Friday, July 19

Lives in pieces

Last time I saw my friend Robert Douglas-Fairhurst was in England, in the northern spring four years ago. Suddenly diagnosed with multiple sclerosis in his late forties, Robert had undergone a protracted and complicated medical process in an effort to stall the degeneration. He was managing well, although visibly somewhat fragile, and was having to maintain some physical distance from people in a way that, in May 2019, was not yet familiar.

Now Robert has published a book about his experience, with the title Metamorphosis: A Life in Pieces (Jonathan Cape, 2023). This references primarily Franz Kafka’s novella from 1915, about a man who finds himself transformed into a beetle, and heads inexorably through pain and starvation to death. This all sounds very macabre, of course, but the weird behaviour of Robert’s body was what brought on the MS diagnosis, and then forced him to rethink his relationship with it. His book, however, is mostly not macabre: indeed his longterm male partner – whose commitment Robert understandably worried about, given what MS can bring with it – not only remained loyal, but approached their dual predicament with some humour. 

The book has the author revisit his life, starting with the bodily changes of his childhood and puberty, and his playing dress-ups so as to express his desire to be an actor. This ambition was scotched when he took one recognised British route to theatrical stardom – enrolling at Cambridge University– only to have to acknowledge his lack of potential compared with that of his contemporaries Rachel Weisz and Tom Hollander. So Robert went on to become an English lit academic, focusing especially on fiction. He has a special fascination with Charles Dickens, and his Becoming Dickens (2011) explored Dickens’s career as if we did not already know that the writer was going to be a runaway success by his mid-twenties, rather than, like another real-life ambitious young writer of Dickens’s generation, face starvation. Hence Robert became adept at thinking, why this outcome, why not this one? He also writes very lucidly, unlike many academics, and sometimes amusingly (the British holidaymakers in Spain whom he recalls from his childhood, for example, ‘drifted from bar to bar in a haze of aftershave and vague aggression’, 21).

More generally, Metamorphosis looks at how people use stories to make sense of their experience, especially in times of stress and difficulty. They can project themselves into other lives, into other possible perspectives. Reading can act as an escape from problems: Robert finds Peter Pan, as a narrative about a boy who never grows up, especially consoling. But literature also exercises our imaginations and stimulates social awareness and empathy. If the story is ‘challenging but not impenetrable’, then reading it becomes ‘a workout for the brain’: the process ‘helps to strengthen neural pathways and create new ones that allow for more complex forms of thinking’ (170).

Robert finds that there’s a genre of fiction that actually deals with MS; the patterns there, unfortunately, become tediously predictable, focusing as they do either on misfortune and gruesome degeneration, or on rescue through love. But his real discovery is the diary of someone who suffered about a hundred years ago from what was then called ‘disseminated sclerosis’. This was The Journal of a Disappointed Man and its sequel My Last Diary, the work of ‘W. N. P. Barbellion’, or Bruce Cummings. He was a naturalist with particular interests in birds and insects who, after some struggle, got to work at the British Museum; he also married and fathered a daughter. But the disease was cruel (‘disappointed man’ is an understatement), ending his career, putting a stop to his mobility and eventually to his writing, before he died at thirty in 1919. Cummings certainly felt short-changed; producing his journal for as long as he could, nonetheless, gave him a sense that his life was not totally ‘in pieces’, and that it would offer him some kind of posthumous existence. Cummings could still enjoy the aspects of the natural world that had always fascinated him. Near the end he can say: ‘I put my whole being into the immediate ticking hour with its sixty minutes of precious life, and catching each pearl drop as it fell’ (240).

The century between Robert Douglas-Fairhurst’s life and that of Bruce Cummings has meant that the contemporary sufferer from MS, who has been inspired by the earlier writer (he starts his own journal), also has a more hopeful prognosis. Robert was accepted for a course of stem-cell treatment (aHSCT) that involved harvesting his own cells while getting rid of those that were damaging his system, putting him through chemotherapy, and reintroducing his own cells so they could grow into healthy ones. As his descriptions make clear, this is a painful and disorientating experience, as his body responds sometimes bewilderingly at each stage of the process (and a lot of pee eventuates…). He must too be protected in every possible way from infection, so that he is very isolated. 

Moreover, the kind of MS Robert has (primary progressive, with no remission periods) means that decline can be forestalled but not reversed. The trajectory for every MS patient is different – there is actually no fixed or predictable story. I am reminded of Sam Neill’s recent memoir, Did I Ever Tell You This?, written in the face of serious illness which might be cured by an innovative treatment, but also ending with the success or otherwise of this still uncertain.

Robert calls his last chapter ‘A Walk in the Park’, which on the surface seems strange. But what he means is that having learnt a lot from his reading, he now has to get outside, away from books, and away from speculation about narratives. He must mobilise himself – to take, quite literally, a walk in the park…