Award-Winning Filmmaker Opens Up About Battle with ALS

family
August 02, 2017

Simon Fitzmaurice, an award-winning Irish filmmaker, has story that should inspire us all to persevere in the face of adversity. Fitzmaurice was 33 years old when doctors told him he had A.L.S. The degenerative neurological disorder was supposed to give him only four years to live, they said.

Even more heartbreaking, his wife, Ruth, was pregnant with their third child.

“Fitzmaurice refused to bow down to despair,” says People Magazine, who did an exclusive interview with him.

Now, nine years later, Simon and Ruth have five children, and he’s refused to stop fighting.

Fitzmaurice’s memoir, “It’s Not Yet Dark,” was released yesterday. It traces his journey from diagnosis to figuring out to continue his life. A documentary narrated by fellow Irishman Farrell, which also highlights Fitzmaurice’s journey, opens on Friday.

Farrell calls Fitzmaurice’s story “A beautiful love story… Survival stories are not about surviving, they’re inherently about what makes a survivor push through. A desire to remain in the light of all creation, even as a darkening is taking place. A darkening which happens to us all.”

Fitzmaurice shared his point-of-view with People via an eye-gaze computer because he’s no longer able to speak. However, Fitzmaurice has continued to direct movies, including the award-winning “My Name is Emily,” refusing to let A.L.S take away his identity.

People spoke to him about his relationship with his family, and why he continues to fight to be with them.

“I’m in love with this life, and it’s worth every hardship to me,” says Fitzmaurice.

However, that doesn’t mean things are easy for his family. He detailed the list of inconveniences that come with living with him.

“I have noisy equipment, ventilators, and beds that wheeze and whistle all day and night. And strangers come into our family home, nurses to help me live this life. They quickly move from strangers to familiar faces, but it is an unusual family environment.”

He admits that this fact sometimes makes him worry about his impact on his family. He often contemplates the harsh realities he and his A.L.S. bring into his children’s lives. That’s what makes him so grateful for the people he has in his life.

“It takes a lot of effort to facilitate my being alive. People are amazing. I simply know that it’s worth it to me. I value my life. I value being alive. And I just hope I give back to everyone to make all the effort worthwhile.”
It was his wife who motivated Fitzmaurice to write his memoir. After his diagnosis, she asked him to write a letter to each of their children to explain the situation to them, relating his fondest memories of each of them and describing how ALS had changed his life.

“Something they would have to keep when I die,” added Fitzmaurice.

But he couldn’t do it. Every time he’d start a letter, he’d be so overcome by the idea of saying goodbye to his young children, that he’d dissolve into tears.

“I didn’t want to write the letters and yet felt so guilty for failing to write them,” shared Fitzmaurice. “I was afraid of writing a book because I was scared of touching again the pain of the previous years. But nothing frightened me more than those letters, so I started to write. The book quickly became a comfort to me. Every morning I would write a little, always busy with my film, and it became a time of quiet, comforting reflection. I went back, and it was okay. It was a journey.”

That doesn’t mean he didn’t write the letters to his beloved children. Instead, the book became the letters.

“But above all, for me, my book is a letter to each of my children,” he told People.

Fitzmaurice's story comes at a time when people are questioning what quality of life is necessary for a person to be worth living. In the case of Charlie Gard, the U.K. courts decided his life wasn't worth living because of he'd probably never be "normal." But as Fitzmaurice says, he loves life anyways. 

Another filmmaker, Sam Shepherd, passed away last week from A.L.S. He also had an amazing life despite his A.L.S., but he got his later in life. 

Next: Charlie Gard and The 'Right to Die' Epidemic Jul 11, 2017