“I have ALS. It is a part of who I am, evolving, influencing and living with all the other parts of me. The greatest achievement of my life is that somehow I managed to be the person that Ruth fell in love with. That’s it. And our boys save our lives every day.”
I found it hard to begin this review. I always struggle when I feel encompassed by the book, as if there is no way to share my feelings unless I pass the book through the screen to you.
Simon Fitzmaurice is a film maker, a writer, and a father. He also has ALS. Using eye-gaze technology, Fitzmaurice wrote a compelling series of essay that captures the beauty and brokenness of his life both before ALS and once he was diagnosed. His first feature film, My Name is Emily, was also written with eye-gaze technology and stars Evanna Lynch (Harry Potter‘s Luna Lovegood), and has been on my list of films to see since before I knew who Simon Fitzmaurice was. It’s now at the top of the list.
If nothing else, It’s Not Yet Dark is a reminder that love holds us together, and that we are capable of much if we let ourselves be open to the possibilities. I was blown away by Fitzmaurice’s story and the artistry of his prose, and this book is high on my list of recommended reads.
It’s Not Yet Dark will be available August 1, and I encourage you to get yourself a copy. Also, keep an eye out for the Documentary of the same name, released in the US later this summer and on Netflix in December.
Fitzmaurice’s book is a reminder that love and family can keep you standing, even when your legs buckle, and that your story is an important piece of our world, no matter how you tell it.
You can order your very own copy here.