Simon Fitzmaurice (1973–2017)

A very emotional and powerful autobiography by Siimon Fitzmaurice, a film director with ALS. Its bleak and depressing but hopeful and powerful and uplifting. I haven't seen his works (yet) or knew of him, but this was on the new shelf at the library and the back looked interesting so I decided to pick it up. Definitely glad I did.

Even still with ALS he is still directing and even had twins after having the diagnosis of ALS. While the subject matter is depressing (a man looking down the barrel of a gun basically - with the gun being ALS and coming to terms with the enormity of that, the implications of the ALS, and what it means to be alive, not to be afraid of death, the meaning of life, the meaning of being a man, etc.) Fitzmaurice tackles the subject - and life - with an enormous amount of hope and positivism and reaffirming of life, which is powerful and very motivating.

A wonderful look back at his whole life through his eyes, at times sad, funny, depressing, powerfully uplifting, and everything in between.

… (meer)

"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 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"

One of my biggest 2018 reading goals was to read more of different genres, and I am happy to say that I've been doing great with it (at least I think so). This time I ventured out to read some non-fiction, particularly a memoir, which I honestly never read. But I am so happy that I did.

​I am a hypochondriac, so even reading this book made my scalp tingly with worry and self destructive thoughts. But I am pushing my comfort zone this year, and It's not yet dark was totally worth it.

"It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country."

It's not yet dark reads like a fiction. Maybe it's the first person narrative. Maybe it's the short, to the gut sentences. Maybe it's just the flow of it, but it does not feel at all as I thought I a memoir would feel. Which I think is absolutely perfect for people who don't read much non-fiction (like me).

​ASL is a terrible disease, and it's so terrible because nobody understands why it happens. Nobody can tell that it might happen till it actually happens, and once it does - there is no cure for it. Person loses their mobility, bit by bit until they are completely motionless and powerless in their body. We ll know the saying "your body is your temple", but what do you do when "your body becomes your cage"?

What pulled me into this book was how honest Simon was - he was terrified and he wasn't hiding it. He wanted to live, he was angry, he was desperate and he was real. Death is scary and death was looming over him for many years, taking little bits of him each passing day.

Despite of it all Simon never gave up - he managed to keep dreaming and creating, all made possible with love and devotion of his family. Even when doctors came into his room saying "why would you choose to keep living like THIS?". Even when Simon couldn't move anything except his eyes - he was still there, he was a man who loved and was loved in return.

​If you are looking into venturing out into non-fiction I'd definitely recommend It's not yet dark. It's a quick ,but very memorable and important read.… (meer)

This is another memorable addition to my library. How many times do we see someone disabled and our first gut reaction is pity? Then we probably rationalize that pity into some form of dehumanization. This book requires you to break that reaction. ALS is such a unique disease and Fitzmaurice takes us through his journey from beginning to the nearest end. Even though he became completely immobile, writing this book with an eye-gazer computer, he was still himself. This book requires you to question the meaning of life, of being alive, and of being happy. He spends much of this book advocating for ALS ventilation. His argument is compelling. Any book that pushes its readers to a new place, or begs for further investigation, is a keepsake to be shared.… (meer)