Motor neurone disease will not stop filmmaker, Simon

WHEN Ruth met Simon Fitzmaurice, she sensed he was special. But they were in college, and he always had a girlfriend. The two didn’t get together until 2000, when they met by chance at a bus-stop.

Eight years later, Ruth was pregnant with the couple’s third child; Simon was heralded as Ireland’s most promising film director; and the couple planned to move into a large country house in Co Louth. Life was perfect.

Then, Simon went to the Sundance Festival for the screening of his second short film. He developed a limp. It didn’t go away, so Simon went through a battery of tests. He was diagnosed with motor neurone disease, and was given three years to live.

“We walked out of there like ghosts,” says Ruth. “We cried at nighttimes, holding onto each other, but you have the kids, so you sleepwalk through the day. A week after the diagnosis, we gave a birthday party for one of the children. You’re in shock, but you get on with it. It’s like it’s happening to someone else.

“If someone is paralysed in an accident, you accept a new normality. But Simon was constantly deteriorating. It was like shifting sands, relentlessly trying to adapt. Simon was limping more. Then he walked with a stick. Then with a walker, and, one day, I heard a big crash and he had fallen, and been unable to get up. I freaked, and said, ‘you have to get a wheelchair.’

“At that point, we went to Australia. Simon had to be lifted onto the plane and we had the two boys and the baby. It was a mad adventure alright, but we stayed for six months. Simon had lost so much, but there was still so much he could do.”

He still had strength in his arms, and could speak when, in 2010, following an infection, he went into respiratory failure. “That was a big shock,” says Ruth. “That’s usually the end.” Simon was determined. He refused to let the team switch off his respirator, and, thanks to the HSE, he lives at home, cared for by nurses and carers.

The couple decided to have another baby. “I did worry that, maybe, it was wrong to bring children into the world when their father is ill,” says Ruth. “But Simon had spent four months in ICU, with no window. We had been travelling in and out, but he hadn’t been in our lives. And it felt right to have another baby. When you have that shroud of death over you, you crave the complete opposite of that.

“It was our way of saying to the world, ‘we haven’t given up. We are still a family and we are going to continue.’ You get tired of that look; that mixture of pity and sadness. We have huge love for each other, and we wanted to make the most of the life that we have.”

Even so, it was a shock when Ruth discovered she was pregnant with twins, Sadie and Hunter. “The first six months were all-consuming. Mum came and slept on the sofa and helped me with the feeds, but pretty soon it got easier. They slept through the night and they entertain each other. They’re wonderful babies. And they’re a distraction from everything else that is going on,” she says.

Does Ruth think ‘why me? Why us?’ “At the beginning. It was like grieving. Now, we accept what we have. There is always something to be glad about. We have five fantastic kids, great families and we still love each other a lot. It’s not the life I thought we would have, but I’m massively proud of Simon. He has done so much in spite of his illness. He keeps me going.”

Simon has been writing a film script, a book, and a few articles, typing with his eyes, on the iris-recognition screen paid for by the Motor Neurone Association. He plans to direct his film, My Name is Emily, but funding is required to pay for facilities for him. The couple are raising money through crowd-funding.

The film, told from the perspective of a teenage girl, celebrates love and life. Simon tells me about it via email.

“I put my own thoughts and feelings into the characters, but I also get lost in their reality, their story. I’m in their head.

“I can’t walk, talk, breathe, eat or drink. So there are two dominant forces in my life that have to take the place of everything I’ve lost. They are love and work. My choice is stark. Live or die. And as I choose to live, I must make the most of what I have. So work is not a choice, it’s a necessity.”

* See: MyNameIsEmilythefilm.com and folllow Simon @SimonsFilm


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