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.
There are two types of MS, he was told: relapsing remitting and (more serious) primary progressive. He had the latter, with no effective treatment, it seemed, let alone a cure: “My body was like a dying coral reef.” 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. His body was uncoupling from him. He’d entered the kingdom of the sick.
Fear of immobility, then death, was unavoidable. Less predictably, he began asking himself “Who are you?” 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”). When he came out as gay, he’d been direct with people – and now he was again, about MS. “Don’t stop inviting me to things,” he asked friends in a long message on Facebook, “don’t even ask me how I am.” His partner, M, set the right example: rather than maunder or end the relationship, he lightened the air with jokes.
Douglas-Fairhurst’s bookishness is as essential to the story as his MS. 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. For MS, they offered “narrative medicine”. As well as the medical texts he read, he became fascinated by novels and plays in which serious illness plays a major part. At times he felt like Winnie in Beckett’s Happy Days, buried up to her neck; or like Prufrock (“how his arms and legs are thin”); or like Robinson Crusoe (“No rest all night, violent pains in my head”). There was no shortage of authors and characters as beleaguered as him.
Above all, he discovered the brilliant naturalist Bruce Cummings, whose book The Journal of a Disappointed Man, published under the pseudonym WNP Barbellion in 1919, becomes a parallel text here, with generous quotations from its diary entries and a heartfelt account of the author’s life. Cummings, who died aged 30, didn’t give the name of his illness but the symptoms are unmistakably those of MS. And though his book of diary entries charts depths to which Douglas-Fairhurst doesn’t sink, it’s also gloriously life-affirming, “embracing the sheer multiplicity of the world”. Above all, it shows the value of keeping a diary when you’re ill, not just as a means of tracking symptoms but of finding order as your life is falling apart.
At some point in the search to slow his deterioration, Douglas-Fairhurst came across autologous haematopoietic stem cell transplantation, traditionally a cancer treatment by which stem cells are extracted and stored in a freezer, then thawed and replaced after the patient has had chemotherapy. In MS, an autoimmune disease, the aim is to wipe out the immune system before rebuilding it. A series of boxes had to be ticked – involving MRI scans and a lumbar puncture – before he was accepted for treatment. It meant a six-month wait, during which time he developed problems with speech and speed of thought. He kept himself going with masses of reading – everything from Wodehouse and Dickens to King Lear. Finally, as recorded here mostly in journal entries, his arduous treatment began, much of it spent in an antiseptic bubble and with various setbacks along the way. Once home, he still couldn’t hope for a cure but for “small improvements, step by step”.
The book ought to be gruelling and it doesn’t shrink from candour about the trials of MS – the pain, anxiety, shame and self-pity, and the thoughts of ending them at Dignitas. But it’s also level-headed and informative: ignorant himself about MS at the outset, Douglas-Fairhurst clues us in to the terminology and treatment, with everything from neutropenia to the chilling “expanded disability status scale” (a one-10 measure of dysfunction), clearly explained. 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. He ends it optimistically in Oxford on a bright May morning, four years on from his diagnosis and two years from his stem cell transplant, as he sets out on a mile-long walk to a hilltop vista, far from confident he’ll make it without his legs buckling but determined to give it a go.
• Metamorphosis is published by Jonathan Cape (£16.99). To support the Guardian and the Observer buy a copy at guardianbookshop.com. Delivery charges may apply.
