Western philosophy has a tendency to place mind over matter. But the body sometimes confronts us with philosophical riddles that cannot always be solved rationally. Consider, for instance, Captain Ahab, who has lost his leg in the hunt for the great white whale, Moby Dick. One day, the carpenter who tailors the captain’s peg leg out of whalebone, asks if it is true that a man never entirely loses the feeling of his lost limb. Ahab answers: “Look, put thy live leg here in the place where mine once was; so now, here is only one distinct leg to the eye, yet two to the soul. Where thou feelest tingling life; there, exactly there, there to a hair, do I” (Melville: 513). Ahab’s description of the persistent and complete (to a hair) sensation in his lost leg is a fine description of phantom limb syndrome, from before the medical term existed.
We need names for the medical acknowledgement of illness, disease, and disorder. This doesn’t mean that without those names, people lack the symptoms and suffering that constitute their complaints. Sadly, in the doctor’s clinic there is not enough time or space to give full attention to the inexplicable, the unknown or unheard of: the clinical diagnostic system is structured in such a way that one can reiterate only what is known already. Medical ‘discoveries’ therefore are not only done in the field of medicine: we need spaces that operate in a paradigm of radical imagination to allow certain ideas to exist. In my own research, I am interested in the speculative dimension provided by fiction and writing: its conscious play with language; its appeal to our imagination and emphatic abilities, can prove to be quite literally mind-opening, not just to the individual reader but to communities of reading as well.
My PhD research takes its origins in my interest for the American Civil War-era short story, ‘The Case of George Dedlow‘, written by the Philadelphian physician Silas Weir Mitchell and published anonymously in The Atlantic Monthly in 1866. Mitchell, who was in charge of the 400-bed Turner’s Lane Military Hospital for injuries of the nerves, had observed that many convalescing soldiers who had lost a limb in battle, talked about ongoing sensations in amputated legs and arms. Collectively, they presented a ‘body’ of coherent symptoms, which enabled Mitchell to do groundbreaking research on nerve injuries caused by amputation. ‘The Case of George Dedlow’ presents the fictitious case of a quadruple amputee who is briefly reunited with his lost legs in a spiritual séance. For his story, Mitchell combined a form of medical case writing with that of the curious case genre, popularized by news presses of the day (think for instance about Edgar Allan Poe’s famous hoax scientific cases). This way, he brought the condition of Civil War amputees into popular view. In fact, and to his own surprise, the story was met, not with disbelief, but with public support and curiosity for George Dedlow, who in fact did not exist. Unintentionally, Dedlow’s pair of fantasy ghost legs became the prototype for what Mitchell would eventually coin as phantom limbs – the medical term still in use today for ‘the perception of sensations, often including pain, in an arm or leg long after the limb has been amputated’ (see: Medicinenet).
Mitchell’s story provides a wealth of information that is contextual to the discursive formation of the phantom limb. Not only does it give insight into the actual phenomenon, but it also places the medical interest into these phantoms in a specific historical time and culture, where the many losses caused by the Civil War were made visually and materially manifest in various ways. Dedlow’s legs, for instance, appear to the spirit medium in coded raps: they turn out to be the serial numbers of his actual amputated legs, preserved in the collection of the Army Medical Museum – an institution that was founded during the Civil War and that indeed collected specimen of, and information about, severed limbs for medical research interest.
Plaster casts of arm amputations performed on William Godfroy and Andrew Shaw, artifacts produced for the collection of the Army Medical Museum (Image: Otis Historical Archives. National Museum of Health & Medicine)
Phantom limb syndrome is a striking example of an invisible condition that cannot be understood without imagination, be it literally, by giving an image to the a-visual phenomenon, or as a strategy to try and work with the unquantifiable or immeasurable phantom. The mirror box therapy (developed by neuroscientist V.S. Ramachandran), in which patients trick their phantom limb into a visual stimulus for the brain, using a mirror reflection of the intact limb, reminds us that technology (such as fMRI brain imaging) cannot entirely replace or rule out the relevance of our human faculty for imagination.
My academic background is in art and literature studies, and as a writer I am interested in writing as a medical ‘instrument’ – a form of medical inquiry into the mysteries that our bodies produce and present, whether from the professional or patient’s point of view. (And who is the professional in these cases? A significant question.) This kind of literature – that I’d like to call ‘body writing’ – can range from the science fiction or fantasy literature (Mitchell’s ‘Dedlow’, Edgar Allan Poe, Mary Shelley) that speculate on medical questions and ethics; to case study writing (Freud, Alexander de Luria, Oliver Sacks); to autobiography and illness memoir (for instance, Virginia Woolf, Hervé Guibert, Susan Sontag, Paul Kalanithi).
Two years into my PhD trajectory, my research unexpectedly turned personal. Already at the beginning of my PhD, I had been diagnosed with NSIP, a rare auto-immune disorder causing fibrosis (scarring) of the lungs, complicating oxygen diffusion from the alveoli to the blood. Unfortunately my response to medical treatment wasn’t as hoped for, and so it turned out that I was literally running out of breath. This whole situation was, in a way, stranger than fiction: for my research I had been looking at subjects – cases – of invisible or inexplicable illness, and now suddenly ‘I’ had walked into the picture, messing up my plans. As my condition worsened I had to take leave from work indefinitely and, so it turned out, wait for the only form of treatment left – a lung transplant.
The fact that I’m writing here on the Pulse network about my PhD research, means that I’ve had the extreme fortune to have received a pair of suitable donor lungs whose transplant – infinite gratitude to Team Erasmus in Rotterdam!!! – has been successful. With this renewed breath, passed on from my donor to me in March 2017, I woke up, not only to a new life of relative health but also to a range of existential questions that are both confusing and exciting to explore. My interest in phantom limbs and its ‘treatment’ in culture paved the way for me to think – and write – about my donor lungs: in addition to my academic research, I am also writing a novel about this philosophically adventurous continuation of life with a donor organ, a riddle all its own…
In my capacity as co-coordinator of the Pulse network, I hope to connect with fellow researchers with a cross-disciplinary interest in medical health. I look forward to meeting you at one of Pulse’s future events! You can contact me directly at email@example.com