FAREWELL TO SIMON – THE MOST UPLIFTING MAN EVER
Simon Fitzmaurice died yesterday ... seven years after being told his battle for life was over. But what a fight he put up – and what use he made of every precious minute...
‘Ruth and my children are my life’
IWAS expecting it to be sad, possibly even bleak. But the four hours I spent with Simon Fitzmaurice and his family were among the most life-affirming I’ve ever experienced. It’s almost four years to the day since I met Simon at his house in Greystones, Co Wicklow, and my outstanding memory of that afternoon is the fierce love and positivity that permeated throughout the home he shared with his wife, Ruth, and their five children.
I came away almost light-headed and drove back to Dublin with a smile on my face, marvelling at their incredible resolve and cheeriness, and their openness to every nosey question I had asked them.
I wasn’t expecting it to be like that. Simon, an award-winning filmmaker, had motor neurone disease (MND), a degenerative condition that destroys the cells which control voluntary muscles and can affect speaking, walking, breathing, swallowing and general movement.
It’s a terrible affliction with no known cure and by November 2013, Simon had reached the stage where he was confined to a huge, mechanical wheelchair and was unable to move any part of himself apart from his eyes.
At the time he was 39 years old and had five children, ranging from then eight-year-old Jack down to 18-month-old twins, Hunter and Sadie.
There was much laughter and a few tears as the couple told their extraordinary story, regularly interrupted by curious children clamouring up onto their dad’s lap.
It was Ruth who spoke most. Simon was using a laser eye device that was mounted on his wheelchair and the words he typed in with his eye movement were spoken out loud through the computer’s voice.
It took some time for the device to articulate Simon’s thoughts. But his story has also been Ruth’s and she was happy to step in and share it.
She recounted some of the more dramatic moments they had experienced since Simon’s diagnosis, including a stint at a local hospital in 2010 where Simon and his family were strongly advised by a consultant to allow him be taken off a ventilator, the machine that was keeping him alive after a bout of pneumonia.
‘He basically announced that this was the end of the road,’ she explained. ‘That was it, they had done all they could. That he had phoned Simon’s own consultant in Beaumont Hospital who agreed that ventilation for motor neurone disease is not advocated in Ireland.’
The consultant told Simon that day that it was now time for him to make ‘the hard choice’, to agree to come off the ventilator. In other words, to allow himself to die. He told the couple that he knew of only two cases of home ventilation in Ireland... but both patients were extremely wealthy.’
Ruth recalled how she stood in the corner of the room, clutching on to her mother-in-law, Florence.
‘We were in total shock. I knew he could be heading that way but I didn’t think he was at that point already,’ she said. ‘We just cried, holding on to each other.’
That Simon had even been put on mechanical ventilation when he was admitted to the intensive care unit with respiratory failure appeared to have been a fluke.
‘We think they probably did it and then said: “Uh oh, what have we done here?”’ Ruth explained. ‘Then they were stuck with him in the ICU.’
Despite the consultant’s stark and very clear recommendation, Simon refused to grant permission to take him off the machine that was keeping him alive.
‘Simon’s family very much think for themselves, and Simon in particular is a very strong character,’ said Ruth. ‘He wouldn’t be fazed by being told what to do by a doctor, he would question things and say: “Hang on a second.”
‘The consultant told us if he stayed on the ventilator that he wouldn’t get out of the hospital. With MND it’s like, “where do you think this is going? You’re only going to get worse. Why would you choose to ventilate?” So that’s when we decided to fight.’
It took four months, dozens of meetings and exhausting rounds of tense negotiations but finally a care plan was put in place and Simon returned to his home in Greystones in March 2011.
By this stage the disease had left him in a wheelchair, with limited movement and requiring 24-hour nursing care. But shortly after arriving home, the couple made another decision that this time even had many of those closest to them scratching their heads.
Simon and Ruth, who already had three young children, decided to have another baby.
‘Everyone thought we were a bit mad,’ laughed Ruth. ‘But we felt in the face of death and with everything that had happened, well, kids are the ultimate opposite of all that, they’re life-affirming.’
Their lives were certainly affirmed when 20 weeks into Ruth’s pregnancy they discovered she was expecting twins. Their youngest son and daughter, Hunter and Sadie, were born in April 2012.
Daily life for the Fitzmaurices was consumed with taking care of their five children: Jack, now 12, Raife, 10, Arden, eight, and the twins, now five. There was also Simon’s condition, which required several full-time nurses, a ventilator to allow him to breathe and he was fed through a peg tube.
