What can I say about Simon Fitzmaurice’s remarkable memoir It’s Not Yet Dark except that it stunned me, saddened me, excited me, made me laugh and cry, took me to dark places and then shined lights in places I didn’t even know existed.

It stayed with me, haunted me. I finished it months ago and yet I can still feel it inside of me, can feel Fitzmaurice’s words in my head.

It touched me so deeply that I was unable to write about it. I could only reread passages, roll them over on my tongue, think about them, wonder about them. And I suppose that is the best way to read a book, to hold it so close and so dear that you can’t write about it because writing is a way of letting go and sometimes, you just aren’t willing to do that.

What is so remarkable about this book (well, everything is remarkable about this book) is the humor, which is unexpected, which creeps up between Fitzmaurice’s words, and each time it’s a surprise, and a wonder.

Let me explain why. Fitzmaurice, an award-winning filmmaker, found out that he had ALS (Lou Gehrig’s disease) in 2008. He was married, the father of three children, and had just received the news that his film The Sound of People had been selected for the Sundance Film Festival. That night, as he walked home, he noticed his foot slapping the pavement in an odd way. That was the beginning of the end, though you could also say that that was the beginning of the beginning.

Fitzmaurice wrote It’s Not Yet Dark after ALS had flattened him out, taken away almost everything he had: his mobility, his ability to taste or smell or eat food, to use his hands or feet. He wrote the entire book, letter by letter, via an eye-gaze computer.

Yet, you’d never guess. Fitzmaurice’s prose is beautifully stark, beautifully deep. He moves from past to present, chronicling his early years with his wife, his early years with his ALS diagnosis. In the Chapter Running, he writes:

My younger sister Kate gets married in March. It’s the most beautiful wedding I’ve ever attended. I wear a brace under my sock to keep my foot upright. On the second day of the festivities I get a text to say my film, “The Sound of People,” has won the Belfast Film Festival. 

I dance for the last time.

The story is heartbreaking, especially when Fitzmaurice tries a variety of alternative therapies to heal himself of ALS. He sinks into despair; he almost gives up. In the chapter My Country, where he’s hospitalized and eventually put on a ventilator, he writes:

What have I become? To my children? I am still their father, always their father. But so different from everyone else. Everyone is different but some are more different than others. I feel for them, being in places where everybody’s body works. Rooms full of people whose bodies work.

Yet mostly, It’s Not Yet Dark is a story of survival, of perseverance, of choosing to life and love no matter the odds. After Fitzmaurice returns home from the hospital, he begins to write another film via the eye-gaze computer, and he fathers two more children (twins).

My willy works, he writes. It’s that simple.

The day I found out the ALS didn’t affect my penis was a red-letter day.

Fitzmaurice died on Oct. 26, 2017. I was lucky enough to conduct a short interview with him a few months before he died, which I’ll run in a follow-up post early next week. My one regret is that I wasn’t able to print this review before he passed away. Yet I think Fitzmaurice would understand. In the ending chapters of It’s Not Dark he writes:

I do not eat or drink or walk or talk the way you do. I don’t breathe without a machine helping me day and night. I cannot move my arms or legs. And yet. I’m still a man.

I’ve lost so much. And yet. I’m still here.

I feel everything. The slightest feather touch anywhere on my body. And my heart is alive. To meaning. To value. To love. Which is all it’s ever been about.

I highly, highly, highly recommend It’s Not Yet Dark. It’s a gut-wrenching, joyful, liberating and life-altering read, yes, but mostly it’s a remarkable book about a remarkable man.

The It’s Not Yet Dark documentary is also available on Netflix, or you check out the trailer on Youtube.