When we talk about motor neurone disease and human rights, the argument is usually around the right to die. But we rarely hear the argument for the other side, the right to live. That is probably because the silent question that is often asked, but rarely spoken, is 'why would anyone want to live with MND?'
In 2008, Simon Fitzmaurice was diagnosed with motor neurone disease. At the time, he was a young father of two, and his wife Ruth was pregnant with their third child. He was given four years to live.
A quick calculation will tell you that he has defied those odds quite dramatically. In his new memoir, It's Not Yet Dark, the Greystones, Co Wicklow, resident tells his story, from falling in love with his wife, to the elation of career success to the devastation and terror of his diagnosis to the joy that his five children bring into his life on a daily basis.
In telling his story, his reasons for wanting to live coalesce with a beautiful and painful clarity.
By painting an impressionistic picture of the happiness he finds in family life, he makes a strong argument in response to those who would ask why anyone with MND would want to prolong their life.
He tackles the question head-on too. In 2010, when he experienced respiratory failure, the option of getting a home ventilator was all but ruled out for him. People with MND tend to die of respiratory-related complications. A ventilator helps patients with MND breathe when their muscles are too weak to do this independently. In his book, Simon recounts the moment when his consultant told him the devastating news that ventilation was 'not advocated' for patients with MND.
"He tells me that there have been only two cases of home ventilation but in both cases the people were extremely wealthy. . .While he is looking at me, my life force, my soul, the part of me that feels like every part, is unequivocal. I want to live."
Two days later, Simon and his family discover that a home ventilator, the one that is not advocated, is covered by the medical card, which has given him an extended life, and has allowed him and his wife to have two more children, the twins Sadie and Hunter. "Ruth and I treasure the physical connection we still have," he writes. "And we had decided, privately, to try for another child.
"The ultimate expression of being alive. . . My willy works. It's that simple. The day I found out that MND didn't affect my penis was a red-letter day. Unlike a spinal injury or condition, MND does not take away any feeling from my body. It removes my ability to send messages to my muscles to move. But as the penis is not a muscle, it is unaffected."
Back in the hospital room, when faced with the questions 'why would you want to ventilate?' or 'why would you want to live, having motor neurone disease, not being able to move your arms and your legs?' he gives a convincing answer. "The answer is the same as that given by 'mostly dead' Westley in The Princess Bride, when replying to the question posed by Miracle Max: 'What's so important? What you got here that's worth living for?' 'Truue loove' is his response. That's how I feel. Love for my wife. Love for my children.
"My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. 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. You have motor neurone disease: why would you want to live? Motor neurone disease 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? For me, they were asking me to commit suicide. Or to endorse euthanasia. I refused."
THERE have been a few landmark moments for motor neurone disease in Ireland. Marie Fleming's High Court battle for her right to die was one; Anna Rodgers' documentary on the RTÉ broadcaster Colm Murray's battle with the disease was another. Now, Simon Fitzmaurice's memoir, It's Not Yet Dark, must be added to that list.
It is already being compared to defining memoirs like The Diving Bell and the Butterfly. And it's easy to see why. The book is sparsely and beautifully written. The story opens with a vignette of life as it is now, with Simon paralysed, in a motorised wheelchair, eating through his stomach, breathing through his neck, using eye movements to communicate through an 'eye-gaze' computer. His is a life of difference, a life where he can never be invisible as he once was. Anonymity is a privilege that many of us take for granted. And then the story jumps back in time.
Before his diagnosis in 2008, Simon was working as a filmmaker. He had just had a film accepted into Robert Redford's Sundance Film Festival, one of the most prestigious film festivals in the world. The following month, his foot dropped. The effect was confusing. He thought perhaps it was a result of climbing a Himalayan mountain the previous year and then wearing funky shoes with little support.
A few months later, the problem had not improved. He got tests and went to see a neurologist. The tests were excruciatingly painful, involving needles being prodded into nerves. He wanted the pain at the time because his wife had just had a miscarriage and he wanted to feel something.
On the day he got his diagnosis, his wife told him she was pregnant with their third child. They bought a cottage in the middle of nowhere, a place where they could both concentrate on writing full time (his wife Ruth is a novelist). Simon's dream had always been to have a home cinema and he set to work on the project, even though the overwhelming sense is that life and all of their previously held dreams have changed irrevocably.
He goes through denial. He and his family are determined to prove the diagnosis wrong, looking for any possibility of misdiagnosis, and then for research that might help reverse his condition. He calls himself, and those like him, the hopeful and the desperate, willing to try anything, to pay anything to any sort of healer or programme that might make a difference. Nothing does.
The progression is stark and frighteningly fast. A few months after his foot dropped, he danced at his sister's wedding. This will be the last time he will dance. Simon is probably one of the fittest and healthiest people with MND, but he admits it doesn't matter. It carries on, relentless.
ACCEPTANCE slowly comes creeping in, as the disease starts to take hold and Simon moves from limping to using a manual wheelchair to using a motorised one.
Even though the cottage was their dream, living in the middle of nowhere in rural Ireland is not compatible with life as it is now. They move back to Simon's hometown of Greystones, Co Wicklow.
Despite the difficulty of such a diagnosis, Simon's joy in his children and his wife is palpable. He takes his sons out individually around Greystones. They sit perched on his lap in his wheelchair. His twins clamber on him in bed and touch his face.
In between his unflinching account of life with MND, we learn the story of his life. His life as a boy, when his father first introduced him to his love of film. His life as a young man working abroad with his father. His life as a student travelling and partaking in rites of passage. His life as a man in love and driven to win the woman of his dreams. The story of life before MND and after MND is obviously radically different, but the point that comes across, loud and clear, is that despite the struggle and the difficulty he and his wife now have to deal with, despite the unfairness of their situation, despite the fact that Simon is viewed differently to others, his is a life worth living.
In between recounting the terror of death, staring it in the eye and never using platitudes about having made peace with it or accepted it like some sort of saint; the human spirit and will to live shines out of these pages. When he writes 'I am truly happy,' it makes sense that he would be, having read about the pleasures that his work and his family bring him on a daily basis. By the time you reach the end of this book, with tears of admiration, sadness and frustration in your eyes, the question is no longer why would you want to live... but how could you not.
'IT'S NOT YET DARK' BY SIMON FITZMAURICE IS PUBLISHED BY HACHETTE IRELAND