Hazel McHaffie

Brain on Fire

Festival time again

It’s that time of year again: the Edinburgh International Book Festival is in full swing. My happy place!

On Saturday I had the pure delight of listening to three excellent speakers all dealing with topics very dear to my heart, all having just published or just written new books.

Retired neurosurgeon, Henry Marsh, talked about the lessons he learned from admitting his mistakes as a surgeon, and how vulnerable he’s been facing up to his own diagnosis of advanced cancer and his impending death. The transition from one side of the consultation table to the other has proved surprisingly difficult, he admits.  Given his stature and experience, his honesty and humility are compelling, and somehow give us all permission to feel vulnerable and afraid. I’ve read his earlier books and listened to him several times, but with his latest one called And Finally, I fear he might just have laid down his pen.

Abi Morgan, is an award winning screenwriter, with brilliant TV series like The Split, and films like The Iron Lady, to her credit. She’s also dealing with treatment for cancer, but the main message she was sharing at the Festival was the experience of her husband, Jacob, developing a condition known as brain on fire, a form of encephalitis, which caused him to believe she was some kind of imposter. It has taken eighteen months and a long stay in hospital for him to recognise her. She too talked with such frankness and insight. The film rights to this most unusual love story have been sold, with Morgan herself writing the screenplay, and already thinking of POVs and actors – I’m already eagerly anticipating it.

Nihal Arthanayake, an Asian BBC radio presenter, used his wealth of experience interviewing celebrities and interesting people to talk about the art of making conversation. In this digital age where social media is cultivating an increasing sense of narcissism, he feels, we need to learn to take a real interest in people, engage in meaningful empathetic dialogue, and ‘listen to understand’ rather than ‘listening to talk’, as he put it. I totally agree. He’d be just the kind of person you’d want beside you at a long dinner party!

Then, on Monday, this was followed by Amy Bloom talking about her husband Brian’s Alzheimer’s and taking him from the USA to Dignitas in Switzerland to end his life. She’s an author, screenwriter, teacher, therapist, social worker, and spoke so eloquently of the slow realisation of what was going wrong with him, and his passionate wish for autonomy and agency in death as in life, which she respected. In her State of California there is no right-to-die provision, and she vividly captured the hoops they needed to go through to establish his capacity to make this choice even when dementia was taking away so much of his true potential. I loved her robust no-nonsense approach.

Medical ethics is alive and very well in the world of books! What a fabulous opportunity to listen, without interruption or distraction, to these fascinating super-articulate people, for whom writing has been therapeutic and cathartic, to travel with them into some most intimate and troubling places, and to do so from my own home, at an affordable price, choosing just those topics that really float my boat. A brilliant facility which has come out of the pandemic – thank you EIBF.

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Journey into terror

Scottish Power studio3.30pm and New York journalist, Susannah Cahalan, has just walked into the Power Studio Theatre. She’s beams at the audience, big blue eyes and a dimpled smile – the picture of health and vitality. No outward sign of the terrifying illness: acute encephalitis, she’s charted in Brain on Fire.

Suzanne CahalanShe was just 24 in 2009 when she began to experience vague symptoms – numbness, mental blanks, emotional lability, lack of focus. But she’d just begun her first post-grad job as a reporter, and her first long term relationship, so she initially put it down to the sense of confusion and disorientation of new beginnings. The insomnia, erratic behaviour, mood swings and paranoia worsened however, she had a sense of being outside herself looking down on herself. Convulsions, hallucinations, and increasing paranoia followed, and as she says, ‘My first serious blackout marked the line between sanity and insanity‘.

Diagnosis was painfully slow. Initially she was thought to be ‘suffering from alcohol withdrawal‘. It was only when she was given steroids and immune therapy that she started to improve and a diagnosis of auto-immune encephalitis could be established. And as she admits, it takes a courageous ‘renegade‘ of a doctor to give high doses of steroids in the absence of a clear diagnosis.

Looking back on her behaviour at the time, she perceives it as ‘monstrous‘ and admits it frightens her to think she could have acted in this way. What kind of a person is she? What is she capable of?

How did she cope? Her family and friends were key to her survival, and her natural stubbornness stood her in good stead. And taking up a post-graduate course was her ‘cognitive therapy‘. Now she campaigns for better diagnosis and treatment for others. Knowledge is increasing but there is still much to know in a relatively rare illness. (The first case was named as auto-immune encephalitis in 2007; there are now 13 different forms of it.) 

The chairman, Charles Fernyhough, a psychologist, describes her book as intensely brave, unflinching, moving and thrilling, pacey and vivid. Given her period of amnesia how did she manage to record events so fully?

She employed her journalistic skills to the task, working in three phases. First, in order to give the book a sense of authenticity, she hand-wrote all she could remember before she read or listened to any other reports, using amongst other aids, her own ‘bizarre‘ Word documents written while she was actively psychotic. She’s fully aware that there are inaccuracies arising out of her own faulty memories – eg. she was convinced that she wore an orange name band saying FLIGHT RISK. Such a name band didn’t exist; it was yellow and said FALLS RISK.

Next she read her medical records, and watched videos of herself hallucinating (she was on an epilepsy ward where patients were monitored by cameras). Finally she interviewed other people for their accounts. This last was not without its problem. Her mother, she says, rewrote history, minimising the seriousness – her way of dealing with it. Her father exaggerated things to such an extent that she had to resort to emailing questions to him, the only way he could handle it.

In writing everything up, Cahalan was conscious of her own obsession with health and science. She knew she had to be brutally honest but she aimed to make the difficult science palatable and accessible, and for the finished book to read like a medical thriller. She reads enough of her own dog-eared copy of it to convince us that it is.

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