It's Not Yet Dark–Or Is It?

We love some books for their message. We love others for how they say it. A book I read recently has both message and the artistry of wordcraft.
You don’t often find the combination of beautiful imagery in Hemingway-esque sentences in nonfiction works. But you find it within the pages of Simon Fitzmaurice’s memoir It’s Not Yet Dark.
It’s one of the best books I’ve ever read. And I plan to read it again. Soon.
Diagnosed with ALS and given four years to live, Fitzmaurice finds ways to celebrate his humanity. He invites us into his world, and we find no darkness there.
Our modern world often thinks of the numbers of people with an affliction. Cancer patients become cancer statistics. People become numbers. Fitzmaurice draws our attention away from numbers and shows himself, his humanity. He elevates the suffering.
“It’s not important that you know everything about where I come from. About who I am. It’s not important that you know everything about ALS, about the specifics of the disease, about what it’s like to have 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.” Fitzmaurice, 92
There are light moments in the book. As we navigate his country, Fitzmaurice provides pictures of the profound and the mundane.  And He makes mundane moments profound by personifying the walls of a newly acquired home.
“There is no way better to get to know a house than to paint it. Down on your hands and knees in every corner of every room, a house reveals itself to you” (26).
But then there are deeper moments. And dark times. I remember a friend telling me how medical caregivers had explained the progression of ALS when her husband had it. The couple could make decisions in advance. They knew what to expect.
But in Fitzmaurice’s Ireland, patients don’t get that information. There is no need to prepare yourself to make a decision. The medical system does not allow you to decide.
By accident, Fitzmaurice faces a crisis in which the available caregivers aren’t clued in to the progression of the disease and how Ireland’s healthcare system handles it. (Hint: the system doesn’t handle it.) So when he stops breathing, these caregivers ventilate him. They put him on a respirator.
He keeps living.
When people within the system realize what has happened, they try to correct “the mistake.” They ask Fitzmaurice why he wants to live this way. They think they know the answers. They even think they know better than he does what it’s like to have this disease.
But they don’t know. And they don’t know Fitzmaurice.
“You have ALS: why would you want to live? ALS is a killer. But so is life. But just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to commit suicide. Or to endorse euthanasia. I refused. . . . In Ireland ALS patients are not routinely ventilated. They are sedated, counselled, eased into death. They are not given a choice. Not like in other countries, including the U.S.” (84-85).
Imagine being counseled to remove yourself from the world.
It’s not dark in Fitzmaurice’s life. It’s not dark in the US–yet. But voices advocating the counsel of death are moving from a whisper to an audible call urging the afflicted to decide a certain way. To choose death.
That’s not the end of the book–because being put on a respirator was not the end of Fitzmaurice’s life. It was the beginning of a new season for him. A season of creativity for him. A season that brought this book (and more) to us.
The end of the book is a beautifully crafted affirmation of life and love. It’s among my top three most satisfying reads ever.
Ireland and America will be all the better for our having read it.

Photo Credit: Pixabay

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