“IT’S NOT YET DARK”— Living with ALS

“It’s Not Yet Dark”

Living With ALS

Amos Lassen

Colin Farrell narrates “It’s Not  Yet Dark”, the story of Simon Fitzmaurice, a talented young Irish filmmaker with ALS (MND), as he starts directing his first feature film “My Name is Emily” through the use of his eyes and eye gaze technology. Farrell reads the director’s own words from his memoir. Because Fitzmaurice is a writer at heart, the film has a poignancy and truth. Director Frankie Fenton did not have to rely on someone else’s words. Fenton beautifully captures Simon’s saga, which isn’t always easy with human inspirational stories like this, but he has done so.

What makes “its Not Yet Dark” so powerful is the honesty of Fitzmaurice and those he loves. His wife, Ruth is such an honest, well-spoken, interesting woman. Many people will walk out of the film praising Simon, but this is Ruth’s story as well. And this is a story we can all relate to. When Simon says “I dance for the last time,” remembering the moments before he lost control of his muscles, that’s something that connects with the heart. I do not think that we can imagine hugging someone for the last time or telling your partner that you love her/him for the last time. Neither can we imagine being trapped in a body that feels everything and retains all the same mental capacity but we are unable to express any of it.

This is NOT a tragedy. Fenton and Fitzmaurice look at the inspirational aspect of the material completely and unapologetically. It is, however, painful to watch and uncomfortably intimate at times and it seems to me that this is by design. The film could have been very dark as we are taken us into the mind and body of a young Irish filmmaker who wakes each morning closer to total paralysis.

Farrell narrates in the first person Speaking in the first person as he tells of the Fitzmaurice’s struggles to pursue his career while losing his body to the neurodegenerative disease of A.L.S., or amyotrophic lateral sclerosis. I found the rapidity of Fitzmaurice’s decline to be shocking.. Once his diagnosis becomes clear, when he is 34, doctors predict Mr. Fitzmaurice will live three to four years, but he flies by that (he is now 42) and remains amazingly productive, working painstakingly on his first feature film.

By the time shooting begins on that film, Mr. Fitzmaurice is using a ventilator to breathe. He directs the actors through his only means of communication: eye-gaze technology. His computer decodes his gaze and speaks for him in a robotic voice, which his wife refers to as “American.”

Fitzmaurice has and shows a powerful will to live, and he and his wife make the most of it so every day is memorable for their five children who steer the film, and their lives, from what might be unrelenting sadness toward inspiration.

Just as Fitzmaurice was at the cusp of his filmmaking career, his body turned on him. He developed a foot impediment, which, though exasperating, did not seem to be life-threatening. Yet slowly his physical condition regresses and subsequent medical testing concludes that he is stricken with the horrible and fatal illness of ALS.

Never losing a fighting-Irish spirit, nor his sense of humor, Fitzmaurice is buoyed and fortified by his loving wife and their kids as well as his parents, siblings and friends. This is a story of uncommon emotional fortitude, yet our filmmaker never wallows in self-pity. After all, he has much to live for: his family, his writing and his dream of filmmaking.

Even when he is confined to a wheelchair with his body kept alive by an array of tubes, Fitzmaurice cannot move, but he still communicates, writes and makes jokes. He expresses himself with the help of a remarkable computer program; instead of finger-tapping on a keyboard, his eye-gaze stimulates the keys. Immobile and dependent totally on others to maintain his daily physical functions, Fitzmaurice perseveres. He works on a novel, which as goodbye letters to each of his children, and continues writing a screenplay. His daily regimen is grueling his health is constantly declining health, he never leaves his ultimate dream of directing films.

Filmmaker Frankie Fenton begins with childhood photos and home-movie-style snippets and retracing Fitzmaurice from there. Fitzmaurice grows into a dashing, charismatic young man and is popular with the ladies and a friend to many, he seemed to be headed toward a charmed life. His short film was selected for the 2008 Sundance Film Festival, and he seemed to be on the fast track to making filmmaking his career. But, the disease ultimately robs him of his body.

Under Fenton’s tender direction, the technical team shines and composer Stephen Rennicks’ baleful but lively score resonates with the subject’s inner strength. Narrator Farrell’s warm voice captures Fitzmaurice’s life-affirming gusto.

The once-vigorous Fitzmaurice now cannot breathe, swallow or speak without mechanical aid. In archival footage (mostly home movies), we see him serially lose physical abilities; the last time he walked, ran, or danced all having been captured on video.

Asking himself what the “best part of living with MND is,” he says, simply, “It’s the ‘living’ part.” Fitzmaurice declined doctors’ offers to “pull the plug” as his physical life narrowed to a degree that would be unbearable to many others. “I love being alive,” he insists. Technology has made it possible for him to remain artistically active — speaking, writing and directing via eye-gaze-operated computer programs — and his devoted family has kept his life spiritually fulfilling. Much of “It’s Not Yet Dark ” is a love story, portraying a marriage so perfectly matched that overwhelming hardship could never seem to seriously put it in danger (though Ruth admits it was a boon when nursing assistance let her be less of a caregiver and more of a spouse again).

The climax comes with Simon’s against-all-odds completion of the well-received drama “Emily,” a task he manages because of extensive advance storyboarding and a supportive crew. That movie is a bittersweet celebration of life that “doesn’t shrink from sweeping poetical gestures.”

Leave a Reply