A Quest Through Chaos: My Narrative of Illness and Recovery — Page 3:
11 The need to turn these experiences of illness into stories is not uncommon: “people tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others—each must create his own—but rather to witness the experience of reconstructing one’s own map” (Frank, The Wounded Storyteller 17). I felt the need to tell my story:
I felt a responsibility for testimony, to give it voice, to share my story for use so that it was not wasted. The quest story changed my relationship with my pain. I preferred to use it rather than regret it. (With Both Hands Directors’ Statement November 2000)
12 Using rather than regretting my illness involved giving voice to my experience via narrative and I began with the chaos narrative, perhaps the most uncomfortable and least heard of the three structures Frank describes.
Chaos Narratives
13 When serious physical illness or injury happen in a culture that takes health for granted, it is a shock that makes the body unfamiliar to the individual and thus brings about a total re-imagination of the ‘self’ (Nettelbeck 153). People often retell their stories by venting their feelings through the chaos narrative. In the chaos story illness stretches on forever as time has no sequence, and the writer does not associate with what s/he is writing. There is no future in sight. It is as though the story is being forced to go faster in order to catch the suffering in words (Frank, The Wounded Storyteller 102):
I’m trying desperately to be the girl I used to be but there was nothing wrong with her. She wasn’t trapped in a body that doesn’t work. Sometimes I think I did die and this is actually hell. I’m so scared I might not get better but how can I tell myself this, let alone other people? Is this really a life wasted? No one really understands what I’m going through, but how does feeling sorry for myself help? Now I’m living in a rehab hospital, depending on people I don’t know to wash, dress, and toilet me. Sometimes it gets me down that everyone in this hospital is so much older than me. I’m only somewhat comforted when told that younger people have a higher chance of recovery, because I’m also constantly reminded how abnormal it is for an 18-year-old to have a stroke in the first place. I think about what I am missing out on, all the time. (Unpublished Journal April 1997)
14 In my chaos narrative, recovery is already deemed unachievable because I have no other way of thinking about myself in the world. My present self was so different to the past, that I was experiencing myself as an “other” (Rimmon-Kenan). I have no agency; other people “do” everything to and for me. I feel out of place, perhaps already dead, a wasted life. I’m unable to receive comfort. It’s not comforting that younger people have a higher chance of recovery when I know younger have a lower chance of having a stroke in the first place, and it’s already happened to me.
15 In the chaos narrative, I have dissociated from my body, abandoned identification with myself. Through a lack of reflection these stories take on an ‘and then and then’ structure:
I’m only 18, I didn’t realise 18-year-olds could have strokes; I thought that only happened to 500-year-olds. When it happened I was talking on the phone to a friend. I started to develop a headache and apparently my voice became softer and I began slurring my words and just hung up. I then took two panadol and began throwing up violently. I began looking around my bedroom for something to throw up in, as I felt too weak to walk to the toilet. It was then that my mother and two sisters found me and tried to lift me but couldn’t, my dad came home and told me to put my weight on my leg and I told him that it already was. I was then driven to hospital in an ambulance. (Unpublished Journal April 1997)