I’ve been re-reading Alberto Manguel’s A Reading Diary in preparation for my workshop at the Guardian’s Reading for Pleasure conference.
Here, Manguel responds to the news that his neighbour Barbara, died the night before:
I am furious at the taking away of things, at these brutal changes. And the older I get, the faster changes happen: friends disappear, landscapes clutter. I want my friends to be there always, I want the places I like to stay the same. I want there to be certain fixed points on the universe on which I can count. I don’t want to keep missing voices, faces, names…
He looks for consolation the book he is rereading, The Wind in the Willows, and finds it in an account of Mole finding his old house again.
But if there is no home we recognise, no friends around us, where do we find consolation?
The past 2 months I have been training as a Living Words artist. There are four of us training and we are all writers. But rather than documenting our experience and choosing how to tell it, we are scribes for the people we work with, who are experiencing dementia. We are learning how to receive and hold their words, their experience of life at present and return it to them in a book. Often they recognise themselves in the pages, even if they don’t remember saying these things. I have been working with A and we are coming to the end of this project. I read her book with her and ask her how it feels to read her words in the book. Beautiful, she says.
You can read our blogs about the process here.
In The Myth of Alzheimer’s, Peter J Whitehouse M.D., Ph.D., disputes the current notion that Alzheimer’s is a slow death, and suggests, what if we approach it as a process of brain ageing, albeit accelerated?
By changing the way we think about Alzheimer’s, we change the story we tell about our ageing brains. That matters because stories surround us, shape us, serve as the building blocks of our lives, and weave us into our human communities.
He changes the lens through which we look at Alzheimer’s and other dementias:
Aging is a project, a work of existential art, a story that one continues to write until one can write it not more – it does not end when one is diagnosed with Alzheimer’s by a doctor. The stigma of AD is powerful. But it should not restrict persons whose brains are ageing from finding meaningful roles for themselves.
I think about A and G’s Living Words books, the stories they have told of themselves and their experience of life at present. In these stories there is sadness and pleasure, loneliness and consolation. They are telling their stories, their truth, in their own words.
The same week I was putting together A’s book, trying to stand back from the words and their arrangement, I was also looking over the final proofs of my collection. As I write this, The Art of Scratching is on its way to the printer. You can get an inkling of it on the Bloodaxe website here.
My publisher N is very understanding. He hasn’t complained about all the small changes: commas removed here, a word changed there, the sequencing adjusted. It’s a slightly longer book than originally planned so I was able to replace a poem with 2 new ones and look again at the sequencing. I notice the way poems speak to each other from opposite pages, and how earlier poems suggest possible meanings in those that follow them. I’m happy with it – the small world of my book.