But his mind continued to work constantly. A writer from the age of 14, Simon became a multi-award winning film-maker. His short film, The Sound Of People, was shown at the prestigious Sundance Film Festival in the US just months before his diagnosis in the summer of 2008.
At the time I interviewed him in 2013 he had just completed, despite his illness, a script for My Name Is Emily, which he explained was a feature-length movie ‘about a 16year-old girl and her quest to free her father from a psychiatric institution, helped by the boy who loves her’.
He began writing it with his hands and finished it by typing with his eyes, using his high-tech laser eye device that is connected to an onscreen keyboard.
Finance for the movie was raised through a crowd-funding campaign in which film luminaries such as Alan Rickman, Colin Farrell, Sam Neil, Jim Sheridan and Lenny Abrahamson all lent their support. Directed by Simon from his chair, it was shot in 2015 and the following year he received the Lifetime Achievement Award at London Screenwriter’s Festival. It was also nominated for eight IFTA awards.
It was an extraordinary challenge to set themselves. But one, Ruth said, that was helping them keep their spirits up through some extraordinarily difficult times.
Simon had also just finished the first draft of his memoir, It’s Not Dark Yet, which has since been adapted into a documentary, narrated by Colin Farrell, and was released earlier this month.
‘It has been quite startling to watch,’ Ruth said of her husband’s writing. ‘Everything he says now is pretty much profound. It’s all condensed into this amazing creativity.’
Ruth has also since written her own book, I Found my Tribe, chronicling her experiences over the last few years and how she has used swimming in the sea with a small group of friends to cope. It was released a couple of months ago to rave reviews and has been optioned as a movie script.
Although they had been handed down a cruelly unfair twist of fate, there was no hint of self-pity in their kitchen that day. I noted how dozens of family photos lined the walls of the hallway and kitchen. Many were recent, showing the twins as small babies in the arms of various family members.
Others were older, from before Simon was diagnosed. They showed an extremely handsome, dark-haired man with bright blue eyes and a broad smile. One wedding photo in the hallway was particularly lovely.
‘I want to live, I know it’s worth the cost’
‘Ah yes,’ Ruth grinned. ‘We call that one the money shot.’
The couple first met while in college but didn’t start going out together until several years later, after bumping into each other a couple of times. They were married in 2004 and moved to the northeast of the country.
‘We lived in a cottage in the middle of nowhere,’ says Ruth. ‘We ditched in the day jobs, me to do my writing, Simon to do his films, to have children and a big garden. It was all going great. And then Simon got MND.’ ‘I ruined it,’ Simon interrupted. ‘It wasn’t your fault,’ Ruth replied gently. ‘You didn’t ask to get MND.’
Ruth was pregnant with their third son when Simon travelled to the Sundance Festival over Christmas 2007 to show his acclaimed short film. While there, he noticed he had a pain in his foot.
‘There was nothing before that,’ says Ruth. ‘If anything, he was the kind of guy, when everyone else was struck down with a cold or something, he would be fine, full of energy. He lived life to the max: that was Simon, always.
‘His career was just starting out, the festival was a real wow moment, it was really going somewhere and he won these awards, then it all happened at once, it was crazy.
‘When he came home with his sore foot I had the typical wifey reaction; “Oh you’re being a hypochondriac. It’s probably the clutch in your car, it’s quite stiff, or the fancy trainers that you’re wearing that aren’t very practical.”
‘I didn’t think much of it; we were very busy at the time, we had two little boys and another on the way. My dad is a GP and he sent him to a neurologist when it got a little worse, when he was limping with it.’ In June 2008, the test results all finally came back.
‘I was around four months pregnant,’ says Ruth. ‘My dad drove us up that day, he was possibly waiting for bad news. I remember I was in the waiting room, Simon had gone into the doctor on his own. My dad had come in with mud all over his shoes and I was giggling at him dropping clumps all over the carpet.
‘I was kind of in my own world, then Simon came out and he said: “You better come in here.”
‘We went in and the doctor told us he had MND. Like anyone else, I’d heard of Stephen Hawking,’ she said of the theoretical physicist who was diagnosed with MND when he was 21, given two years to live but is now 75, ‘but I didn’t really know anything more than that about it.’
The neurologist said Simon had three to four years to live but the prognosis did not include being on a ventilator.
‘Most people with MND die with respiratory failure,’ Simon explained. ‘A ventilator enables me to breathe, because my muscles lack the strength to do so.’
