Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

Women Surviving Hemorrhagic Stroke: Narratives of Meaning

Stroke, whether hemorrhagic or ischemic,1 carries the potential to disable survivors on physical, cognitive, and emotional levels. Although hemorrhagic stroke is not rare in children and young adults, there is little information available that is relevant to the lives of relatively young survivors of hemorrhagic stroke. Popular discourse does not distinguish between hemorrhagic and ischemic stroke, and understands stroke as an experience of old age. Within this context, young survivors of hemorrhagic stroke are an anomaly, and their experiences cannot be easily inserted or made intelligible within that discourse. What is needed is an alternative discourse , which allows for a recognition that the traumatic event of stroke can and does happen at any age. To challenge the notion that stroke is an experience of old age, and to create a contextualized understanding of what it can be like to survive a stroke at a relatively young age, I have been collecting and analyzing the narratives of women who survived a hemorrhagic stroke before the age of fifty and were left with residual, invisible disabilities. I also have been gathering data through in-depth and open-ended interviews with a convenience sample of women, as well as analyzing other relevant narratives written by interview participants. The open-ended interviews focus on issues such as the experience of disability, sense of self, relations with others , and how these women make sense of the experience of stroke.2 Despite the multi-faceted nature of my data, the focus of this essay is on what participants had to say as they reflected on the significance of their strokes. Relying on excerpts from the narratives of six women (including myself) that were collected at an early stage of the research,3 I discuss 181 sharon dale stone Women Surviving Hemorrhagic Stroke Narratives of Meaning 182 representing the subject Table 1 Summary Overview of Participant Characteristics Age at Residence Marital Status Current Current Employment Current Stroke-related Stroke at Stroke at Stroke Marital Status Education at Stroke Employment Disabilities J 11 Quebec Lived with Common-law, PhD N/A University •Right-sided weakness parents same-sex professor •Poor balance •Slight aphasia •Cognitive difficulties •Easily fatigued B 17 Ontario Lived with Recently MSW N/A Child welfare •Left-sided weakness parents married worker •Easily fatigued D 24 New York Single, lived Recently Law Lawyer, Lawyer, •Left-sided weakness City with boyfriend divorced degree municipal municipal •Easily fatigued government government K 25 Oregon Common-law, Common-law, BA; graduate Videographer Videographer •Right-sided weakness same-sex same-sex student for a university for a university •Easily fatigued •Aphasia L 31 Ontario Common-law, Common-law, High school Bookstore chain Mostly •Left-sided weakness opposite sex opposite sex publicist unemployed; •Poor balance sometimes does •Easily fatigued contract work as a publicist S 36 Ontario Married Married High school Bank customer Unemployed; •Poor balance service manager has applied for •Cognitive difficulties disability pension •No sense of smell or taste •Easily fatigued how identity can be affected by the traumatic experience of hemorrhagic stroke. Each of the six stories in this essay were narrated more than three years post-stroke, so that each woman interviewed had learned to accommodate for residual disabilities and was able to reflect upon post-stroke experiences. My discussion of their stories is not meant to suggest that they are representative of the larger population of women survivors of hemorrhagic stroke. Indeed, in some respects these research participants are relatively homogeneous. They are a privileged group in terms of skin colour, previous and/or current employment, and in terms of access to medical knowledge and supportive social networks. They are also an exceptionally articulate and thoughtful group of women. Nevertheless, an analysis of their narratives is suggestive of issues and themes that may well be found in the narratives of others. Table 1 provides a brief overview of participant characteristics. Age as a Prominent Theme in the Narratives Looking at these narratives as a whole, it is striking to note how significant age is in affecting not only initial diagnosis and medical treatment, but also the meaning that participants subsequently attributed to the stroke. The three participants aged twenty-four and under at the time of their stroke were initially misdiagnosed with maladies ranging from flu to hysteria , even though each of them presented classic signs of hemorrhagic stroke. The three participants between the ages of twenty-five and thirtysix , however, were correctly diagnosed...