I was lucky enough to snag an interview with Simon Fitzmaurice, author of the the beautifully written memoir It‘s Not Yet Dark and filmmaker of The Sound of People and My Name is Emily, and my only regret is that I wasn’t able to publish it before he died in October of last year. (You can read the review here.)

Fitzmaurice was an award-winning filmmaker who was diagnosed with ALS early in his life. After he lost mobility of his arms and legs, lost his sense of touch and ability to eat, he chose to be put on a ventilator. From there he continued to write films, a book and father two more children (twins).

He was a remarkable man who touched me in more ways that I can say. I feel blessed that I was able to correspond with him and learn more about his life, his writing process and his hopes for the future.

P.S. Fitzmaurice was an Irish writer and used the British spelling of many words. I’ve kept these as is, to preserve the integrity of his voice.

Simon Fitzmaurice interview (August, 2017)

Q: Why did you feel compelled to write “It’s Not Yet Dark?” What drove you through the tough sections? And, ultimately, what kept you going through to the ending and the beautiful yet simple scene of attending the opera with your wife, along with the last lines, “In the darkness, it’s just the music and me.” (And isn’t it always, in a sense, just the music and ourselves?)

A: The idea of this book began with my desire to say something to my children, to tell them my journey, to give them hope and speak about the love that I feel, and that is what drove me to complete it. I have always written, so once the words started to flow I simply followed them through until I felt them come to their natural end, which in this case was the moment at the opera, a moment that encompasses for me a pure example of being caught up in the act of living.

Q: “It’s Not Yet Dark,” a film by the same name, is slated to be released. How does the book differ from the film? And which do you prefer, which do you believe best captures your real voice?

A: The film follows the narration of my book, and the voiceover is done by the wonderful Colin Farrell, who a few of my family members said sounded scarily like me. The film captures the essence of the book perfectly.

Q: You mention in the book that film is your true medium, that instead of remembering your favorite book, your favorite films that come to mind. Yet you’ve written a very personable and intimate book. I’m wondering if, during the writing, you thought in words or images?

A: Yes that’s true I do think of favourite films, and favourite images from films often come into my mind. I think that in writing my words and images are often bound up together. When I think about what I am going to write the images are more present, while when I am in the act of writing the images fall away as I get caught up in the words themselves.

Q: You chose to use a ventilator instead of death, which isn’t the usual procedure for ALS patients in Ireland. And yet you fought the doctors, fought the system for this right. Later you mention that your twins, Hunter and Sadie, wouldn’t exist if not for the ventilator. Was it difficult to write these sections? Was the writing therapeutic, did it help you resolve some of the unfairness, the inequality of the system and how you were treated?

A: I felt a resolve from the moment I was asked to turn off the ventilator, a power, a strength in me I never knew I had. Reliving difficult moments in writing is exhausting, but there is also an exhilaration, a true letting go, once it has been written out.

Q: Can we talk about the humor, which creeps through the prose in unexpected times, and unexpected places, such as when you’re smoking a cigarette and say, offhandedly, “Don’t tell my wife.” Did you use humor to lighten the tone of the book? Or did it naturally creep between your words? Or, to put it more bluntly, do you consider yourself a funny guy?

A: Ha yes! I have always made a joke in most situations I have found myself in, whether they be uncomfortable, scary, loving, you name it, since I was young I have naturally used humour as a way to connect with people, even in the saddest of moments, the right words can just make someone smile, can bring you closer.

Q: I appreciate the way you capture your wife, and your family. The scenes are so simple, such as when you’re chasing your sons around the yard in your wheelchair, and yet so filled with love and affection. Was it difficult to write these sections without becoming overly sentimental?

A: I wrote it as I felt it, I brought myself back to those moments and wrote down the thoughts I distinctly remembered having at those times. A lot of those instances are ones that are crystallized in my memory, all of my senses were on high alert, feeling so pressured by time as I did then.

Q: What were the most difficult sections to write? And why?

A: When I think and write about my children I cry, they are always the most difficult to write about.

Q: Your writing style is so very intimate. There’s little filter or distance between yourself and the reader. It’s as if we are inside your head, seeing the world from your perspective. Did you ever feel naked or exposed, writing in this way?

A: When I write I don’t think of the reader, or if I do it’s the reader as myself. I simply try to recreate a moment and my thoughts that were in it, in a way that I hope will do the moment justice.

Q: One of the things that makes “It’s Not Yet Dark” so powerful is your fearlessness and how you don’t hesitate to show yourself as vulnerable. Have you always been this way or has having ALS helped (forced?) you become more open, more willing to show yourself as you really all, without all the filters and trappings we hide behind throughout our lives?

A: I have always questioned myself, reflected on every aspect of myself, it is what drove me to writing in the first place, to face oneself and one’s vulnerability is always something I’ve been fascinated with.

Q: Near the end of the book there’s a section where you say “I’m racing toward a bridge.” Then you change gears and take us back to your past when you’re a teen and first discovering love and your place in the world. This switch is so perfect that it almost hurts. Did you intend this change in direction or is this simply how the book formulated as you wrote?

A: That is my favourite line in the whole book. Yes, that transition is deliberate.

Q: You wrote the book with an eye-gaze computer. Do you think this helped you pare down the excess and write more from a bare-bone perspective? Or, more pointedly, if every word takes more time, does every word therefore become more important, more of a luxury, more loved, in a sense?

A: I have always chosen my words carefully, stripping sentences back and trying to condense my thoughts and ideas into simple forms, a few choice words can say a lot, so I don’t feel I comprised because of the eye-gaze, I think it’s my style of writing anyhow.

Q: Your prose is so lyrical, so poetical, so unflinchingly beautiful and yet so unflinchingly honest. How did you achieve this? Did you repeat certain sentences and phrases over and over in your mind in order to capture the right flow, the right rhythm? Or is this your natural voice, the natural way you perceive the world?

A: Thank you, that is a wonderful compliment to my writing. Fortunately my writing does come very naturally to me, it has always been my freedom, my release, I’ve said before that it was my writing that saved me when I got sick. I don’t worry about the right flow or rhythm, I just allow my thoughts to seep out onto the page.

Q: You write beautifully about unbeautiful subjects: Your own disease and having to give up more and more pieces of yourself: Your mobility, your range of motion, your speech. Did you ever anguish, writing about this? Or did the mere fact of writing, of placing yourself in the role of a narrator, give you the distance to see it less emotionally and more objectively, more as a writer writing about a subject? Or was it always emotional, always personal?

A: Writing is my passion, it fulfils me at the deepest level, it is always emotional, always personal, but it is also powerful, it is my taking something back.

Q: What do you hope for now that the book is finished? What is the one thing you want readers to think/feel/see as they hold your book in their hands?

A: It’s a great thing to see your words in print, to see people moved by your writing, I am already extremely humbled by the reactions I have received to the book. To just add my voice to the art form that I love, that is a powerful and rewarding thing.