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Irish Filmmaker Battling A.LS. Calls Poignant New Memoir ‘A Letter to Each of My Children’

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Courtesy Simon Fitzmaurice

Award-winning filmmaker Simon Fitzmaurice was just 33 when he was diagnosed with A.L.S. in 2008 — and told he had no more than four years to live.

His wife, Ruth, was pregnant with their third child at the time, but Fitzmaurice refused to bow down to despair.

In his memoir “It’s Not Yet Dark,” which was released in the U.S. on Tuesday, the Irishman traces his journey from the tragic diagnosis (A.L.S. is a progressive neurological disorder that is usually fatal) to reclaiming his life and work as film director. Fellow countryman Colin Farrell narrated the documentary of the same name, which highlights Fitzmaurice’s inspirational story and opens in theaters on Friday.

“A beautiful love story — in its essence that’s what this is,” Farrell said in a blurb for the book. “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.”

Courtesy Simon Fitzmaurice

In an exclusive interview with PEOPLE, Fitzmaurice shared details about his memoir and how he stayed in the light: through his work and his family, which now includes five children. Now confined to a wheelchair, he wrote his responses with an eye-gaze computer. This is the same device that allowed him to direct “My Name Is Emily,” which released in the U.S. in February and won best cinematography in an Irish feature at the Galway Film Fleadh in 2015.

What is the biggest challenge you face while directing a film with your condition?

The biggest challenge in filmmaking that comes with A.L.S. is time. When I’m on set, there is a short delay while I type up my thoughts. I overcome this by preparing as much as possible in advance of the shoot. Preparation is key. I spend a very long time storyboarding, thus reducing unnecessary discussions on set. Storyboarding each shot, so that everyone involved knows exactly what we’re doing all the time. Pre-production is seriously intense.

When it came to filming, it was like any film shoot, it is a frenzy of creativity and very long days. I barely saw my family for the six weeks. I would come in from a twelve to fourteen hour day and have to prepare for the following day. It is its own momentum. My sister, Ruth, was my rock. Every day she was there round the clock, standing by my shoulder…

A.L.S. is defined by loss. By what it takes away. But this was me taking something back. I returned to work. And that was a great feeling. To be back on set. Because it’s the work that I love.

Courtesy Simon Fitzmaurice

Why did “My Name is Emily” resonate with so many viewers? 

The story of “My Name is Emily” lived inside me for five years. Emily fascinated me. Because I believe in redemption. I believe in the power to take what life throws at you and to slowly come back, to take all you have and not be crushed to death by sadness and loss. This is a story of redemption. People are crushed every day by sadness and loss. This is not an attempt to say otherwise. This is just a story where that doesn’t happen.

There is a certain sickness to always wanting a happy ending, [as] if the desire for it is driven by a fear of seeing things as they are. Popular media is rife with that desire. But there is another impulse, much deeper than fear. The will to live. To live with the sadness, loss and love that is life. To navigate it. To not give up. That is Emily’s story.

Courtesy Simon Fitzmaurice.

What inspires you as a filmmaker?

My writing usually comes from a key phrase or thought. Very often it will become the beginning of a story. In this case it was: Life happens quickly, like mountains in the background. And you wake up one day. And you don’t know how you got there. I’m obsessed with the act of waking up. As a sudden, new awareness of yourself. A sudden new perspective of your existence that moments before didn’t exist. It’s a fascinating human phenomenon. Fascinating enough to me to weave a story out of it.

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How has your family been impacted since your diagnosis?

Living with me isn’t easy. 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. And all because of me. And all because of A.L.S. I worry all the time about the effect that I, and A.L.S., have on my loved ones. The price of me being alive. 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. I’m in love with this life, and it’s worth every hardship to me.

What do you want your children to take away from your memoir?

My wife asked me to write a letter to each of our children, a personal letter to each, saying how I felt about them, memories of our time together, an explanation [of] how A.L.S. had changed things. Something they would have to keep when I die. It was the most difficult thing anyone had ever asked me to do. I tried for years. But every time I started a letter I was immediately overcome by the act of saying goodbye for the last time, and I would get no more than a few lines before my screen dissolved into tears.

I didn’t want to write the letters and yet felt so guilty for failing to write them. 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. But above all, for me my book is a letter to each of my children.

What would you like your readers to know?

To quote my book:

“Our lives are not the legacy we leave behind, or the value of the work that we do. Our lives happen in between the deeds and ideas that define us. Each of us feel it, the mystery, the strangeness of life on earth. Of life and death. We feel it when we travel, we feel it when we stay at home. We feel it when a loved one dies or when a loved one is born. I’m sure we all crave more certainty than we have but that is not human life. That is the ticking of a clock. Some days you can just see clearly. Our meaning, what we value, is the most private part of us. It may just define us. It shapes everything we do, everything we say, everything we feel, everything we dream. It’s hidden, from others, from ourselves. There is no mirror to show us what we value. So often it is only revealed to us after the fact, in the long movie reel of memory. And when we see it, our heart stops, aching with recognition. It is a beautiful thing to see yourself.”