In reading more about illness narratives from the perspective of medical humanities, I find myself struggling a little. Lampress & Braithwaite (2016) talk about teaching patients to write illness narratives. They compare illness narratives to that of the fictional hero journey, specifically outlining the standard trajectory of the narrative:
In the narrative arc of the fictional hero journey, the center character undergoes three epic transitions: he or she is compelled to leave the comfort of everyday life in search of resolution to a crisis, or attainment of a critical goal; he or she then faces a series of extraordinary events involving frustration, challenge and change involving a special, strange world and finally; a resolution is achieved, or the goal is obtained, and the character returns, though forever changed, to the ordinary world that was the starting point of the story. (p.1)
I realize when I read this that it is in part why I struggle with writing my journey in book format. Although there is a clear beginning (diagnosis) and perhaps a clear middle (active treatment), there is no clear ending. Illness narratives don’t necessarily follow such a pretty recipe for a story – they are raw and they are real – they represent authentic experiences, not fictional ones. Not all illness narratives make ‘good’ stories. That does not make them any less valuable or useful – they are just more real.
In The Wounded Storyteller, Frank (1995) divides illness narratives into different types of stories. He too looks at the text of book form pathographies and classifies them as restitution narratives, chaos narratives, or quest narratives. I blogged in more depth about it here: http://rjh.goingeast.ca/2016/01/19/a-bio-of-sorts-autopathography/). Reading this I found myself struggling to figure out which narrative type my story fell into. Where does my ‘book’ fit within the different types of narrative.
Interestingly, earlier in the book Frank mentions that illness narratives are not your typical stories. They are “wrecked because its present is not what the past was supposed to lead up to, and the future is scarcely thinkable.” (Frank, 1995, p.55). This leads to where my thinking is going regarding blogs as living pathographies. The snippets of reality that are shared on illness blogs are stories of real life – they are sometimes ‘broken’ from a narrative perspective. They do not fit nice and neatly into literary boxes.
I don’t agree with Lamprell & Braithwaite when they say that “the appropriation of the hero journey model as a narrative structure for patients facilitates narrative competence in wrangling complex, deeply-felt experiences across silos of care over periods of time” (2016, p.3). I actually worry that the need to make illness narratives fit into nice pretty boxes puts an unrealistic expectation on the patient experience. I should not need to feel like my ‘story’ has a beginning, middle, and end and that those things follow nicely along with the recipe of what makes a good fictional narrative. Patients should be encouraged to tell their stories as they are lived – not as someone with healthy privilege wants them to say it. There should not be a need to conform in order to make for a good ‘story’, rather the experience should be allowed to be living experience, and a raw experience, which better reflects the reality of living with critical illness.
Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics (Second ed.). Chicago and London: The University of Chicago Press.
Lamprell, K., & Braithwaite, J. (2016). Patients as story-tellers of healthcare journeys. Medical Humanities, medhum-2016. doi:10.1136/medhum