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Metamorphosis: A Life in Pieces

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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. He has bought himself a whizzy, state-of-the-art wheelchair, which may yet be deployed in the summer, heat being “kryptonite” for his MS.

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. 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. 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.In the days and weeks after his diagnosis, when things seemed frightening and bleak, Douglas-Fairhurst often thought of poor Gregor.

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. 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. But now he began to see them as part of a sinister jigsaw: a fiendish puzzle that would, he soon gathered, forever remain unsolvable. AHSCT cannot repair existing damage to the brain and spinal cord, but up to 70% of patients with primary progressive MS who undergo it are able to halt the disease’s development.

This is a beautifully written memoir- the story of a devastating diagnosis but it is so much more than that. He compares this to coming out as gay as an undergraduate, and says that it was more like a process than an event. The early part of the book answers that, harking back to his south London childhood, lanky teenage awkwardness and love of acting (“being myself was much easier when I was pretending to be someone else”).

It meant a six-month wait, during which time he developed problems with speech and speed of thought. It's partly an act of defiance, creating a written narrative out of a bodily narrative over which he feels no control. A few seconds later I found myself peeing into a bush, just outside my front door, while an elderly neighbour walked past tutting and her dog looked back at me with a new found respect. But he knows there are few better places in which to be ill than an Oxford college (he has been at Magdalen for 20 years).

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. While many patients have had to travel abroad (often to Mexico) to receive this radical treatment, he discovered that AHSCT trials were being conducted in London, for which, following tests, he turned out to be eligible. For more details, please consult the latest information provided by Royal Mail's International Incident Bulletin. 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 has also acted as the historical consultant on BBC productions of Jane Eyre, Emma, Great Expectations and Dickensian, and both of the Enola Holmes films for Netflix.

Within weeks, he deteriorated further – had blurred vision for an hour when he woke up, fell over in the street by the Bodleian Library, felt electric shocks tasering his spine if he bent his neck. You either struggle against that, or you relax into it, and it turned out that I was one of those who could relax into it. Too often, us middle-aged blokes with PPMS (the one that just gets progressively worse) get forgotten amidst the mass swirl of the c.As a fellow Primary Progressive MS survivor, it was heartening to read an account of this condition from such an articulate, well regarded author and academic. Amongst many other devastating reassessments of his life and his place in the world, Douglas-Fairhurst was faced with the question of how to tell family, friends and colleagues what was happening to him. His partner, M, set the right example: rather than maunder or end the relationship, he lightened the air with jokes. Douglas-Fairhurst makes illuminating reference to a great many texts, notably Peter Pan and the Alice books on which he has written so authoritatively.

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