An inspirational story of light in the darkness
YOU probably have heard of Simon Fitzmaurice, the filmmaker who was diagnosed at 32 with motor neurone disease and given just four years to live.
He told his story in the bestselling 2015 memoir, also called It’s Not Yet Dark, and this year, his wife Ruth enjoyed huge success with her own memoir, I Found My Tribe, which tells how sea swimming with friends in a cove in Greystones, Co. Wicklow, became the release she needed from the situation life so cruelly brought to her door.
Now director Frankie Fenton has made this documentary based on Simon’s book, fleshing out the writer’s poetic account of his battle to live with family interviews, photographs and home videos.
Narrated with hypnotic grace by Colin Farrell, the story is told in Simon’s own words. Nine years after the diagnosis, he has lost all movement in his arms and legs and no longer can speak except through an eye-gaze computer he con- trols with his pupils and which delivers his words in the sort of dismembered American voice familiar to anyone who ever has heard Stephen Hawking speak.
There is a particular cruelty in the fact that Simon first noticed his condition, in the form of a foot that went ‘floppy’, while he was in Park City, Utah, showing his short movie, The Sound Of People, at the Sundance Film Festival.
When he was given the news about his health, it was a devastating blow. The Fitzmaurices had three young children, and Simon was determined to carry on living to see them grow up.
When he suffered respiratory failure, the doctors wanted to switch off the ventilator and let him die. He and his family had other ideas, and they prevailed.
Miraculously, he went on to father
It’s Not Yet Dark (PG) Verdict: Moving and inspiring
twins, bringing the total number of children to five, and to direct a full-length feature film, My Name Is Emily.
The making of that film takes up perhaps a little too much time of a documentary that is at its best when it concentrates on Simon’s relationship with his family. It is sad to watch his progress from a young, handsome, vibrant man to how he lives today, but the important message is this — he is alive. Along the way, we see how parts of that life are progressively curtailed — a video of his sister’s wedding is, he tells us through Farrell, ‘the last time I danced’.
Yet it is hard not to cheer when, having filmed the last scene of My Name Is Emily, he tells the cast and crew, through the computer: ‘That’s a wrap.’
Simon’s will to persevere, and the astonishing support he gets from Ruth, are inspirational and profoundly moving; I’d be derelict in my duty if I didn’t tell you I frequently found myself in tears.
But, please, don’t be put off — most of those tears were not of sadness, but of joy. This is not a film about disease and illness — it is a film about love, the all-consuming love of a man for his wife and children, and the love of parents for a son, of sisters for a brother, of children for a father, and of a wife for her husband.
Above all, it is a film about the indomitability of the human spirit. In an early scene, Simon is shown reaching the summit of a mountain in the Himalayas. The mountains he has climbed since were even bigger, but he has faced every challenge head on.
His conclusion is a motto we all could do with remembering — ‘it’s not about how long you live, it’s about how you live.’
Moving: Simon Fitzmaurice and his wife Ruth