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Metamorphosis: A Life in Pieces

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The electric shocks that ran up and down his spine if he bent his neck forward made him feel as if he was being Tasered at close quarters; in the mornings, his vision was blurred; his legs grew more unpredictable, and his falls more frequent.

What I needed was laughter,’ Douglas-Fairhurst says, and later, ‘the worst was not, so long as I could still look at it with a comic squint. Photograph: Antonio Olmos/The Observer View image in fullscreen ‘My body was like a dying coral reef’ … Robert Douglas-Fairhurst.We use Google Analytics to see what pages are most visited, and where in the world visitors are visiting from. He experienced “bladder urgency”, a condition that affects up to 80% of MS patients; his voice began to grow faint. It’s not so much that he’s an Oxford literature professor but that, from childhood onwards, he looked to books for companionship and for lessons in how to live.

Parallels with the life and writings of this fellow traveller in the realm of compromised faculties run through the book in counterpoint to the progress of his own disease, but there is a stylistic parallel too. Photograph: Antonio Olmos/The Observer View image in fullscreen Robert Douglas-Fairhurst in his room at Magdalen College, Oxford: ‘It’s a community.I don’t want to be too Pollyanna about this, but it’s better to be grateful for what you can do than to pine for what you can’t. What he gives us isn’t just the story of an illness but a story about the importance of stories – of imaginative literature as bibliotherapy. As it turned out, the second scenario was closer to the truth, but at the time it was difficult to be suitably terrified because I simply didn’t know what, exactly, I was scared of. From Kafka to Barbellion, this is a literary map of the journey from the kingdom of the well to the land of the sick, and forwards into a hopeful future.

He compares this to coming out as gay as an undergraduate, and says that it was more like a process than an event. Words stop working, and it is hard to make a joke when one is afraid of making some ghastly breach of taste, like farting in church. I found this upsetting as myself and others simply have to choices, the NHS is too streched and the only option is to muddle through a descent towards increased poverty and dissolution. What’s eerie about this in retrospect (and anyone who reads his book, the first literary account of such a procedure, is bound to feel it) is the way that his isolation – a long pause attended by many masks and gowns – prefigured the pandemic, which would arrive only months later.

M, too, was sanguine about what might lie ahead – Douglas-Fairhurst carefully outlined a series of increasingly grim scenarios, beginning with whether M would be willing to cut his toenails for him – and he was also funny about it, ready to take the piss. This is a very honest account of MS and it is clear the author has encountered many of the issues which people face.

Since then, one drug has been approved by Nice [the National Institute for Health and Care Excellence], albeit not a very effective one. Metamorphosis is the best book I have read about multiple sclerosis , and that is because it is about so much more. It persuasively builds the case for the ability of stories to offer hope and solace; to help us become ourselves, over and over, even in extremis. As well as the medical texts he read, he became fascinated by novels and plays in which serious illness plays a major part. It took him deep into his own mind: his hopes, his fears, his loves and losses, and the books that would sustain, inform and nourish him as his life began to transform in ways he could never have imagined.MS sufferers who suffer with the more common relapsing/remitting ('good days and bad days') form of the disease, which is more prevalent amongst women. Only some days later did he tell his family, and his partner, M, to whom Metamorphosis is dedicated: “We don’t live together, so I had some breathing space. Other authors include Beckett, Burgess, Joyce, Keats, Tennyson, Heine – among many, many others – and, of course, Kafka – varifocal lenses on other worlds. Weak, vulnerable and permanently attached to a drip, he would be barrier nursed for a month at least. Though Samsa is at first cared for by his family, it isn’t long before he becomes a prisoner in his own bedroom, where eventually he dies.

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