The idea that life is a journey made up of different stages is one that has appeared across time, in different cultures and media. It is a concept that is ingrained in our collective psyches, and cannot be escaped, being present in the way we choose to live, think, and speak about our lives. In the context of illness and disability however, it is a guiding metaphor that is in desperate need of being problematized. In order to do this, over the course of a number of monthly blog posts I will critically apply the concept of the journey to my own life with chronic illness, my research career thus far, and in particular my involvement in the rising subgenre and interdisciplinary field of study Graphic Medicine, which looks at the interactions between the medium of comics and healthcare. As a framework for this I will employ both the comparative mythologist Joseph Campbell’s model of The Hero’s Journey and the sociologist Arthur Frank’s illness narrative category of The Quest Narrative, which itself owes a huge debt to Campbell.
Campbell referred to The Hero’s Journey as being the ‘monomyth’ (23), the singular guiding story of humanity, with all other stories essentially being a transformation of this original one. This journey consists of the three main stages of Departure, Initiation, and Return, broken down into seventeen smaller stages. At its most basic level this journey can be described as follows: after receiving what Campbell calls ‘the call to adventure’ (49), the hero moves from the known to an unknown and dangerous realm where they must face and overcome many trials, and return back to society with ‘the power to bestow boons on his fellow man’ (23).
Frank’s quest narrative is essentially the hero’s journey transformed into an illness story, where there is something to be gained from becoming ill, a truth or power inaccessible to those who are not thus marked. Frank saw the quest narrative as counteracting the silencing regimes of modern medicine, with its dominant story of recovery, compliance, and cure. For Frank the call to adventure in the quest narrative is often figured as ‘interruption’ (56) the appearance of unusual symptoms, an accident, event, or sudden diagnosis. As such the majority of illness narratives and works of Graphic Medicine tend to focus on illness and disability in the mid to late years, with a preference for stories of recovery or assimilation, rather than the political, social, and personal implications of lifelong disease.
My own story differs from this in that I was diagnosed at birth with Cystic Fibrosis, a chronic degenerative illness of the lungs and pancreas. As I was lucky enough to experience a relatively pain-free childhood until the age of ten however, it was only in my early to late teens that I began to experience a period of awakening with regards to the implications of my illness that certainly could be figured in terms of Campbell’s first stage. The only problem was that this new found understanding of my limited mortality (the average life expectancy of someone with CF in the UK is currently 41) didn’t really feel like an adventure, and I didn’t really feel like much of a hero. Whilst Campbell and Frank were both strong believers in the freedom and power of their models as blueprints to live by, the potential risk was that the actual lived experience of illness and disability would frequently fail to live up to them.
My own awakening then, was one that was brought about by a healthy dose of skepticism and dissatisfaction. My initial rejection of my illness at this stage manifested itself in many forms. I was desperate to be treated like I wasn’t ill, meaning I would often use humor as a defense mechanism and a distraction, and in an attempt to forge an identity for myself that didn’t relate to my CF. In distancing myself from the reality of my condition however, my denial would often lead to the neglecting of my treatment. Because of this rejection, I also found the image of my illness that was presented in the media and by the Cystic Fibrosis Trust to be deeply dissatisfactory and not in any way reflective of what I considered to be my own complex thoughts and desires. Because of the lower mortality rate and the obvious need to pull people’s purse strings as well as heart strings, the dominant image of CF put forward by this charity was of cute sick children who were spoken of in patronizing tones as being “brave” and “inspiring”. In these images the voice and opinions of the child would frequently get lost, and there was no real room for those who had grown older, uglier, and unwise with CF.
This process then is somewhat akin to the second stage of Campbell’s journey ‘the refusal of the call’ (59), although the specific flavor of my refusal contained within the qualities of a particular subtype of Frank’s quest narrative that he refers to as the ‘manifesto’ (114), which often has larger social and political, rather than purely personal goals. It was my self-important belief at the time that I knew a truth about illness, and in particular the way in which it was represented and viewed, that no one else did. Despite the potential for this belief to become implicated in the very limiting models that I was trying to critique and escape, it allowed me an early experiment with the language, concerns, and methods of medical humanities. More specifically it sharpened a disability centered perspective in me long before I had even come to see myself as being disabled. This experiment would open up many doors, allowing me (in Campbell’s terms) to ‘cross the first threshold’ (77) into academia, into comics, into Graphic Medicine, and into a productive kind of skepticism with all of these things. But first I had to meet my own equivalent of Campbell’s ‘supernatural aid’ (69), a guide to living with illness who came in the rather unusual form of a man nailing his penis to a plank of wood….
To be continued next month.
References & further reading:
Campbell, Joseph. The Hero With A Thousand Faces. 1993. Fontana Press, London.
Czerweic, MK, Green, Michael J, Myers, Kimberly R, Smith, Scott T, Squier, Susan Merril, and Williams, Ian eds. Graphic Medicine Manifesto. 2015. Penn State Press, University Park, PA.
Diedrich, Lisa. Treatments: Language, Politics, and the Culture of Illness. 2007. University Of Minnesota Press, Minneapolis.
Frank, Arthur. At the Will of the Body: Reflections on illness. 2002. Mariner Books, New York.
Frank, Arthur. ‘Enacting Illness Stories: When, What, and Why’ Stories and Their Limits: Narrative Approaches to Bioethics. pp.31-49. Nelson, Hinde Lindemann. 2013. Routledge, London.
Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. 1997. University of Chicago Press. Chicago.