‘It’s not how long you live. It’s how you live’

One of the first things I notice when I visit the film-maker Simon Fitzmaurice at his home in Greystones, Co Wicklow, are his shoes. His lace-ups have pristine white soles. That's because these are shoes that don't walk anywhere. Fitzmaurice, who is 39, has motor neuron disease, and the only parts of his body he can now move are his watchful, expressive, beautiful eyes.

It was a pair of shoes that gave the first unsettling warning of Fitzmaurice’s illness. As he walked into Dublin city centre one untroubled morning, in a pair of “brown and red funky things with no support whatsoever”, his foot began to slap against the pavement. Thinking he might have damaged it in a recent climbing expedition, he went to try on some running shoes in an outdoors shop off Grafton Street.

Fitzmaurice breezily asked if the salesman had ever come across a poor-quality shoe causing a floppy foot. “No, I’ve never seen anything like that before,” the salesman replied. “The look in his eyes becomes a twinge in my stomach,” Fitzmaurice recalls. “My first diagnosis is by a shoe salesman.”

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Awake and present: Fitzmaurice pictured at home with his wife Ruth O’Neill and five children Jack, Raife, Arden, Sadie and Hunter this week. Photographer: Daniel O’Connor

This is how Fitzmaurice opens his book, It's Not Yet Dark. Part memoir, part stark document of the way he 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.

He was officially diagnosed in 2008 and given four years to live. Two years later, in a state of lung-function collapse and against all prevailing medical opinion, he chose to ventilate at home. “To them it is inconceivable that I would want to live,” he writes of the medical staff who questioned why he would want to ventilate. “For me, it’s not about how long you live but about how you live.”

Fitzmaurice wrote the book to create something for his five children from the father who can no longer take an active part in their lives.

He wrote it using eye-gaze technology. The screen of a tablet computer fixed to the front of his wheelchair shows a large keyboard. When Fitzmaurice looks at a letter for a second or so, the software types it. When he wants to make his sentences heard, he looks at an icon that says “Speak”, and a slightly disjointed American accent booms out.

Before I arrive at his house, Fitzmaurice has used the technology to answer some questions by email – as he has used it to communicate with family and friends and to keep in contact with the wider world.

“The technology of my computer allows me to have a voice, spoken and written, and I’ve learned that my humanity, my identity, hinges on my voice,” he replies. “My voice, in line with my senses of touch, sight and hearing, comprise my existence. Without a voice I would be utterly lost to the world.”

Still point

The day I visit, the Fitzmaurice house is crowded with people yet remarkably serene. The utterly still point of the house is where Fitzmaurice sits immobile, in a kitchen and living room overlooking the garden, his wheelchair under roof windows full of sky.

His wife, Ruth O’Neill, and their five energetic children – eight-year-old Jack, six-year-old Raife, five-year-old Arden and two-year-old Sadie and Hunter, who are twins – are here with Fitzmaurice’s mother, Florence, two of the older boys’ schoolfriends, a full-time carer and one of the two nurses who provide Fitzmaurice with 24-hour care. All of these people come in turn to Fitzmaurice, satellites orbiting a fixed star. O’Neill frequently kisses the top of his head and pats his hand.

The older boys hold up their artwork for admiration. The nurse checks something. Pappy, the family’s grumpy basset, lies alongside the wheelchair. Fitzmaurice’s mother stands in the doorway, smiling at her son and shooing the visiting boys between rooms.

The toddler twins demand turns on his lap. “Up! Up!” they say. “Mind Dada’s pipe,” O’Neill says, and they sit well clear of the tracheotomy tube that connects Fitzmaurice to the ventilator that keeps him breathing.

Explaining how the couple conceived despite his condition, he writes in the book: “My willy works. It’s that simple.”

I have asked Fitzmaurice how he thought he would have coped with his diagnosis if he had been single. He writes: “If I didn’t have Ruth and my five children I don’t think I would have made it this far with MND. I would have made it a certain distance because I’m an inherently stubborn bastard. But Ruth and my children are my fuel, I run on my love for them. It doesn’t matter who or what you love, it only matters that something outside of your life fuels your desire to live.

“I love my parents and my sisters, so if I had been single I could have fought to live for them. I did want to live for the inherent act of living, of being alive. But none of us live in a vacuum, we live for people or purpose.

“So it’s not about being single or otherwise. It’s about having something that keeps you going, something worth living for. For me that is love. I cannot imagine putting up with all that has rolled over me without my loved ones. Every single one of them.”

Many able-bodied people are well-meaning but initially clumsy around those who are not, such as Fitzmaurice. How can they act more thoughtfully?

“It sounds very simple, but if done out of love, there is nothing anyone can do or say that is wrong. And, personally, the only thing I want is to be treated as the person I am, not the disease I have.”

O’Neill says with bitter-sweet affection that her husband used to be a real talker, but “there’s no waffle any more. Everything he says is condensed into short, profound statements.”

They communicate via the computer, which can also send text messages to her phone when she is out, or even when she’s cooking in the kitchen.

Although she had seen snippets of his manuscript, she didn’t read the whole book until the first printed copies arrived. It was O’Neill who originally encouraged her husband to write the book. She read it alone one night lately, with a glass of wine, when everyone else was in bed apart from the nurse in a nearby room, listening in on Fitzmaurice’s breathing via a baby monitor.

Rush of thoughts

“I had a little cry,” she says. “Simon’s communication has diminished quite a lot, so to get this rush of inner thoughts all at once was a gift. We try to keep talking to each other and be a team, and I’ve been through the diagnosis with him, but I still don’t know what it’s like for him. The book has helped me and the rest of the family so much. It is a massive insight into how he feels.”

Another of the questions I have asked Fitzmaurice is: “When you are so intensely aware of living, does that awareness sometimes become exhausting?”

He writes: “I want to be awake. To be present in my life. That is not the thing that tires me. I struggle with sadness. I wrestle with motivating myself every day to scale the barriers imposed by MND. Barriers separating me from everyone else. Every day I have to push myself to make the effort involved in the simplest of things. Getting up. Going out. I’m a rigmarole of effort and the help of other people. That tires me. But I fight on.”

From time to time during my visit I sit on the couch and watch from behind the wheelchair as Fitzmaurice uses his eye-gaze computer, to see if I can understand more clearly how it works. As he types, the computer from time to time brings up phrases he has recently used with other people.

One of the lines briefly appears on the screen, a glowing sentence that reads like a haiku of love from husband to wife: “I know you just want to protect me.”

It's Not Yet Dark is published by Hachette Books Ireland