I‘d like to use this issue’s column to pay tribute to writer and director Simon Fitzmaurice, who died on October 27, aged 43. Fitzmaurice was diagnosed with motor neurone disease in 2008, but defied both his prognosis and our idea of what it means to be determined, passionate and resilient.

Simon’s life with motor neurone disease required a motorised wheelchair, a home ventilator and the use of eye-gaze technology to communicate. However, despite all these obstacles, he went on to write and direct the coming-of-age film My Name Is Emily, and a beautiful memoir, It’s Not Yet Dark, which was adapted into a documentary by director Frankie Fenton. The film highlighted Fitzmaurice’s unwavering love of life, as well as his adoration for his wife, Ruth, and their five children.

I interviewed him in 2016 about My Name Is Emily over email. He wrote thoughtfully about his creative process, and how his life with MND had made him even more empathetic and determined to represent different facets of the human experience.

“I’m obsessed with the notion of the artist as outsider,” Simon explained. “It was certainly my experience. Of course there are many other outsiders, as I very quickly discovered when I was labelled disabled. There are many different margins to society, all of which provide a good vantage point from which to see. I wrote the script to direct it. MND had nothing to do with it; I am not trying to prove anything. I just keep on going, working any way I can, after MND. I’m very determined – it’s just the way I am. Actually, I am trying to prove something. I remember thinking, I must do this to show my children to never give up. A cliché but true. So MND made me even more determined to direct this film.”

While writing my article about My Name Is Emily, I also spoke to the film’s star, Evanna Lynch, and musician James Vincent McMorrow, who wrote a song for it. Both were effusive and awe-struck in their praise for Fitzmaurice.

“Working with Simon was life-changing, really,” Lynch commented. “He’s the most passionate person you’ll ever meet. He loves life. I think because he’s been pushed so close to death and has had medical people telling him that he should let go, he’s really struggled to get his voice out there and to live more fully. It was amazing to be around that energy and that zest for life.”

McMorrow was similarly inspired.

“He is a hero, and I truly mean that,” he said. “I feel that he and this movie should be lauded from the rooftops. The fact that it not only exists, but is a beautiful piece of storytelling is amazing. He could wake up every morning and sit in his house. He’s been through so much, is going through so much. And yet this is what he chooses to do, to write books and direct movies.”

I also spoke to Simon’s wife Ruth Fitzmaurice just a few weeks ago to celebrate the theatrical release of It’s Not Yet Dark. Simon was already ill and in hospital when the film premiered, which made its intimate exploration of Simon’s life all the more poignant.

“The film is such a celebration of everything he did and has done,” said Ruth, “and so only good things can come out of that.”

Fitzmaurice will be greatly missed; he was an incomparable creative force who inspired everyone who knew him – or simply knew of him – to appreciate life. His death is a tragedy, and yet I’m so grateful that My Name Is Emily, and both the book and film of It’s Not Yet Dark, provide a fitting legacy. They remind people of a man whose innovation, creativity and love of life inspired us all.