A Quest Through Chaos: My Narrative of Illness and Recovery — Page 4:
16 Seriously ill people need to tell stories: to their doctors, to their family, to their friends, to themselves. The story I was telling my friends in 1997 was a combination of the chaos and restitution narratives (explored in the next section). But as yet, it didn’t have a purpose:
I can’t move my left side. But my face has gone back to normal, but they had to shave half my head because part of my skull has been removed, as my brain was swelling too much and I would have died otherwise. I used to wish that I had just died, because I feel that my recovery is taking too long and that no one understood. But in reality, my doctors reckon that I’m getting better really fast. Well my arm is moving a bit more. I can basically move my thumb whenever I want but my fingers aren’t back yet. My foot isn’t either. And I’m really stressing about that. So yeah, I’m pissed off that this has happened to me. (Unpublished Letter May 1997)
This letter begins to link feelings with detail, but still demonstrates dissociation with myself. When this link is made “the ill person gradually realises a sense of purpose, [and] the idea that illness has been a journey emerges” (Frank, The Wounded Storyteller 117). This letter (which I never sent) reveals that I was not seeing a future for myself yet and was relying heavily on doctors’ opinions, even to the point where I was discounting my own. I was having trouble admitting that I might never fully recover the parts of my body that were paralysed. Admitting the severity of my impairment to other people was worse because I felt an intense cultural pressure to tell a restitution narrative that would reassure everyone that I was, and would be, okay:
Constantly people ask me ‘how are you?’ How do I answer that? I can’t move properly or much really but health wise I feel normal—not sick or anything like that. Also people wish me well for a speedy recovery. While this would be great a full recovery is what I hope for. (Unpublished Journal June 1997)
Restitution Narratives
17 In the restitution narrative, restoring health is the basis of the story line. They are like a paracetamol commercial—“yesterday I was healthy, today I’m sick and tomorrow I’ll be healthy again” (Frank, The Wounded Storyteller 77). Our society welcomes restitution narratives, encourages them because we need to believe that medicine can cure everything. The restitution narrative is favoured by people who are ill because new identities, that acutely remind individuals of their difference, are resisted.
18 During the period of my physiotherapy treatment I stopped using my journal to vent and instead started documenting what I saw as important steps towards my recovery of becoming that girl I “used to be”:
11 April 1997 Started physio
17 April 1997 Walked with two physios
05 May 1997 Walked with one physio
20 May 1997 Walked alone
24 June 1997 Walked alone 20 minutes
13 July 1997 Didn’t use wheelchair all weekend
21 March 2000 I am able (bodied). I am independent. There is nothing I can’t achieve
Although documenting what I experienced, these short entries in no way explain what I was experiencing or what is really involved in learning to walk again. The only time I did venture further than just one sentence was the day I walked alone for the very first time and even then all I said was: The feeling of euphoria I experienced at that moment is describable only by the smile that was my face. (Unpublished Journal May 1997) These entries provide evidence for DeSalvo’s argument that “the implication of the restitution narrative is that our bodies can be restored to what they were like before illness struck” (198). Although discounted by disability theorists (Barnes 23; Oliver 32), the restitution narrative is nevertheless crucial to recovery because it encourages people who are ill come to terms with the world of “health” and their place in it (Radley 98). Although initially resisted, following illness or injury, individuals must redefine themselves. By reworking the restitution narrative’s claim that things can return to how they were before, the quest narrative acknowledges that everything has changed.
19 The restitution story is favoured by society because it provides reassurance in the myth of body stability. However, many people with illness and disability do not fit into a restitution narrative. Although I sought to believe in restorative health via the restitution narrative, ultimately I acknowledged that illness was an experience and identity that I needed to embrace and via the quest narrative I’m able to explore an alternative way of being (well).
Quest Narratives
20 The quest story allows the ill person to give testimony and reflect on their changing identity in a culture of health. Several years after my stroke I described having my stroke without adopting the chaos structure:
I was watching t.v., and also talking on the phone and then I started feeling dizzy. I wasn’t mad at my friend who I was talking to or anything; it was a normal time, normal day. So I said to her I have to get off the phone because I feel really dizzy. […] I ran up to my bedroom and started talking really funny and just threw up everywhere. Then I had this explosion in my head, a really bad headache, worse than I’ve ever had before. I didn’t think this was as bad as it was. I just thought it was this really weird headache that I was having and didn’t realise that I was having a stroke. But I realized something was going to be different, from that moment but I didn’t really realise how and how badly. I was really confused the whole time and I went and took panadol as well. It was more the pain of having it, even though it’s not supposed to hurt. That’s crap, because it does. And vomiting, I don’t know how normal that is but that’s what happened to me. That might have had something to do with me choking on panadol. Because I thought I’ll take panadol and be okay. (With Both Hands recorded on 15 August 2000)
About the same event, there are significant differences in the retelling. In my chaos narrative I described events leading up to the stroke without actually writing about the moment itself, although I have always been able to remember it. In the later description, I also noted that I realised something was going to be different, without realising what would change. The quest had begun, as I was beginning to accept my stroke was a calling, that my life would take a new direction.