Metamorphosis: A Life in Pieces

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With everyone in the picture, Douglas-Fairhurst proceeded to do what he has done ever since he was a child: he read furiously, hoping to make sense of the new world in which he found himself.

And part of the agenda here, no doubt, is to make readers just a little more aware of MS (which clearly has a history of misrepresentation) - whichever passport they currently hold. Metamorphosis is the best book I have read about multiple sclerosis, and that is because it is about so much more. 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). 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. A darkly comic and moving memoir on what it means to be human in a world where nothing is certain, from the award-winning Oxford professor.

Cummings, who died aged 30, didn’t give the name of his illness but the symptoms are unmistakably those of MS.

Weak, vulnerable and permanently attached to a drip, he would be barrier nursed for a month at least. For me the funniest moment arises from a wholly unfunny circumstance; one of the symptoms of his condition is urinary ‘urgency’. But now he began to see them as part of a sinister jigsaw: a fiendish puzzle that would, he soon gathered, forever remain unsolvable. 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.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. 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. Thanks to a faulty immune system response, the nerve cells of someone with MS are gradually stripped of their protective myelin sheaths, which means they can no longer carry instructions from the brain to the rest of the body without some of this information being lost along the way. 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.

While it was entirely possible that 20 years could go by and I wouldn’t notice any difference, it was also possible it could be the trigger for all kinds of disastrous things happening to my body.Yes, I’d had many months to prepare for the pandemic – and again, this is going to sound holier than thou, but I think it gave me more empathy for people when it began. 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. But he is kind and practical and generous, and those are the things you need if you’re ill – and my book, in part, is a love letter to him. Not everyone is able to access a timely diagnosis, have a choice of DMTs let alone reach the "holy grail" of stem cell treatment.

Too often, us middle-aged blokes with PPMS (the one that just gets progressively worse) get forgotten amidst the mass swirl of the c. Reading', he suggests, 'allows us to work out who we are by imagining who else we might have been, or who we might yet become. We use Google Analytics to see what pages are most visited, and where in the world visitors are visiting from. The white lesions revealed by his MRI scan suggested it was likely his central nervous system had already suffered permanent damage. 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.In his lovely, book-lined room in Magdalen College, Oxford – open a window, and you may hear the sound of a deer coughing in the mist – Douglas-Fairhurst, a fiftysomething professor of English whose studies of Lewis Carroll and Charles Dickens have won literary prizes, and who has acted as the historical consultant on, among other productions, the TV series Dickensian and the Enola Holmesfilms, gamely waves an ankle at me. Most alarming of all, there were moments when he could not think, as if his brain “had been replaced with a lump of warm paste”. 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.