Author: Simon Fitzmaurice
Type: Non-fiction, memoir
I read it: August 2018
“Every moment lived is a moment lived.”
This is the kind of book you read when you want to kick yourself in the ass to get started on that next life goal, or simply to remind yourself to stop complaining. It’s about someone living with amyotrophic lateral sclerosis (ALS), and it makes you feel good to know the author is living his life (and also how lucky you must be). The book was written with an eye-gaze computer, which is amazing enough, but the author’s real passion is filmmaking, and what’s more amazing is he continues in that profession even after having his life turned upside down by the disease.
And quite a disease it is. Just before its full onset, Simon Fitzmaurice realizes that he will be doing most physical activities for the last time. The simple responsibilities and pleasures will slip away. He describes being caught in a storm with his son:
I pick him up and run through the rain. He clings to my body as the rain patters loudly through the trees. The fragile boundary between strength and weakness, between holding Jack and letting him fall: I feel it. The last time. And time slows down.
Fitzmaurice didn’t need the prospect of death to jolt him into living a life worth living. On the contrary, he had it all and was perfectly happy. He describes a life that is almost idyllic: the amazing wife, the healthy children, the homey cottages they lived in, a fruitful artistic career. I felt frustrated at the disease for knocking someone down who should be able to have it all.
The author speaks strongly for willpower and standing up for his rights as a patient when he refused to get talked into dying by doctors shortly after the diagnosis. He recounts making the conscious choice to use the breathing apparatus so that he could live a precarious life at home. Eventually, though, the path to full recovery was blocked and the force of sheer will was cut short. After experimenting with various alternative therapies and noting the meaning they can sometimes give, he rails against the false message about healing oneself from the inside:
People get sick. I wish that all things happened for a reason and that all things are in my power to change, but I don’t believe it. And it’s arrogance and a burden to tell someone who’s sick that it’s their fault if it’s not.
Perhaps due to the constraints of writing in such a specific way, the prose is stripped down and straightforward, made up of mostly short sentences. This is a great strength of the book, as it allows pieces of wisdom to shine through without fanfare, each image and yearning plainly there on the page. Several life lessons are available throughout, but one that struck me was from a consultant anaesthetist who the author came to know. When it was time to leave a hospital after a long stay, the man told him to “go home and teach your children many things.” What better way to drive back the dark?