I grew up in a house where diagnoses were part of the daily conversations as my mother was a nurse and storytelling was a must because my father was a reader.
My favorite bedtime story was Little Red Riding Hood, but the fact that I was asking my father to tell it to me every night, made him imagine new versions of it for me – in which the protagonists would sometimes end up even in a hospital, on the surgical table, in order to save the little girl from the belly of the wolf. So, slowly, medicine became a part of the stories I was hearing and later reading.
When I got to school I was sometimes using medical terms my classmates had never heard of and that gave me the feeling that I had the access key to another world: myalgia, post-operative, X-ray, diabetes, these words among others were building a fascinating alternative coded reality for me. I liked looking at the world through the microscope!
Later, as I began to read, I was intrigued by the contrast between the ample, dynamic, and complex descriptions regarding diseases in literary works, like the one on plague in A Journal of the Plague Year by Daniel Defoe, and the strict, codified, pattern shaped profile of diseases from the medical books. I was mainly captivated by the different modes of living with the same medical condition, in contrast with the unidimensional, static, abstract lists of symptoms, syndromes, and adverse reactions. There were so many different stories attached to only one diagnosis. It seemed that the medical profile was just the preamble of complementary stories.
Being a reader and being fascinated by medicine only led to one thing: I became a Doctor of Letters. With, of course, a thesis on plague representations in literature and their relation to the scientific paradigm and to the structure patterns.
But I didn’t really feel like I was properly taking care of the letters, as a Doctor of Letters is supposed to do. I was just reading them, analyzing them, making them work together in stories.
And then I stumbled upon illness narratives (stories told by a person regarding their personal experience of illness either as a patient, a friend of a patient or as a medical practitioner), narrative medicine (»medicine practiced with the narrative competencies to recognize, absorb, interpret, and be moved by the stories of illness« [1] , and the medical humanities (which could be defined as an interdisciplinary field which acknowledges the importance of humanities, social sciences, and the arts in the medical profession that promotes a wide range of collaborations between these fields in order to increase the quality of the medical care).
That encounter was a turning point, because it made me renegotiate my way of thinking regarding stories about illness, the importance of narrative education in the medical environment, and the need to listen to and to care for the stories told about traumatic moments.
So these days you will find me talking to chronic patients, artists who are suffering – or who have suffered from – different medical conditions, and medical practitioners from a couple of Stuttgart’s hospitals about illness experiences: the stories, the meanings, the hopes, the strengths and the weaknesses. All the talks I’ve had so far have been highly captivating. I’ve never heard the same story told twice. It is always a different story, even if it is the same events narrated by a different person, and sometimes a person might even tell the same story differently.
So these days I am practicing a sort of medicine on this micro-macro metamorphic organism called story.
Readings from anthropology, sociology, narrative medicine, cultural studies, narrative therapy, literary theory, and comparative literature help a lot.
I feel like I’ve embarked on a new voyage.
My plan is to try to redraw the map of illness narratives: beyond any borders of stigmatization, victimization or biases – all using art as a canvas.
- Jump Up Charon, Rita. »Narrative medicine: attention, representation, affiliation.« Narrative 13.3, 2005: 261-270.