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.
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.
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.
Literature becomes a ladder through which the writer climbs upwards to feel, see and feel seen. Instantly, the story from which the title of this book came, appears. The writer’s affinity with Kafka’s Metamorphosis offers the reader an opportunity to see the newly diagnosed man dissecting his feelings about this future. It speaks fundamentally about something all those diagnosed with chronic or terminal illness feel.
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“It was hard not to read it as a personal warning,” he writes. “I was going to take up tennis again; I was going to fulfil a childhood dream by driving across America from coast to coast ... now it appeared that all I had to look forward to was a time in which I would be first cared for, neglected and finally abandoned.”
The sense of loss, and powerlessness, will resonate with anyone who has gone through a healthcare crisis like this, and it provides a lesson for those who love and care for them. As a person with several chronic illnesses, I recognise this narrative all too well: will I be a burden? How will this play out? Will I have my dignity or not? Will, in the end, anyone care? In Kafka’s story the support gradually drips away from Gregor and he is eventually discarded “with the rest of the household rubbish by the maid”. The image is devastating and demanding and, whether intended or not, it challenges the reader to confront the reality of ableism head on and in this way this book is as much a work of activism as it is a work of creative nonfiction.
Of his own body, the author says: “My body was like a dying coral reef.” But in this book all problems inspire literary solutions. The writing on display here from the Oxford professor is surely influenced by the fact he has published widely on 19th-century literature and written books such as Victorian Afterlives and Becoming Dickens. The importance of interrogating the presumed story becomes a theme and the possibilities that present when one decides to claim their narrative pave a way into the future.
The Journal of a Disappointed Man by Bruce Cummings offers a lens through which the writer can commune with another author who had MS more than a century ago. He dissects and deliberates over it in an effort to extract some greater truth about the mutual experience they simultaneously inhabit. Here is a window to counter the trapdoor. We learn that Cummings himself did not know he had MS until he was rejected from the army and received the news via a letter he opened. The excavation of his diaries offers a window to the author, a way of seeing and measuring while trying to make sense of his new reality.
It would have been easy for this Oxford English professor to write a simple book that explores his experience of MS. It would have done well and garnered words like “courageous” and “brave” but this approach is far more interesting. This book is about the life of an artist seeking meaning and motivation in a world that others him and oscillates between witnessing and isolating those that it doesn’t understand.
In many ways, this is a work of cultural criticism as much as a memoir. It’s a book that everyone should read. The writing possesses a commitment to literary nonfiction that delights and dares the reader onwards. An analysis of MS in literature and movies reveals the disconnect between reality and fiction. “Every plot appears to be crudely bolted together, every character’s life runs along a battered set of tracks. That’s very different to the real life experience of living with MS in which you wake up each morning unsure if today your legs will fail to respond to instructions,” he writes.
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.
This book finds its spine by weaving a through line between the literary and the personal. It presents an evocative and educational cartography of illness through the eyes of an artist and provides a caution to those in the kingdom of the well. “It is one of the definitions of a good book that it can seem to speak for us as well as to us,” Douglas-Fairhurst writes about Cummings’ diary. He could have been writing about his own work.
