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.
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.