It's a while since i posted anything, and in the end I decided to take off the last post. It just wasn't working. This one includes a poem which was posted earlier. It's a small part of the draft of a book which coud happen, who knows. After the poem, there's a copy of an interview Alzheimer recorded with Auguste, which came from his notes. It might be possible to read this interview in different ways.
If you read the previous version of the poem, you can scroll down for the interview.
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In the version here, Auguste has lost herself, but in a very different way from the usual story – not from an disease that hasn't been 'invented' yet, but from another direction, one we might define differently now, and which might have a very different conclusion.
Maybe it’s not important to decide which is ‘real’, but to question what’s real, how stories form and why, and what they do.
What is the story
Story is elusive. How do we know when a story is true, has truth, helps us to make sense of our world and ourselves, is formed to disguise something we don’t want revealed, helps our suffering? A story can be selected from many others because it serves other purposes. Story helps us to justify our actions. Story protects us from lack of control, it can give us an illusion of our own individual powers. We can grasp agency from chaos. Story can re-establish ourselves as the centre of everything, it can separate us from knowing randomness.
We have come to feel separate instead of being a small part of something much bigger, of the Buddhist term ‘interconnected’ - that we’re affected by, part of, everything. That applies to life and death too. In this culture we’ve hidden death and dying away somewhere. There are stories to protect us from death; one of my favourites is ‘life insurance’. We look for who or what is to blame for a. death.
We can’t put a shield around ourselves. Our attempts show in so much of our collective life. I am different from you, we are different from them, ‘I’ need to protect ‘myself’, ‘they’ shouldn’t come across the boundary I call ‘here’. By extension, ‘I’ need to protect what I love, what makes me who I think I am. So I’ll find a reason to dislike, to hate, to exclude, to attack, to conquer, to destroy.
There’s a story about how each of us is too. We’re formed from the genes of our family, from experiences which become part of who we think we are, from the ways other people see us and describe us, from trauma and difficulties we experience. From all that, we establish a story about ourselves. I’m this, I’m that. We form a self (ourselves) and then we believe that self is real, not a collection of stories. But we all change, whether we choose to or not. And so we have to find a way to move on from an earlier self, to meet the transition, to adapt and rewrite our story of who and what we are. Or we can decide to have a different perspective.
I could go on giving examples of all this - like everything else it’s a story, another way. I’ll tell a story - the core is real, and there might be many other stories other people might create around the core.
When I had the phone call telling me that my son had died, one of the earliest things I said was ‘I knew this would happen.’
What was I doing? I don’t think I need to list here everything else that was going on, internally and in the people around me. You can fill that in. But that statement stays in my mind. I knew this would happen. This was a story that desperately tried to protect me from the chaos – I knew it already, it was already part of my understanding, somehow I even ‘owned’ it.
But did I know it? Most of us fear for our children’s lives, and fear for our own lives if they died or were harmed. Some of those fears come true. Does that mean we ‘knew’ it would happen? Was it an inevitable pattern, predictable? Did I know, or was it part of a range of experiences that I thought about, imagined, including many we might call more positive - that his relationship would last and would nurture both of them. That they might have children. That I’d be around him as he got older and the few grey hairs he had got more distinct? If all these thoughts had come to happen, would I have known that too? These are stories; when one of them comes into reality, does that mean I ‘knew’ it?
I’m not blaming myself here, this is just the strongest example I’ve known of trying to grasp a story to protect me from the inconceivable and the unbearable. Of the power, and the risks, of story.
And I love stories. They satisfy something deep. I write them. I read them.
She’d lost herself, she said
Cooking and cleaning. I kept quiet.
Friends? No, I had Karl, and Karl had me.
I did his bidding, what he wanted me to be.
Like Mother did, and her own mother too.
I was all he asked for, more. Now I am fifty.
My daughter’s grown, she’s married well.
I taught her what I knew.
She lives the way I’ve lived.
I think I’ve let her down.
I hardly see her
but her eyes are red and sad.
We could have gone on until some kind of end.
I had a roof, enough to eat, that’s something.
My mother’s voice whispered it loud.
…
One day I saw them, her hand tucked
under his arm. Her head just reached his shoulder.
Years since I felt his body through my touch.
He looked down at her, and he smiled.
I ran back, tried to stay steady
but the ground quaked and the pans
crashed on the kitchen tiles.
No matter how I tried, the picture
wouldn’t fade.
Her arm tucked under his.
The look.
The smile.
And not for me, one single smile
for all those years.
I was no longer his,
he was not mine.
I was, he said, unwell.
My duties were undone,
and so was I.
I did not fulfil
his expectations from a wife,
and more. I didn’t hear.
I said I saw them walking in the street.
What patience there was left drained from his face.
He placed his knife and fork on his plate,
stood up. You’re ill, you must be mad.
You made it up. He left the house.
I know now where he went.
I cleared away, my hands shook.
The plates smashed on the tiles.
I swept the floor. However
hard I swept, the sharp shreds
stayed.
…
You’re mad, he said.
I saw you, saw you with her.
It’s Monday, wash the sheets.
I can’t, I whispered.
You’re not well. I’m going
to get you help.
I saw her. I’d even smiled.
Husband died not long ago.
Known. Greeted. Neighbour.
Her hand tucked under his arm,
looking up at him. I saw you with her.
You’re mad, he said again, and left the house.
I sobbed. And when I’d cried
I heard him in the hall.
That’s it, he said. I’ve found a place.
A place? A place for you to go,
where they’ll take care of you
for now. He frowned hard as he spoke,
his voice tight in his throat.
Go. What could be worse than this?
I knew the place well. Gardens and grand house,
though I knew what it was for. I cried.
You’re mad, he said. You don’t do
what you should, what wives should do.
His big fists held his knife and fork,
white at the knuckles. Get your things.
What now?
Yes, now.
I didn’t know which things were mine.
I got some things.
…..
My arm was under his, gripped
under his elbow so it hurt.
It wasn’t kind, he thought I’d run
or cry and shame him.
They met us at the door.
They signed me in.
The hall was big, sun shining
through huge windows.
She’s not well.
They summed me up.
They didn’t smile. He paid.
He left, he didn’t look at me.
They took me to the back,
dark, sunless, cold.
A corridor of rooms,
the doors all shut.
A hostile smell.
The sounds.
I heard the sounds.
The door they said was mine
opened. I went in.
The door was closed.
..............
In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical records of Auguste Deter. In these documents, Dr. Alzheimer had recorded his examination of his patient, including her answers to his questions:
"What is your name?""Auguste.""Family name?""Auguste.""What is your husband's name?" - she hesitates, finally answers:"I believe... Auguste.""Your husband?""Oh, my husband.""How old are you?""Fifty-one.""Where do you live?""Oh, you have been to our place.""Are you married?""Oh, I am so confused.""Where are you right now?""Here and everywhere, here and now, you must not think badly of me.""Where are you at the moment?""We will live there.""Where is your bed?""Where should it be?"
Chilling? It might be.
…
Chilling, yes.