For some filmmakers, Sundance is a life-changing experience — for Simon Fitzmaurice, the tragedy is that it was. A strapping, kind-hearted Irish lad who grew into an athletic build that seemed to belie his artistic spirit, he was 34 when Sundance selected his short, “The Sound of People,” for the fest’s 2007 edition. Reluctantly leaving his pregnant wife at home, Simon followed his dreams to the mountains of Utah. It was there, as Simon walked down Park City’s picturesque main drag, visions of a career behind the camera projecting against the walls of his imagination, that he first noticed the pain that would signal his diagnosis with ALS.
In time, Simon would find a way to rationalize why his symptoms kicked in at the height of his happiness. In his memoir, which he wrote with the help of a system that tracked his pupils’ movement along a digital keyboard, Simon observed that it was as if he had “been holding my breath for years, and suddenly let go.” Listening to the poetry and pathos with which Colin Farrell narrates “It’s Not Yet Dark” (the actor reading from Simon’s memoir of the same name), it’s tempting to take the man at his word. But ALS is never so sentimental; motor neuron diseases don’t have any empathy for their victims. They destroy, they divide, they reduce, and ultimately they kill.
But they also provide those suffering with a morbidly urgent opportunity to slow things down and see life from a new perspective. To borrow one of the less subtle visual metaphors deployed by director Frankie Fenton, we’re all aboard a train that’s speeding toward the darkness of a distant tunnel, but few of us can see far enough down the tracks to know how little time left we have to enjoy the view.
An inspirational documentary that appeals to cinephiles in much the same way that “Gleason” appeals to sports fans (though both are rooted in a universal empathy), “It’s Not Yet Dark” chronicles every step of Simon’s merciless decline, the film’s swift pace conveying the preciousness of every passing moment. Not that a desire to be in those moments ever seemed to stop Simon from recording them, as the lifelong film obsessive — perhaps determined to leave his devoted wife with evidence of their life together — shoots home video of himself and his endlessly expanding family until he loses the hand strength required to hold a camera. That’s where Fenton comes in, organizing Simon’s footage, filling it out with some testimonial interviews, and being there to witness the improbable next phase of his subject’s time on Earth.
When the film begins, Simon can’t move, can’t speak, can’t swallow, can’t even breathe without assistance. “But,” he tells us through Farrell’s voice, “I can still feel. Everything.” Unbelievably, he can also direct. Unable to talk but unencumbered by the stresses of building a career, Simon sets about making his first feature, a process that Fenton shoehorns into the film’s last 30 minutes after a long middle section in which the Fitzmaurice family’s many final times — the last time Simon can run after his kids, the last time he can dance, the last time he can travel — are presented in an emotionally numbing parade. It’s unfathomably wistful.
Still, that matter-of-factness is very refreshing. It’s a short movie that is often too instructive, posing achingly difficult rhetorical questions around what it means to be a man when so much is taken away. Fenton, however understandably, is too drawn to the raw power of Simon’s story to let viewers work their own way through its darkness.
On the other hand, it’s the questions that Fenton can’t answer — maybe even the questions he doesn’t mean to ask — that make “It’s Not Yet Dark” such an illuminating experience. How do those of us fortunate enough not to be living with a terminal illness (or loving someone who is) learn how to stop taking life for granted? Simon says that “The hardest thing about living with MND is the distance it puts between me and the people I love,” but how do the rest of us learn how to measure the distance that’s already there? There are any number of movies about how people need to stop and smell the roses, but they don’t answer whether it’s really possible for a film to inspire that kind of change. As Don Hertzfeldt so mordantly suggested in his brilliant “World of Tomorrow,” is the great tragedy of being alive that none of us will ever be able to fully appreciate it?
Who the hell knows? But when Simon declares “I love being alive,” there’s no way you won’t believe him.
“It’s Not Yet Dark” premieres in the World Doc Competition at the 2017 Sundance Film Festival. “My Name Is Emily,” Simon Fitzmaurice’s directorial feature debut, opens in theaters on February 19th.