Through a director’s eyes

Happy ending for director with ALS

Can a moviemaker deprived of the ability to speak direct a film through his eyes alone? Elizabeth Palmer has the answer: 

“My Name Is Emily” is a road movie of sorts, the tale of a Irish teenager in foster care who sets out to find her father, a well-known writer who, after a breakdown, has been committed to a psychiatric hospital.

For Simon Fitzmaurice, the movie’s writer and director, truly living -- with everything you’ve got -- is the point. 

Eight years ago, he seemed to have it all. He was a handsome, young husband and father, an adventurer who climbed mountains.

He was also an award-winning writer-director of short films, and had his heart set on making a feature.  

Then, Fitzmaurice was diagnosed with ALS (otherwise known as MND, Lou Gehrig’s disease), a degenerative illness of the nerves and muscles.

In the biographical documentary “It’s Not Yet Dark,” actor Colin Farrell speaks Simon’s words: “I have lost mobility in my limbs. I can no longer speak, swallow or even breathe without artificial help. But I can still feel. Everything.”

Irish filmmaker Simon Fitzmaurice shepherded his passion project, “My Name Is Emily,” despite his diagnosis of ALS, Lou Gehrig’s disease. Monument Releasing

Farrell said, “The doctors suggested in Ireland years ago that he should be taken off the ventilator system and allow peacefully to go at times.  Simon said, you know, not on my watch, kicking and screaming, you know, to not go gentle into that good night. Simon said no, death is not what I want.”

Palmer met Fitzmaurice in his studio in the town where he grew up, south of Dublin. Still passionate about filmmaking, Simon spoke the only way he can, with a computer that tracks his eye movements to spell out his thoughts. 

Palmer asked, “Why did you want to make ‘My Name Is Emily’?”

Evanna Lynch in “My Name Is Emily.” Monument Releasing

“To spend this precious time I have doing something that fulfills me at the deepest level,” he replied. “That echoes in my soul. To manage to do this with MND. To overcome all that that puts in my way, shows me how much it means to me.”

He did it with rock-solid support from family … devoted parents, sisters, his five children, and his wife, Ruth, also a writer, who remained undaunted even after her husband had lost the ability to speak and breathe for himself. 

Palmer asked Ruth, “You decided to have another baby, which turned out to be twins, when you knew Simon was going to be very ill and disabled.  Why did you go ahead and do that?”

“It’s just the way we are,” she replied. “For us it was just a no-brainer just to add some more chaos! Because what else would you do, you know?”

In a house already full of kids, Fitzmaurice says, adding more was the ultimate expression of being alive. 

Farrell laughed: “They’ve got their hands full, man! Ruth and Simon have their hands full. I know it’s been hard. Of course it’s been hard at times. Ruth is an extraordinary woman and Simon is an extraordinary man.”

Fitzmaurice said, “I’m very determined. It’s just the way I am.”

Determined is an understatement.  Once he’d finished the script for “My Name Is Emily,” he decided to direct it, too.

“How advanced was your ALS when you started writing it?” Palmer asked.

“By the time I was finished I was writing it with my eyes,” he said. “I just keep on going, working anyway I can. I’m very determined. It’s just the way I am.”

Determined is an understatement.  Simon decided he’d direct the film as well -- a “mission impossible,” made possible with elaborate storyboarding done in advance, a support director to help relay his vision, and cast and crew dedicated to carrying it out. 

He made it work with elaborate storyboarding done in advance; a support director to help relay his vision; and a willing cast and crew. 

Palmer asked, “What gave you the most joy?”

“From the first day of shooting, I was utterly elated,” Fitzmaurice replied. “To me, directing on set is just thrilling because it requires 100 percent of your focus, and every creative fiber of my being.”

“He is an extraordinary filmmaker,” Farrell said. “He knows exactly what kind of story he wants to tell. His work is imbued with an incredible sense of heart and honesty.”

Ruth added, “Suddenly he went from being the man in the bed in the house to, you know, getting up and out every day. And we all know nobody wants a grumpy husband who’s stuck at home all day. It’s much nicer to have someone who is driven and focused and getting out to work and coming home again.”

As Fitzmaurice described it, “A fire has been lit inside me. Seriously, an energy I didn’t know I had and it has not gone out. It’s been life-changing.”       

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