Metamorphosis: A Life in Pieces

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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 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. A darkly comic and moving reflection on what it means to be human in a world where nothing is certain, from the award-winning Oxford professor. His treatment was intended to reset his immune system. But it recalibrated so many other things besides: his relationships with other people, and with his surroundings. He has, he believes, become a kinder, more empathic person, and like the writer Dennis Potter, who famously thought, as he was dying of cancer, that the apple blossom outside his window was “ the whitest, frothiest, blossomest blossom there could ever be”, he finds the world to be so much more vivid now. “When I came out of hospital there was this blooming, buzzing confusion that I write about, and I don’t think that’s ever gone away. I’m more sharply aware of everything. I’m reborn.” He laughs. “When I finally lose my legs, maybe I’ll lie in bed hating the world. I’ll probably be deeply bitter. But for now…”

The idea that someone who has been forced to adjust nearly every aspect of their lives to suit the demands of their disease should be grateful may sound strange. Yet I cannot help thinking that for all I have lost in recent years, there are also some things I have gained, such as a better sense of proportion, and maybe even a better sense of humour. (Perhaps deep down they are the same thing.) Every day feels like a new adventure in the world of the possible. 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. 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.

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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.

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’Pembroke College, Cambridge: BA (1990), MA (1994), PhD (1998); Procter Visiting Fellow, Princeton University, 1991-1992; Junior Research Fellow, Fitzwilliam College, Cambridge, 1995-1996; Fellow and Tutor, Emmanuel College, Cambridge, 1996-2002; Fellow and Tutor, Magdalen College, Oxford, 2002-present. In 2015 I was elected a Fellow of the Royal Society of Literature. Teaching Joan’s MRI scan confirmed the diagnosis: several patches or ‘plaques’ of demyelination were visible in her brain and spinal cord. These plaques tend to become scarred over time, a process called ‘sclerosis’, visible to pathologists at postmortem as grey-pink blobs in the brain. The first neurologist to describe it was Jean-MartinCharcot of the Salpêtrière in Paris, who in 1868 called it ‘sclérose en plaques disseminées’. In German the disease became known as ‘Multiple Sklerose’ and in English ‘disseminated sclerosis’. By the 1950s the anglophone medical community had settled on ‘multiple sclerosis’.