In Franz Kafka’s 1915 novella "The Metamorphosis," we see the grim reality of a sudden change that turns protagonist Gregor Samsa overnight into a giant, unwieldy insect and the struggles he has from basic movement to the failing empathy from his family and neighbors, who eventually and quite literally throw him away like garbage.
For decades, the book has been critiqued in many ways, with some seeing it as a symbol of the breakdown of a father-son relationship and others seeing it as a testament of the internal struggle Kafka always struggled with as a writer who continually doubted his abilities.
But now, University of Oxford English Professor Robert Douglas-Fairhurst, Ph.D., has cleverly used Kafka’s story as an apt metaphor for disease. He co-opted the novella’s title for his new book detailing his own battle with multiple sclerosis, while also lending the M and S of "Metamorphosis" as a shorthand for this condition.
In the opening pages, Douglas-Fairhurst likens his diagnosis to a trapdoor being opened beneath your feet. Sometimes you can swerve catastrophe, but, “sometimes, we are unlucky enough to be standing on the trap door when the lever is pulled […] and then, we plummet.”
Douglas-Fairhurst’s trapdoor was in an Oxford neurologist’s consulting room, where he was given his MS diagnosis in 2017.
It’s a debilitating, lifelong condition, the origins of which are poorly understood but that typically affects younger and middle-aged adults in places with low sunlight levels; it can affect the brain and spinal cord, causing a wide range of potential symptoms including problems with vision, arm or leg movement, sensation or balance.
There are several types of MS, but typically it can come in waves, with worsening symptoms later receding only to come back. Some people with MS have mild symptoms, while others can be severely disabled because of their disease. There are many drugs on the market for the condition, but none are curative.
After the rather straight, no-frills diagnosis from his neurologist, Douglas-Fairhurst spends hours in the dark hole of the trapdoor, fervently Googling MS and finding an array of deterioration in his future and, ominously, discovers that every image attached to every MS article is of someone in a wheelchair.
“It is a disease of perhaps,” he writes. Perhaps he will go blind, perhaps he will lose his mental facilities or his capacity to walk.
The latter is what brought him into the neurologist’s office in the first place; after going for a walk, he found his legs started to resemble “an old man shuffling in his slippers,” the first sign that his immune system had started to attack itself and one that continued to worsen after his diagnosis.
Douglas-Fairhurst’s work is part autobiography and part biography of one of the first books to really deal with MS in this way, which was from naturalist and writer Bruce Cummings. His 1919 book, "The Journal of a Disappointed Man," talks openly about a disease, which we now know was MS, that crippled and swiftly killed him at just 30 years old.
Douglas-Fairhurst found the unread version of Cummings' book on his bookshelf while contemplating his own tome on the subject and leans heavily into its work as a parallel to his own life. But where Cummings had little medical help, Douglas-Fairhurst describes the continued trips to neurologists and a MRI screening that came with students who openly discussed, in medical-ese, the exact nature of his disabilities as he struggled to walk in a straight line in front of them.
There is a sense of a literary flourish: Douglas-Fairhurst is a highly respected published author and is a professor of English at one of the world’s most renowned and oldest universities, but, if anything, his literary talent adds not a superfluous layer but simply more texture.
Douglas-Fairhurst finds peace after his diagnosis much as he did before: Through stories, and telling this very personal one, which is just the first volume.
When disease is spoken about publicly, it is often done so by pharma companies via a marketing agency or through a government-backed campaign. It is now more common to read it being blogged about or, more recently, discussed in bite-size videos on social media.
These are very linear stories; everyone wants their three acts and a satisfying conclusion, but the lived experience is much bumpier. Douglas-Fairhurst’s book goes deeper and portrays a modern-day telling of using Susan Sontag’s so-called dual passport, where we move from the kingdom of the well to the kingdom of the sick in a way that is unflinching but also invites the reader to really understand an individual’s story of disease.