By Simon Fitzmaurice
Houghton Mifflin Harcourt
2017
176 pages Memoir
As I was reading this heart-warming and heart-breaking
memoir earlier this week, there were 10 children laughing and playing in our
pool. The juxtaposition was jarring but also comforting, because I had the
constant assurance that life goes on, that laughter happens amid disaster, and
that courageous people can prevail. Additionally, because Fitzmaurice has five
children of his own, I knew that he was listening to his children’s play even
as he was writing this memoir of his life and death struggle with ALS.
Fitzmaurice is a filmmaker diagnosed with ALS nearly 10
years ago. Given four years—at most—to live, he has defied the odds, created a
beautiful film, My Name is Emily, and
been the subject of a documentary that was released at Sundance this year. His
memoir was written with eye gaze technology and contains short,
stream-of-conscious musings about his life, his illness, and his purpose. It's Not Yet Dark is remarkable. In short entries, Fitzmaurice tells us a bit about his life, both before and after he became ill. He also describes what he is musing and where his brain, undefined by the illness, is taking him. Like most filmmakers, Fitzmaurice is very visual, and his writings are as visual as his movies. For example, in the midst of a major health crisis and a long hospital
stay, he writes: “I don’t know. I feel different today. Happy. It is a
different feeling from anything else. Last night I dreamed I turned into the
wind and flew. Round and round in cirrus spirals. So high it was beyond height.
I woke up and felt like a king.”
It was hard to separate my own life experience from that of
Fitzmaurice’s wife, Ruth, who appears to be an incredible woman, full of spirit
and drive, with a deep understanding of her role in her husband’s well being.
She and the children are the major reason why Fitzmaurice is alive. When I was
a young wife with a husband dying from a terminal illness, I knew that Lee was
fighting every day to stay alive for us, and I would do whatever I had to do to
help him live. It’s Not Yet Dark is as much a testament to Ruth’s strength as
it is to Fitzmaurice’s will to live.
You will want to read this life-affirming reflection when it
is released on August 1. Later this year, the documentary about his life, his work,
and his family will be released to Netflix. Colin Farrell speaks for
Fitzmaurice in the documentary. Here is the trailer.
This is a very
good CBS Sunday Morning feature about
the My Name is Emily movie and an interview with Fitzmaurice.
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