Hazel McHaffie

encephalitis

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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Summer holidays

Holiday time is here again for Scottish schools, and my calendar has several weeks blocked out in indelible ink for the grandchildren who come to stay every summer. A lovely excuse to forget work and get out and about exploring this beautiful and historic land. We’ve made for the sea several times just to escape the intense heat!

EI Book Festival programmeeAlso written in capital letters in the diary are assorted slots for the Edinburgh International Book Festival – always a highlight in the year. As usual some sessions were sold out before tickets even went on sale to the public (grrrr! Why do they do that?), but by dint of buying them on the first available day, I have seats for events about topics as diverse as fleeing a religious cult; a journey into dementia; a history of the Dukes of Devonshire; the neuroscience of memory; the death of Dr David Kelly; the ethics of dying; one woman’s experience of acute encephalitis; and the role of storytelling in maintaining sanity. Sounds pretty good to me.

I’ve also had invitations from elsewhere to attend a debate on assisted dying and to showcase my work in an arts and ethics symposium, both in August, so lots of excitement ahead.

Over my Dead Body coverOn the Over my Dead Body book front things are moving steadily.  Lots of double checking needed to be sure every step is taken on sure foundations, but this week the final final details are going off to the cover designer, and as soon as he’s worked his magic, the whole thing goes to the printer. Too late then for any more tweaking … Help! Hard to believe we’re in the home straight.

 

 

 

 

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