The first, startling epigraph in Nicci Gerrard’s new book, “The Last Ocean,” comes from Emily Dickinson: “Abyss has no Biographer.” Gerrard sets out to tell the story of dementia, a disease that can appear to consume those it afflicts. After her father, John, died in 2014, the author — who writes best-selling thrillers with her husband under the name Nicci French — embarked on learning more about the disease as both a journalist and an activist. The result is a tender, inquisitive tour of a subject that can be raw and painful. Below, Gerrard talks about loss, art that punches you in the solar plexus and the experience of writing a book that doesn’t answer questions.
When did you first get the idea to write this book?
I first had the idea when my father, who’d been living with dementia for over 10 years, went into hospital in February 2014. After four weeks without anyone to see him — we were allowed in for very limited times and then not at all, because of a norovirus outbreak — I barely recognized him. I will, for the rest of my life, feel terribly that I didn’t get him out earlier. Then he lived at home for nine months. He had become skeletal, immobile, inarticulate, and in a way he felt utterly lost, like a ghost in our lives and in his own life. He would lay downstairs in a hospital bed, looking outside at the garden he used to love.
There was this clear sense that he’d already lost everything he had, everything he was, all his capacity; there was nothing left — and yet somehow that he didn’t lose himself. In the book I say that if I were religious, I would call that self he retained his soul. Something very indelible remained.
And witnessing that, I knew there was a book I could write about how mysterious it is to be human, really. But I absolutely didn’t think there was a book I would write. I didn’t want to write a memoir; my father was a very private man, and my family’s quite private, and there are lots of wonderful memoirs. So instead of writing what I’d been through, I launched this campaign for better care for those who go into hospital. For three or four years, I spent my working days talking to doctors, nurses, carers and, above all, people living with the illness. I knew I had to find a way of making that into a book full of lots of different voices and stories. I didn’t want to write a book that was certain and had answers. I wanted to write a book that was full of questions and feelings.
What’s the most surprising thing you learned while writing it?
It changed the way I thought about so many different things — about being alive, actually. If I had to think of one thing that knocked me back: I became more optimistic and less scared about getting old, becoming frail, than I had been before I started. There was nothing redemptive about Dad’s last months; it was just cruel and awful. I went to see an autopsy of someone who had had dementia, and the person conducting it pointed to these myriad bits of the brain where dementia can occur. There are hundreds of different kinds of dementia. Some people have impaired brains, but they show no sign of dementia; it’s only at death that you see they had the condition. And others with dementia seem, at death, to have a healthy brain. So it’s a very mysterious disease, which is why it’s hard to find the cure. You probably have to find hundreds of cures.
But I’ve seen people with it who live with a sense of spiritual adventure, who refuse to be ashamed, who manage to hold on to themselves and live with endurance and lack of self-pity and go bravely into the night. And I’ve seen so many carers bearing the unbearable and holding onto love. I thought writing the book would be painful, and it was, but it made me realize just how extraordinary people can be.
In what way is the book you wrote different from the book you set out to write?
I didn’t know what book I was setting out to write. I knew it would follow the stages of self-loss and be full of other people’s voices and stories as well as my own, and be a book of uncertainty and doubt. I knew I wanted it to be very emotional and intimate but also dispassionate and philosophical. But when writing is going well, it leads you to places you didn’t know you were going to go.
I set out partly to make a confession to my father, but I didn’t know what that confession would be. I knew the journey in a big way, like when you look at a map and see the road, but then when you set out there are forests and ditches and floods.
Since it was published, it’s changed again. It’s changed radically for me. I’ve been going around the country doing talks and interviews, and in the end, I haven’t experienced anything like it as a novelist. People get up and instead of asking a question, they start crying. And they start saying things out loud that they’ve never said to anyone, in front of a roomful of people.
Who is a creative person (not a writer) who has influenced you and your work?
Käthe Kollwitz. She was a German artist and a socialist and pacifist and grandmother. She lived through both world wars. She lost her son in the first and her grandson in the second. She made the most extraordinary prints and sculptures about the deprivations of war and about female suffering. The first time I saw her work, I’d never heard her name. I walked into this art gallery in Berlin and thought I’d been punched in the solar plexus.
Her works are often in black and white, and they’re very strong portrayals of women grieving. There are lots of self-portraits that look right into and through you. They’re scary. And tender. She’s my hero. Men often act and speak, and women are the ones who mourn and bear witness. She did both.
Persuade someone to read ‘The Last Ocean’ in 50 words or less.
Dementia is everywhere: if not you, then someone you know. This is a book about being vulnerable, frail, at the mercy of others. It’s also full of stories of courage, love, hope, even joy. It’s about what it is to be human, what it is to say goodbye.
‘The Last Ocean: A Journey Through Memory and Forgetting’
By Nicci Gerrard
254 pages. Penguin Press. $28.
This article originally appeared in The New York Times.