Monday, September 5, 2011

Stories and Illness

I have borrowed a book from my mother-in-law, and I need to give it back. I'm finishing it as fast as I can. It has got me thinking about the experience of illness and how it grows fascinating stories. Stories that give us a glimpse into unique struggles and amazing perseverence.

Jill Bolte Taylor wrote (and spoke) about her experience of having a brain haemorrhage, and what she learnt about life as a result. She trained at Harvard in Neuroscience and worked to promote the American Brain Bank. Her brother had developed schizophrenia and this fact inspired her to learn more about the brain.

She explores the idea that her left (dominant hemisphere) brain was the centre of her language and the source of order and sequencing in her experience. She had a big bleed into her left hemisphere and describes what happened when her right brain became the primary source of her cognition. At one point, she equates her perception and sense of deep peace and timelessness with nirvana.

Interestingly, there was a recent BMJ editorial which commented on Taylor's book and highlights its basis in personal experience rather than scientific truth. Although there is evidence for complementarity and difference in the cerebral hemispheres, Taylor describes a deeply personal, subjective experience.

That said, her story is powerful. She relates the experience of being unable to think logically or retrieve memory intricately. The description was vivid and drew me in.

I couldn't help wondering how she was able to recall it so clearly and neatly. Was she able to form this memory in that period of acute stress, or is she creatively imagining it? Was the trauma of the experience enough to indelibly carve it in her neuronal circuits, despite their distress? Taylor's conclusion is that inner peace is contained in the circuitry of the right brain. That peace is located within ourselves, if we know ourselves (or our brains) better.

Other stories have come via All In The Mind, a Radio National podcastable show which explore all sorts of ideas in psychology and neuroscience.

I recently hear (Sir) Terry Pratchett talk about his experience of a type of dementia, called Posterior Cortical Atrophy, which has resulted in the degeneration of his visual memory. He cannot type his books any more, but uses voice recognition hardware to write. He made an interesting comment about truth and perspective - which will make this post too long, but will turn up another day.

The dementia theme continues in this novel, recently written by another neuroscientist, turned writer, Lisa Genova. She has also been interviewed on All In The Mind. Her grandmother was diagnosed with Alzheimer's Diseaase, and as she researched the disorder, she wanted to know more of the experience of a person with Alzheimer's. When she couldn't find first person accounts, she wrote this book - creating her central character, a fifty year old Harvard Psychology professor who gets early onset Alzheimer's. I haven't read the book, but heard the extract below, in the podcast, and the loss and bewilderment became tangible.

"She sat in a big white chair and the man who owned the house sat in the other one. The man who owned the house was reading a book and drinking a drink, the book was thick and the drink was yellowish brown with ice in it. She picked up an even thicker book than the one the man was reading from the coffee table and thumbed through it. Her eyes paused on diagrams of words and letters connected to other words and letters by arrows, dashes and little lollipops. She landed on individual words: disinhibition, phosphorylation, genes, acetylcholine, demons, morphines, phonological.

'I think I've read this before,' said Alice. The man looked over at the book she held and then at her.
'You've done more than that. You wrote it. You and I wrote that book together.'

Hesitant to take him at his word she closed the book and read the shiny blue cover From Molecules to Mind by John Howland PhD and Alice Howland PhD. She looked up at the man in the chair. He's John, the words she read seemed to push past the choking weeds and sludge in her mind to a place that was still pristine and still intact, hanging on.

'John,' she said, 'Yes, I wrote this book with you,' she said. 'Yes, I remember, I remember you, I remember I used to be very smart.'
'Yes, you were, you were the smartest person I've ever known.'
This thick book with the shiny blue cover represented so much of what she used to be. She wanted to tell him everything she remembered and thought but she couldn't send all those memories and thoughts composed of so many words, phrases and sentences past the choking weeds and sludge into audible sound. She boiled it down and put all of her effort into what was most essential, the rest would have to remain in the pristine place, hanging on.

'I miss myself.'
'I miss you too, Ally, so much.'
'I never planned to get like this.'
'I know.' "
From Still Alice, by Lisa Genova.

The fodder of textbooks and newspapers becomes immediate and personal through life stories. When I hear your story, I can enter it alongside you. I can start to understand your experience a little more, and understanding someone else's struggle, even just a little, is a doorway to compassion and empathy.

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