Literature and Medicine II

21 Throughout the writing of my own quest narrative I drew on several published examples of illness narratives dealing with stroke (Newborn; Berger; Sherr Klein) while rejecting others (Leaney; Veith). The authors that I followed conceptually saw their strokes as the first stage of the hero’s journey as according to Joseph Campbell; departure. According to Campbell, all narratives adopt three main stages beginning with departure where the hero leaves the ordinary world to search for a solution or elixir. In all cases mentioned the call to departure is having a stroke. Before finding the elixir in the second stage (initiation) the hero encounters trials. In the illness narrative these trials take the form of suffering, and illness. The elixir, which the hero finds in the initiation stage, is in the form of knowledge gained. This basic narrative structure corresponds with Frank’s framework for illness narrative as he ultimately suggests the “crucial test of a story might be the sort of person it shapes” (Frank, The Wounded Storyteller 157). The hero returns to the world transformed with new strength in the third stage. The hero of the illness narrative “returns as one who is no longer ill but remains marked by illness” (Frank, The Wounded Storyteller 118). The illness has changed the hero, given him/ her a new perspective. Healing brings about a new perspective (DeSalvo 3).

22 The quest narrative follows the three major stages of Joseph Campbell’s description of the hero’s journey; departure, initiation and return. My call to departure was having a stroke. My initiation was trials, in the form of suffering and illness, enabling me to gain knowledge (elixir):

Yeah I was amazed that I was doing this all by myself. Yeah I wasn’t prepared for it and I remember thinking 1st time I walked I’m gunna be so happy and then when I actually did I didn’t realise I was until towards the very end and if you see the smile on my face I think that’s the only way I can possibly describe it there’s no words. It’s still an ongoing thing it’s not like you walk one day and you walk forever you have to still work at it. ( With Both Hands recorded on 15 August 2000)

23 In the third stage, the hero of the illness narrative “returns as one who is no longer ill but remains marked by illness” (Frank, The Wounded Storyteller 118). I returned in the third stage no longer ill but forever influenced by my trials. I was changed by illness, given a new perspective. The quest story changed my relationship with my pain. When I began this journey I couldn’t understand why I was chosen to take it: Why couldn’t this have happened to a stronger person? Unpublished Journal May 1997 I now know that I am this “stronger person” I wrote about. I would not have chosen this way, and I often wonder how I travelled it, but I would never change it either:

It’s a huge part of my life, it’s everything to me—that this has happened to me and that I got through it and things are pretty normal and that I can pretty much live as I would have before. It’s just, there is a weakness. You could say it’s like this hasn’t happened to me, but it has. That’s what’s made me who I am now, and I am grateful for that, I am happy for that. It changed how I felt about things. (With Both Hands recorded on 15 August 2000)

This entry demonstrates the importance of not choosing one narrative structure above another, but keeping all of them. All three types are clear in this entry. Restitution: when I claim that I can live as I would have been able to before. Chaos: when I continue to dissociate myself from my body “there is a weakness.” Quest: when I recognise the knowledge I have gained. These types of experience are different from the mainstream belief in health and body stability yet cannot be attributed wholly to a disabling society. In the next section, I explore the relevance of the social model of disability to my own changing identity and offer some reflections on how illness can expand the relevance of this model.

Illness Narratives and the Social Model of Disability

24 People who are seriously ill or who experience disability as a result of illness do not fit neatly into cultural and social theories, often being positioned as the real limitation from which to escape. For example, women, gay men and lesbians and indigenous people have historically experienced a medical pathologisation that has contributed to their social exclusion. Disability activists likewise refuse any association with illness, particularly within the social model of disability which argues that most, if not all, of the problems experienced by people with disability can be solved via social manipulation. Under the paradigm of the social model of disability, impairment becomes disability because society is structured for the able bodied majority (Oliver 22):

The more I read about the social model of disability, the more I began to question my own identity. I became absorbed in the debate as it ran through every aspect of my life, often seeping into practical aspects of my research. Why, for example, were the disability studies books placed on the top shelf of my university’s library? Why wouldn’t my university’s insurance policy cover me for overseas research travel? Why did delivery trucks park in the disabled parking bays? These disabling situations that have been left up to me as an individual to deal with, have nothing to do with my impairment. Disability is an ideological reality. (Ellis, “You Look Normal to Me” 8 June 2004)

25 As a way to maintain political power, illness and the effects of impairment have been played down under this model of empowerment (Shakespeare and Watson 5). While this strategy was integral in raising the self esteem and political awareness of the disability community, this model requires a revision to allow for the inclusion of other groups experiencing social exclusion. As Shakespeare and Watson argue, “the denial of difference is as big a problem for disability studies […] as it was for feminism” (11). They draw on the work of Linda Birke in feminist studies to suggest the body does affect the lives of people who have impairments and to deny this is to deny a huge part of the lived experience of these people. Illness and impairment are important aspects of the personal identity of many people with disability:

I cut my long hair pretty short [and] I feel like I've reclaimed myself and have stopped trying to chase the person I was when I was 18—before I had a stroke and was forced to shave my hair off for an operation. (Unpublished Livejournal blog 24 January 2006)

This short blog appears in my Livejournal alongside longer entries that document my social life, search for an academic job, publications strategy, teaching workload and pop culture quizzes which I describe as my “journey of self-discovery.” This blog entry acknowledges that long hair is a socially constructed marker of femininity, yet recognises the significant impact losing my hair had on my sense of self and the loss of control I felt at that moment. There is also much evidence throughout this blog that although I am no longer ill, I remain marked by my illness as Frank predicts happens to people who experience and recover from serious illness:

Yesterday I was reading an article that said people who drink lots of coffee are more likely to have heart attacks. This was not good news but I thought I’d be able to screen it out of my consciousness but then I kept reading and it went on to say coffee also increases levels of the stress hormone homocystine, which can lead to strokes. Considering I've had a very very high level of homocystine which did in fact lead to stroke I felt I should pay attention. My sister Amanda tells me that I already knew this—just chose to forget. Maybe I should get a homocystine check. So today I have had one cup of coffee and one decaf. I feel my productivity slipping in very extreme ways. (Unpublished Livejournal blog 13 March 2006)