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Posted 20 hours ago

Metamorphosis: A Life in Pieces

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It really is time that there is a concerted effort by the NHS to level up diagnosis, care and the longer-term options.

The whole thing sounds to have been so gruelling and lonely: much more so than I’ve made it sound (you must read his book for the full horror show). Yet, as with everything Douglas-Fairhurst does, it's also beautifully written, with great humanity, and wit (occasionally laugh-out-loud funny), and it doesn't dodge the serious business of being at the mercy of one's own increasingly self-defeating body. Elsewhere the giggles bubble up from fantastical figurative language, comparable to Dickens’ zany similes and metaphors. When a trapdoor opened in Robert Douglas-Fairhurst’s life – the abrupt diagnosis, in his 40s, of multiple sclerosis – he couldn’t help thinking of Gregor in Franz Kafka’s Metamorphosis, a young man who’s changed into a giant beetle, imprisoned in bed, legs waving feebly in the air. To calculate the overall star rating and percentage breakdown by star, we don’t use a simple average.

As he says to his students at the end of his introductory lecture at the beginning of each academic year, literature is not a mirror, rather it is ‘a lens we could use to refocus our understanding of the world. But, after all that is a socially common response in most people in the presence of serious illness or bereavement. It was a shuffling in his legs that had made Douglas-Fairhurst seek medical advice – and now a neurologist confirmed the worst.

The book ought to be gruelling and it doesn’t shrink from candour about the trials of MS – the pain, anxiety, shame and self-pity, and the thoughts of ending them at Dignitas.The author is clearly living in an area of the UK where comprehensive services, ranging from Physio to umpteen neurologists and the opportuntity to take part in stem cell therapy are an option. But even as he read, and took solace in that reading, there was no ignoring the fact that his own disease was developing rapidly, symptoms that had previously been content to remain in the background now thrusting themselves wholeheartedly upon him. He struggled to find words that were not ‘ungenerous or ungrateful’ for a Facebook post, which I remember seeing, in which he says that ‘the line between sympathy and pity is one I’m especially keen not to cross.

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