that it is too expensive for him to have it done privately. The entire family is devastated. He might die at any time. Two days later, they discover that home ventilation is covered by the medical card.
To the doctors, it was simple: Why would you want to ventilate, when you're paralysed and will only get worse? Fitzmaurice sees it differently. To him, they are asking: Why would you want to live?
"I have many reasons, if they are prepared to listen. But that is not why they are here…. 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." In his mind, they were either asking him to commit suicide, or to endorse euthanasia, and he will do neither. "I want to live. Is that wrong?" He is now two years past the date at which he was expected to die. He has a new computer with technology that allows him to write - including poems and a script for his next film. He and his wife have had more children. "I seem to thrive on things trying to kill me...I'm still alive, you bastard."
Fitzmaurice is critical of current medical practice in Ireland, and is critical of some of the advice and treatment he received. But It's Not Yet Dark is not an angry or bitter book, because he has too much to celebrate. His love for film and the act of making them is palpable. His pride in his children and his desire to want to be worthy of them. Most of all, there is his wife, Ruth. In many ways, this whole book is a love letter to her. It's his story, but she makes sense of it for him.
The beauty of this short book is that it is so simple. He writes in the episodic, fragmentary way which is so suited to the zeitgeist. Hardly surprisingly, he has a wonderfully cinematic eye too, painting glorious word pictures of being stranded in Atlanta during a rare snowstorm or teaching among the grey tower blocks of Ukraine among sinister men with dead eyes and guns.
The word inspirational is over-used, but if ever a book deserved the epithet, this is it. "I like being alive," he says, and in doing so demonstrates just what a profound and moving statement that is.