Refusing to be silenced: Claiming chaos narrative

In the Wounded Storyteller, Arthur Frank proposed three types of narrative told by people attempting to reclaim their voice and the body made alien by illness – restitution, quest, and chaos. Restitution narrative has dominated media; in it, the patient simply experiences the disease and is presented passively, and the medical community is presented as having agency. In quest narrative, the experiencer becomes their own hero; their suffering brings knowledge which is then shared with the audience who bears witness and is charged with learning the lesson the experience conveys. In quest narrative, while speakers have agency that they are often robbed of in the restitution narrative, they are saddled with the imperative to inspire others. This makes the narrator a hero, but we need to ask, where does the imperative come from that demands that the narrator become a hero and an example for others? If that imperative comes from the audience and market demands, we need to recognize how they are dictating the manner in which stories are told, determining which are selected by publishers and media venues to be disseminated. The third type, the chaos narrative, is rarely encountered by audiences because the chaos narrative is usually erased. This “anti-narrative” can only be lived and cannot be told. The individual living with chronic physical or mental illness or a disability, who cannot be stoic and turn their story into a quest narrative, is rendered mute. Since restitution narrative is also unavailable to these individuals, their stories are left unspoken or unwritten. Their stories have largely been controlled by external agents. Failure to meet normate expectations has meant rejection. How prescriptive norms arose that delegitimatized the authority of chaos narrative must be understood if authentic chaos narrative is to be spoken and written.

Maintenance of non-pharmacological strategies 6 months after patients with chronic obstructive pulmonary disease (COPD) attend a breathlessness service: a qualitative study

ObjectivesThis study aimed to explore the degree to which non-pharmacological strategies for chronic breathlessness are sustained 6 months after completing a breathlessness service in patients with chronic obstructive pulmonary disease (COPD), and patient perceptions regarding the need for ongoing support.DesignA qualitative approach was taken using semistructured telephone interviews. Thematic analysis used an integrative approach.SettingThe Westmead Breathlessness Service (WBS) trains patients with COPD to self-manage chronic breathlessness over an 8-week programme with multidisciplinary input and home visits.ParticipantsPatients with moderate to very severe COPD who had completed the WBS programme 6 months earlier.ResultsThirty-two participants were interviewed. One or more breathlessness self-management strategies were sustained by most participants, including breathing techniques (n=22; 69%), the hand-held fan (n=17; 53%), planning/pacing and exercise (n=14 for each; 44%) and strategic use of a four-wheeled walker (n=8; 25%). However, almost a third of participants appeared to be struggling psychologically, including some who had refused psychological intervention. A ‘chaos narrative’ appeared to be prevalent, and many participants had poor recall of the programme.ConclusionsSelf-management strategies taught by breathlessness services to patients with moderate to very severe COPD have potential to be sustained 6 months later. However, psychological coping may be more challenging to maintain. Research is needed on ways to improve resilience to set-backs and uptake of psychological interventions, as well as to understand and address the implications of poor recall for self-management.Trial registration numberACTRN12617000499381

Chaos Narrative and Experientiality in the Graphic Memoir

This article contributes to research on illness narratives. It revisits Arthur Frank’s notion of the chaos narrative and argues in favour of supplementing it with the concept of tellability, and with Monika Fludernik and David Herman’s postclassical narratological approaches to the definition of narrative that foreground experientiality and what it’s like. Furthermore, it is argued that tellability is recuperated at the discourse level in literary representations of the chaos narrative. Frank argues, that the chaos narrative cannot be represented, but in this article, the case is made that literature can mimick the chaos. It is suggested, to label this particular chaos narrative: The mediated chaos narrative. This is demonstrated in a reading of Danish cartoonist Thomas H. Nøhr’s graphic memoir entitled Cirkus, which chronicles his encounter with the Danish health care system after suffering from stress, depression and severe burnout. The graphic memoir can experiment with the affordances of its multimodality to support the focus on narrative experientiality and to draw attention to issues of social justice. To render the chaos of the experience, Nøhr examines how the affordances of graphic memoir enables one to experiment with narratological building blocks such as the distinction between the narrating I and the experiencing I and with Gérard Genette’s three categories of time: order, duration, and frequency.

Narrating Chaos: Theresa Hak Kyung Cha’s "DICTEE" and Korean American Fragmentary Writings

In The Wounded Storyteller: Body, Illness, and Ethics, sociologist Arthur Frank uses narratology to typologize the stories people tell about illness. Next to teleological stories of survival, which “reassure the listener that however bad things look, a happy ending is possible”, Frank discusses “the chaos narrative” in which “events are told as the storyteller experiences life: without sequence or discernible causality” 97. While the storytellers discussed by Frank mostly suffer from physical ailments and traumas, I would argue that the chaotic mode of telling also characterizes texts that explore other kinds of traumas, including those related to displacement and shaming experienced by several generations of Koreans and Americans of Korean descent. Drawing on affect studies, I analyze Theresa Hak Kyung Cha’s DICTEE 1982 alongside two essays, by Grace M. Cho and Hosu Kim published in The Affective Turn: Theorizing the Social 2007, all of which use the collage form to challenge the expectation that “in life as in story, one event [leads] to another” Frank 97. The speech act is foregrounded in all three texts; it is de-naturalized, deformed, shown as a recitation of prescribed language, and repeatedly interrupted. Nonetheless, as Frank suggests, “the physical act becomes the ethical act” because “to tell one’s life is to assume responsibility for that life.” It also allows others to “begin to speak through that story” xx–xxi.

‘To give an outsider an idea of what it could be like’: A case study of the creative representation of hearing voices

This paper reports on a case study which aims to recreate the hearing voices symptom in schizophrenia. The case study was submitted for a co-curricular module at King’s College London by a first-year undergraduate Music student, Bethany James, and was created using the web application, Mahara. The core of the case study consists of a soundscape of both everyday and unusual sounds, in conjunction with an original musical composition. The paper describes the case study and discusses it using chaos narrative as an analytical lens. The paper argues that the case study (‘A Beautiful Mind – Artefact’) effectively evokes the hearing voices symptom, conveying a lucid sense of the experience to non-sufferers and thus potentially creating use value for clinicians and care workers.

“I’m Over It”: Survivor Narratives AfterWoman-to-Woman Partner Abuse

This article uses qualitative data gathered through semi-structured, in-depth interviews with 40 women in the United Kingdom who identified as having experienced abuse (physical, sexual, emotional, and/or financial) in a previous same-sex relationship. Participants’ narratives of “life after abuse” are examined through two lenses; the first contributing to understandings of the varied and enduring material, psychological and relational impacts of abuse, and the second offering insights into the cultural values that shape such narratives. Applying Arthur Frank’s (1995) illness narratives, this article argues that narratives emphasizing recovery (“restitution”) or transformation (“quest”) are culturally privileged over a “chaos” narrative. It also proposes a fourth narrative of “active recovery.” The article concludes that recovery from partner abuse is neither a linear process nor one guaranteed to reach an end point. Further research is needed to understand how to better support survivors of partner abuse to move toward recovery.