Confabulation by Julia Jones
Do you remember those signs that used
to crop up on office walls? “You Don't Have to be Mad to Work Here
/ But it Helps.” I always suspected that they were the hallmarks of
a rather aggressive sanity. There's a type of person too – happy to announce “Oh
we're all quite mad, you know!” – when one knows quite
well that they're not; they're just a bit loud and attention-seeking
and probably SMUG. I almost lost my sense of humour when I noticed members of a writer's group
cheerfully claiming to be “mad”. Mental illness is so un-funny and I've usually assumed that most
of us write to remain sane, to make some sense of our experience of
life – to try to keep the madness at bay. Dementia is (currently) an incurable mental illness which gradually takes away the ability to read, write and speak. Last year I read Naoki
Higashida's autobiographical The Reason I Jump: One Boy's Voice from the Silence of Autism and found unexpected insight into aspects of my mother's Alzheimer's. Recently, reading a
book about Alzheimer's has shed a surprising new light onto story-making.
The book is Where Memories Go,
Sally Magnusson's account of her mother's dementia. It's a fine book
and deserves all the praise it has received. I avoided it initially
as I struggle to retain my emotional balance through the challenges of my own mother's illness and I'm still not certain that
I'd urge it on anyone else who is currently directly responsible for
the care of a dementia sufferer. Sally Magnusson, her sisters, wider
family and carers were heroic and extraordinary in their efforts to
see their mother through the last grim stages of Alzheimer's and
safely into the good night. Yet her suffering was profound and the
later sections of this book struck a chill into my heart.
Usually I like to know what I'm letting
myself in for.
Magnusson offers a particularly clear explanation of the invisible
sequence of neural devastation that begins by laying waste to the brain's
frontal lobe (responsible for insight, planning, organisation,
personality, initiative), then the two temporal lobes
(processing and interpretation of sound, formation and understanding
of speech), followed by the parietal lobes (integrating input
from vision, touch and hearing) and the occipital lobe at the
back of the skull (responsible for the processes of vision). This
helped me, for instance, understand why dementia doesn't content
itself with stripping away the capacity to recognise things, places
and people. Its cruelty goes
further as it offers delusions and hallucinations as the disease progresses from the front to the back of the skull.
A few years ago Mum was well enough to
laugh with me when she heard herself asserting that the rather
solidly-built local curate had “flown in through the window” to
visit her. Recently I listened to a friend describe how a woman
with early-onset Alzheimer's became terrified by her perception of the
stairs of her house dissolving to goo – and it wasn't funny at all.
I play “what-if” with primary school children when we're
constructing adventure stories and I'm interested to notice how
frequently the ground beneath their feet fails and they fall, like
Alice in Wonderland, to somewhere else. Primary school children are
immensely resourceful at finding their way back to safety in their
stories. Or they simply declare that “it was all a dream”.
Dementia sufferers can't do this. This mental illness is the most
intense experience of alienation. “Ich habe mich
sozusagen veloren” said Auguste Deter, the first named sufferer, to
Dr Karl Alzheimer in 1901. “I have so to speak, lost my self.”
The brain struggles as it dies. In one
of the most moving passages in her book Sally Magnussen describes her
mother constructing a completely illogical explanation for the
appearance of a marquee in a neighbouring farmer's field. Her own
reactions to the story are conflicted: she admires the bizarre
ingeniousness of her mother's narrative: she wants to laugh: she is
tempted to “bash”her mother with superior logic: she is uneasy at
whether she is doing right to go along with her mother's mistaken
interpretation. “As if I have given up the compliment of arguing
you into sense.”
I understood and agreed with all of this, having
only that morning been struggling to persuade my mother that a
distressing scene when she alleged to have have taken place between
herself and me was almost entirely fictional. Mum had supplied setting,
actions, dialogue for an argument between us that HAD NEVER HAPPENED.
There was the smallest germ of a cause: one morning in the previous week I had reminded her it was
communion, she had said she wanted to stay in bed and have a cup of
tea. I had agreed. End of story? Oh no. Her secret unease at this
footling piece of self-indulgence had blossomed over the intervening
days into an epic of misunderstanding and recrimination that was
upsetting and destabilising. I had fallen back (as so often) on the
tactic of assuring her that “it was all a dream” when I read this
illuminating piece of brain geography in Where Memories Go:
Neuro-imaging has begun to show that
similar neural systems underpin both remembering and story telling,
so it is not really surprising that when memory, mutable enough at
the best of times, goes wrong, stories are prone to take over. There
is even a name for this – confabulation. When key memory functions
are damaged, imagining a possible explanation for an unsettling
experience is a perfectly understandable response. Since the
monitoring systems in the brain that would normally reject an
explanation as implausible are also playing up, the explanatory story
is likely to be experienced as the genuine memory..
We've
all heard of False Memory Syndrome and probably most of us shy away
from this troubling concept. “You mean I'm lying?” says Mum. “No,
Mum, not lying ... misremembering.” It's a tricky distinction to
grasp even when one's at one's most mentally robust and confident. I
think it's also a little like the fact / fiction distinction when
one's imaginary world seems more “real” than actual daily life. "Similar neuro-systems underpin both remembering and story-telling." My heroine Margery Allingham, growing up in a writing household,
claimed to remember an outraged housemaid snatching a childish story
from her hand, exclaiming. “Master, Missus and the visitors from
London all sitting in their rooms writing LIES – and now you
starting!” There's nothing quite as organised in a brain that is
being shredded by Alzheimer's but the elaborate narratives that are
spun by my mother, Sally Magnusson's mother and countless other
dementia sufferers deserve a better descriptor that “false
memories”. I like "confabulations" even better than fictions. For better or worse they sound Fabulous.
Comments
I agree that 'madness' (terrible term) isn't at all funny. But confess to occasional bouts of grim humour that helps to get me through. Nothing I'd ever publish, or even be remotely proud of. But sometimes laughing is the alternative to weeping all the way home on a train.
But the whole narrative, memory thing is truly interesting (when in abstract - just distressing when a daily part of life) Narrative psychology has a lot of interesting elements to it and the 'stories' we tell. And your post is very interesting in adding to what there is to know and say about it. We can't 'cure' dementia (yet) but at least by learning we can learn how to deal with it better - which is the least we can do for people who are blighted by it.
Sending you good thoughts and thanks for opening up this to us, to help us think and talk about it. And lots of love to your mum.
Thank you too Reb for kind words.