Thank you to the publisher for the ARC. It was compelling me, and still staring at me at the end of my shift, and I decided to read this book. I did so of my own volition and no one contacted me at any point, not to leave a review, much less a positive one.
And once I started, it still just compelled me. With a lot of short sentences, this manages to be truly poetic. The cadence after a while is calming, lulling, partly because the words, and the sentiments, are so beautiful.
This is a memoir of a young man who is diagnosed with ALS, and yet it's so much more. It's a musing on life, without giving concrete answers. It's one man's journey from grief, to hope, from the diagnoses of death to living with the specter of death, but also living life fully.
It's a book that flows through past, and the present, to create a full picture of a life full of love and support. It's gorgeously written, an even more impressive feat when you realize it's written with an eye gaze computer. (Which is also how he's directing movies, now.)
This was a hard read in so many ways, and I found myself crying at more than one point. Sometimes out of sadness, but more times than I expected out of happiness. When his wife stands by him, when he finds ways to connect with his young children, when he decides he can not only live but still do the work he loves. Small moments. Moments from the past that you know won't be repeated as control is stripped from him, something that is made clear from the back of this book.
I wanted to read more by him, but alas, there is no more. His wife has a book coming out, another memoir, and I plan on checking it out as well.