Metamorphosis: A Life in Pieces

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MS is a fairly common illness, affecting around 100,000 people in England. But there are two kinds of the disease: relapsing remitting and primary progressive. Douglas-Fairhurst’s diagnosis was for the second kind, which is the more serious. 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. The white lesions revealed by his MRI scan suggested it was likely his central nervous system had already suffered permanent damage. As he puts it in his book: “My body was dying like a coral reef.” There were moments when he could not think, as if his brain ‘had been replaced with a lump of warm paste’ Reviewer and features writer for publications including the Daily Telegraph, New Statesman, Guardian, Times, Art Newspaper, TLS, and Vogue; columnist for the Oxford Times 2012-13. My body was like a dying coral reef’ … Robert Douglas-Fairhurst. Photograph: Antonio Olmos/The Observer

Legs: I can feel my toes, but this early in the morning everything from the hips down is stubbornly refusing to do what I want it to; when I stumble downstairs to make a cup of tea in a few minutes, I will look like Frankenstein’s monster dressed in a bathrobe Despite the omen from Mother Nature, the expectation from the writer is freedom, that all is well, but the narrative flips and a diagnosis of multiple sclerosis arrives. Bladder: no alarms are going off just yet, but I will need to remain in a cat-like state of readiness all day If you do nothing, you will be auto-enrolled in our premium digital monthly subscription plan and retain complete access for 65 € per month.

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If this treatment works, nothing changes. That’s all you want’: Robert Douglas-Fairhurst at Magdalen College, Oxford. Photograph: Antonio Olmos/The Observer The unique power that stem cells have to heal existing damage in the body means that researchers have long recognised their potential to promote the repair of diseased or defective organs. Haematopoietic stem cells have been used to treat conditions such as leukaemia and lymphoma, in a process that involves severely weakening the patient’s immune and blood system through radiation or chemotherapy, and then transplanting stem cells derived from either the patient themselves or a matched donor’s bone marrow or peripheral blood. This is known as haematopoietic stem cell transplantation (HSCT). For cost savings, you can change your plan at any time online in the “Settings & Account” section. If you’d like to retain your premium access and save 20%, you can opt to pay annually at the end of the trial.

I completed my BA at the University of Cambridge in 1990, before spending a year as a Procter Visiting Fellow at Princeton University. In 1992 I started a PhD at Cambridge, which I completed in 1998. I was elected to a Junior Research Fellowship at Fitzwilliam College in 1995, and the following year I joined Emmanuel College as a Fellow in English. I moved to Magdalen College, Oxford, in 2002 as a Fellow and Tutor and CUF Lecturer in English Language and Literature. In 2015 I was elected a Fellow of the Royal Society of Literature. When the trapdoor opened for Robert Douglas-Fairhurst, he plummeted into a world of MRI scans, a disobedient body and the crushing unpredictability of a multiple sclerosis diagnosis. But, like Alice tumbling into Wonderland, his fall did something else. 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.

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The title is no accident. 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. It was a shuffling in his legs that had made Douglas-Fairhurst seek medical advice – and now a neurologist confirmed the worst. The next stage was a scan in an MRI (magnetic resonance imaging) scanner: a large plastic tube that looked a bit like a space-age tanning booth, in which I was instructed to remain absolutely still for half an hour while hidden machinery rhythmically banged and whirred around me, using strong magnetic fields and radio waves to produce images in the form of thin slices taken through my brain and spine. Then I did it again, this time after a contrast dye had been injected into my bloodstream to reveal any hidden areas of inflammation. It was a boring but painless hour or so, and for most of it I felt rather as I imagined a baby might in the womb, assuming its mother enjoyed listening to techno music at ear-splitting volume. An interesting experience, I reflected, but surely a waste of everybody’s time. Most of my teaching is in the period 1700-present; this means that I teach Victorian and Modern Literature in the first year of the undergraduate course (together with literary theory and practical criticism), Romantic period literature in the second year, and a number of special options in the final year. Research Interests What was going to happen to him? And what, if anything, could be done to prevent it? His neurologist had nothing good to tell him. MS is unpredictable. Each patient’s disease is as unique as a set of fingerprints. He might go blind, or lose his voice, or be incontinent. He might one day need to use a wheelchair, or be unable to feed himself. His thoughts might become confused. No one could say for sure. As for treatments, though individual symptoms can to a degree be managed, the neurologist could offer no pill that would slow down the progress of the disease, beyond the possibly beneficial effect of taking high doses of vitamin D. Up until this point, he had been experiencing mobility problems to which a previous doctor had responded: “Hmm”. The creeping sense of dread leading up to the next moment is offset only by the sense that the voice speaking is in total narrative control. As a reader, and a person with several chronic illnesses, I want to follow this voice.

MS isn’t uncommon in the UK. It affects around two people in every thousand (the average GP will have three or four patients with MS) and its incidence increases the further north you go – perhaps through a combination of genetic susceptibility and cloudier skies. Twenty years ago, when I worked in Edinburgh’s department of clinical neurosciences, there were few treatments: we used to give infusions of immunoglobulin, and sometimes interferon (a protein that affects signalling between white blood cells). The advice at that time was to withhold treatment until late in the progress of an episode. Though the disease remains incurable there are now various treatments that can slow its progress and diminish its severity. These days my neurology colleagues treat early and aggressively, and there are several immunomodulator drugs available that tweak the actions of the white blood cells involved in generating the plaques. He finally left hospital at Easter 2019. 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. He nods. “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. I thought: I know what this is like. I’ve rehearsed this. It turns out I’m not a soloist, after all; there’s a whole chorus of people going through the same.” Editor of the Tennyson Research Bulletin, 2002-11, and series editor of the Anthem Press series Nineteenth-Century Studies Uh oh, I say, groping it tentatively. This is a bit #MeToo. But what’s this? There’s something… stiff beneath his jeans. “Yes, I’ve started wearing knee pads,” he says. “For when I fall over.” Has he fallen over a lot lately? “No, but it means that when I do, there’s less chance I’ll end up in A&E.” This sounds so worrying and grave – and yet, he is smiling. His MS has, you see, changed his relationship with his body in ways that are – unlikely as this may sound – good as well as bad. His legs, these days, are often obdurate. But better wilful legs (and knee pads) than some other things: “The less the body works, the more you appreciate any bit that still does. My eyes, for instance, have settled down in the last couple of years, which for me is hugely significant. When I ended up in hospital with eyes that weren’t focusing properly, that was very scary. 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.”

