Sunday, May 20, 2012

This has been such a rich weekend in the part of London where I live, Queen’s Park, which hosted its second book festival.

For several hours over the past couple of days, I feasted on discussions that included Alex Bellos and Alexander Masters (‘Mathematics and the everyday’ – truly re-ignited my love of maths, its beauty and vitality), Natalie Haynes (‘A touch of the classics’ – so impressive, how she makes the classics relevant, alive and funny!), Kate Summerscale (‘After Mr Whicher’ – mainly focusing on her new book, Mrs Robinson’s Disgrace – such a generous sharing of how the story came into being, a story the author researched so comprehensively. I so need to read this book), John Lanchester and Justin Cartwright (‘Money talks’ – not a theme I am generally attracted but, but, having heard both authors today, I have now added their books urgently to my ‘to-read’ list), and Andrew Lycett, Nick Rankin and Zachary Leader (‘The art of biography’ – I am hugely attracted to the genre and this session really delivered on enhancing my understanding of its inherent art).

There was much else happening, but unfortunately I could not make all the sessions…next year…

For now, I want to talk about one of yesterday’s sessions. This involved Edwyn Collins, the musician and founder of the 80s band Orange Juice, his wife Grace Maxwell, and Nick Coleman, the arts and music journalist.

All three have been affected by loss. Edwyn Collins suffered two catastrophic brain haemorrhages approximately 7 years ago. His wife has written of their journey since in the memoir Falling and Laughing: The Restoration of Edwyn Collins (Grace Maxwell, Ebury Press, 2010). Nick Coleman’s world changed forever when he experienced sudden neurosensory hearing loss, which left him with complete nerve deafness in his right ear and forever changed his perception of music, his passion and life. Coleman shares his experience in his recent memoir The Train in the night: A Story of Music and Loss (Jonathan Cape, 2012).

I have just recently read Nick Coleman’s book (I am looking forward to reading Grace’s book next). Having experienced a similar event myself, I connected with much of what he says and lives. But what I liked most about his memoir was the sense of his illness happening in a life, a new chapter in a story that had already pretty much evolved, and continues to evolve. In the world of medicine, the ‘patient’ is too often seen as the illness, rather than as an individual for whom the illness occurs in a story that already has a beginning, and a middle, and will have a future, with or without illness. Nick Coleman’s book is rich in the details of his life, the music, the backdrop of history and politics, the catastrophic event that happened and affected pretty much everything about him, yet does not define him.

Grace led a fascinating discussion, with both Nick and Edwyn, as well as the audience, joining in. They spoke of how we can take ownership of who we are, and how this is possible through our sense of how we ‘get’ the world, which for Edwyn and Nick was through music. Our minds are mostly silent and unseen – what goes on inside one’s head often only comes to light when something goes wrong. Grace spoke movingly of the fatalism that often surrounds strokes and adult brain injuries, and the language used, such as ‘plateauing’, and ‘no further recovery’ possible. Edwyn is testament to the fallacy inherent in these assumptions, as he continues to improve, and is now back working and performing.

When I suffered something similar to Nick, what struck me most was the language used, its slipperiness and its tendency to apportion blame. I felt that, in ‘losing’ my hearing, I was in some way culpable, at fault, ‘my bad’:

A Quieter World

I lost it in Waitrose, on a Saturday afternoon,

in the frozen food section.


out of the blue,

there one moment, gone the next,

as if the mute button had been pressed,

noise replaced by hushed, indecipherable tones.

No warning,

no explanation.

‘One of those things’, the doctor said

‘You have lost it forever, it will not return’.

Odd to speak of losing it,

as if I had some part to play,

was somehow careless in that supermarket aisle.

No, I did not lose it.

It abandoned me, noiselessly.

The session ended magically, as Edwyn performed two of his songs. This was wonderful and moving, not ‘because of’, or ‘despite’ his illness, but more due to the fact of Edwyn Collins, and Grace, in whose lives catastrophic illness happened, and has been endured and bravely dealt with, but whose lives go on, and more chapters continue to be written. This says so much, not about the illness, but about the man and the artist.