Narrating stroke: the life-writing and fiction of brain damage

Abstract

Cerebro-vascular events are, after neurodegenerative disorders, the most frequent cause of brain damage that leads to the patient's impaired cognitive and/or bodily functioning. While the medico-scientific discourse related to stroke suggests that patients experience a change in identity and self-concept, the present analysis focuses on the patients' personal presentation of their experience to, first, highlight their way of thinking and feeling and, second, contribute to the clinician's actual understanding of the meaning of stroke within the life of each individual. As stroke 'victims' necessarily speak from the position of having undergone very abrupt degeneration followed by being confronted with a gradual relocation within their 'recovery', the present study addresses how narrative texts describe the condition, that is, the insult itself and its impairing consequences for body and mind, and how patients portray themselves within their illness. Furthermore, given that all illness narrative must remain non-representative, especially when exploring conditions that impair cognitive abilities, autobiographically inspired fiction, equally, contributes to neuroscientific perspectives on embodiment: it gives further insight into how the condition is perceived and alerts us to those aspects of the experience that are understood as particularly momentous.

Historic review: select chapters of a history of stroke

“…What about patients suffering from stroke? Granted they are somehow part of the parcel, we have to broaden our historical horizon and consult their diaries, autobiographies and other source material [6]. Not an easy task: There are few so called ego-documents from the pre-1800 period and we are dealing with a condition including aphasic and agraphic disturbances.…”

The Poetics and Politics of Alzheimer’s Disease Life-Writing

“…28 On Kafkaesque metaphors in relation to the patient's recovery after stroke, see: Martina Zimmermann, 'Narrating stroke: the life-writing and fiction of brain damage ', Medical Humanities, 38 (2012), pp. 73-77, p. 74 (Zimmermann 2012). background (3). 29 This text-picture portrayal suggests that Spohr perceives of the doctor as exercising his authority from a professional distance and with a mentality removed from the patient's as much as the caregiver's needs.…”

The Effects of a Dance and Music-Based Intervention on Parkinson’s Patients’ Well-Being: An Interview Study

“…To be able to study participants’ beliefs and emotional and cognitive responses, we decided to rely on their free autobiographical narrations, as derived from open-ended interviews. The literature is consistent in highlighting that autobiographical narration is a preferred practice for re-elaboration and sense-making of the individual’s own experience, particularly for patients coping with medical diseases or interventions [ 44 , 45 ]. Nonetheless, to our knowledge, no research has been conducted using self-narratives about interventions aimed at empowering the well-being of patients affected by Parkinson’s disease.…”