Over the next two years, Simon lost the use of his legs and arms. In the meantime, the family moved to Greystones, where Simon grew up and where his family still lives.
‘The progression either starts in your limbs or your voice and your lungs,’ Ruth explained. ‘Simon’s was limb onset, his legs and arms went first. Then once your diaphragm goes you can’t breathe any more. That’s usually the end of the road for most people because in Ireland they don’t advocate ventilation.’
After a bout of pneumonia in 2010 and that difficult conversation with a consultant, a care package was put in place by the HSE so that Simon could stay home.
‘We have a nurse 24 hours, one during the day and a night nurse who sits in the study,’ Ruth said. ‘We have a night monitor hooked up so they’re listening in all night as we sleep, which is obviously a strange way for a couple to live but you do adapt. We have a carer for about nine hours a day because it takes two people to get him up and all of that.
‘I’ve no idea how much it costs. The HSE provide some of it, we provide some and our health insurance provides some. It’s a huge operation to keep him going.’
Ruth also explained that some MND patients do not want ventilation, but it was the right route for her husband.
‘Simon will probably never reach that point, he just loves being alive and wants to be with us, and that’s his choice.’
Over those first 12 months they had to get used to the new regime of having 24-hour nursing care in their home and the birth of the twins, who were conceived naturally.
‘Yes,’ laughed Ruth. ‘As Simon’s dad has said, Simon’s equipment still works! The kids keep us in the moment all the time when this is going on around us,’ she added. ‘It gives us a focus and a motivation.’
At this point Simon interrupted, saying simply in his American accented computer voice: ‘Best decision ever.’
‘For both our families,’ agreed Ruth. ‘When you’re in the hospital everyone goes into this mode of death approaching, everyone is carrying it. Suddenly these babies came along, this life-affirming thing happened. Everyone was bowled over by it and it became this beacon of hope.’
It seemed the Fitzmaurices were determined to make the best of the hand they had been dealt.
‘MND is a part of me now,’ Simon said. ‘It impacts every part of my life and the lives of my family. You live with MND, you don’t fight it. You create a new normality and you build a life.
‘The biggest challenge over the last five years is that MND constantly changes the condition of your life. You are building a normality on shifting sands. So adapting becomes part of your existence.
‘In the first years, it is mourning each loss, not adapting. But we have got better at living this life. Allowing room to enjoy, to be happy.’
His relationship with each of his children also had to change as he grew weaker. Some, like the eldest Jack, remembered how he was before, while the younger ones had never known him to be any different.
‘Simon is really good at adapting,’ said Ruth. ‘As each new little person comes along, it gets harder to connect with them. With the others he had more facial movement, he could interact with them.
‘But he still found a way. Sadie will sit on his lap and he puts on this lovely guitar music and puts up photos on his computer screen. She sits there quite happily and will chat to his face and give him a kiss. He finds a way in, he never gives up on that.’
The family, Ruth said, did not dwell on his prognosis.
‘We don’t look too far into the future,’ she explained. ‘Of course, sometimes you can’t help it, but in general I find it pointless. We live very much in the now.
‘I’ve just had so many times when the doctors have said: “This is the end of the road,” and it hasn’t been. There have been so many times that you begin to not believe in statistics. This is what it is, just let’s go with it.’
‘Simon is at what you would term end-stage now,’ said Ruth. ‘The only thing left that really move are his eyes — and whether or not his eyes will be affected is debatable.
‘And there’s always a danger of chest infection with the ventilator. There have been a few bad chest infections and we thought he wasn’t going to make it through, but he has.’
The day after our interview, at the launch of his film funding campaign, Simon told the gathered crowd how, for as long as he could, he would cling on to the life he had been given.
‘I want to live,’ he said. ‘Ruth and my five children are my life. I worry all the time about the effects of my MND on them... I don’t know the extent of the cost, I simply know it’s worth it. I’m in love with this life and it’s worth every hardship to me.’
Simon died on Thursday. He was just 43 years old.
I didn’t know he had taken a turn for the worse in recent weeks. Hearing the news yesterday morning that he had died, I was surprised at how shocked I was. After all, there is rarely a long-term outcome when it comes to MND.
But there was such vitality in the room that day when I met Simon and Ruth and their house was so busy and welcoming, it didn’t feel like the home of a very sick man.
In the intervening years it seemed like he was still as busy as ever, with his writing and the recent documentary.
At least there is that, his finished works. His legacy to prove just how good he was. And the love that he had and the love he was shown.