This book is a mirror through which to examine the ways in which society has tidied up illness narratives, in this case those of people with MS, to sell, sculpt and shatter realities that only those living with the condition know. It is a powerful exploration of how to deal with loving relationships under the strain of a new serious diagnosis. The book is dedicated to “M” through whom the writer explores the complicated space of love in the face of devastating diagnosis. The first major book event of 2023 was supposed to be the publication of Prince Harry’s long-awaited (OK, opinions may vary) memoir, Spare (Penguin, January). But that was before a certain six-hour Netflix show, as a result of which it seems highly unlikely his literary effort will contain anything we haven’t heard already. So let us, having spared only the briefest of thoughts for his livid publisher, turn our attention instead to some other forthcoming memoirs, in what looks set to be a bumper year for autobiography. At the top of my list are Metamorphosis: A Life in Pieces by Robert Douglas-Fairhurst (Cape, February), a brilliant account of one man’s tilted world following a diagnosis of multiple sclerosis, and Good Girls: A Story and Study of Anorexia (4th Estate, April) by Hadley Freeman, which does what it says on the tin with all of its author’s usual wit and insight. I’m eager to read Blake Morrison’s Two Sisters (Borough Press, February), an account of sibling relationships that will be published 30 years after his classic And When Did You Last See Your Father? , while fans of another poet, Don Paterson, should look out for his memoir, Toy Fights: A Boyhood (Faber, January).

You may feel that there is already way too much politics in your life right now. But let me whisper it all the same: it seems likely that Johnson at 10: The Inside Story (Atlantic, April), Anthony Seldon’s new book, co-written with Raymond Newell, will be a gripping, if not to say utterly horrifying, read. One Boy, Two Bills and a Fry-Up by Wes Streeting, the shadow health secretary (Hodder, August), may be a sight better than the average political memoir, and I’m looking forward to This Is Not America: Why We Need a Different Conversation on Race by Tomiwa Owolade (Atlantic, June). Widening the frame, A Stranger in Your Own City: Travels in the Middle East’s Long War (Hutchinson, March) by the award-winning journalist Ghaith Abdul-Ahad has already been likened by William Dalrymple to Michael Herr’s classic Dispatches. My polemic of the year is the deeply researched and righteously angry Hags: The Demonisation of Middle-Aged Women by Victoria Smith (Fleet, March), a book that could not be more necessary (a sword and a shield) in the current climate. When I was younger, the idea that my body wouldn’t immediately do what I wanted it to would have been simply inconceivable. Now I realise that this wasn’t just the thoughtlessness of youth. It was the thoughtlessness of health. You may also opt to downgrade to Standard Digital, a robust journalistic offering that fulfils many user’s needs. Compare Standard and Premium Digital here. Autologous HSCT (aHSCT) begins with the extraction of the patient’s own stem cells and their storage in a freezer. The patient is then treated with high-dose chemotherapy and/or radiotherapy, a process designed to destroy cancerous cells that also removes the ability of the patient’s bone marrow to grow healthy new blood cells. Finally, the stored stem cells are thawed out and reintroduced into the patient’s bloodstream, where over time they replace the old tissue and allow the body to resume normal blood cell production. In effect, the body is given the help it needs to start repairing itself. 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. Scanning his bookshelves, he found a volume he’d bought on the strength of its title alone. The Journal of a Disappointed Manis a memoir, first published in 1919, by the naturalist Bruce Cummings under the pseudonym WNP Barbellion. An account of its author’s experiences of what was then known as “disseminated sclerosis” – Cummings died the year it came out, aged just 30 – it had a powerful effect on Douglas-Fairhurst, one he describes compellingly in Metamorphosis. “Reading someone like him, who goes through a worse version of what I’m going through, is a form of homeopathy,” he says. “You introduce this element of trauma into your life, but at one remove, in a way you can control. It allows you a critical vantage point, enabling you to understand the illness from the inside and the outside simultaneously.” 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

February 25, 2019. After a further two days of intensive treatment (more viciously effective drugs, more technicolour dreams, more pee than I thought possible for one body to produce), followed by a rest day, today it was finally time for my stem cells to be returned. My polemic of the year is Victoria Smith’s righteously angry Hags: The Demonisation of Middle-Aged Women On an ordinary day in 2017 a trapdoor opens in the room of an Oxford neurologist’s office and from then on, for Robert Douglas-Fairhurst, nothing is the same. In Metamorphosis: A Life in Pieces, the weather mirrors the moment as the author watches “a few dead leaves scurrying for cover”. He sits silently waiting for the words from his doctor that will change his life. Douglas-Fairhurst has called the book he has written about his illness Metamorphosis: A Life in Pieces – a reference not only to the way his MS has transformed him physically, but a nod also to Franz Kafka’s novella of 1915, in which a salesman called Gregor Samsa wakes up one morning to find that overnight he has become a giant insect. In the days and weeks after his diagnosis, when things seemed frightening and bleak, Douglas-Fairhurst often thought of poor Gregor. Would his own fate be similar? (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.) Sometimes, it felt like it would.