The Being in some body: An Autoethnographic Account of Being and Becoming-in-the-world with Multiple Sclerosis

Embodiment and experience as a nurse, wife, mother, researcher, and educator living and working with Multiple Sclerosis (MS) is the focus of this study. MS is a chronic de-generative neurological illness. It was confirmed in my being in 1998. Through my chosen approach of autoethnography as method, and on the basis of my work into and on my ‘self’ and ‘being’, I invite a radical review of the professional organization and medical(ised) treatment of those with MS and with similar chronic conditions. My aims are to generate research that goes beyond the passive construal of the body typical of medical research to a process through which embodiment can be understood not only as representation of the body but as a significant influencer of a semblance of actuality or verisimilitude. In this work I place my experience in conversation with scholarly voices critiquing embodied experiences of self and being in the world as heuristic inquiry. The intertwining relationships between self, body, and work as mutual organisational relationships are examined through the development of a self-reflexive praxis, in which embodiment, experience, and meaning-making resonate through autoethnography as both topic of study and constituent of the research experience. By drawing on first person narrative accounts of my experiences since the confirmed diagnosis of MS, I make visible some of the seemingly invisible effects of living and working with this degenerative illness. I chronicle and analyse my engagement with a profession whose calling is to care for those, who like me, live with chronic health conditions that may periodically present as acute or increasingly debilitating experiences. My voice is clearly present in this text, bestowing an authorial voice from my body to re-view, re-veal, re-tell highly personal accounts specifically focusing on how I, the researcher as writer, have explored the impacts of a confirmed diagnosis of MS on my life and the lives of those I care about. Through this research, I have explored and enhanced an integrated sense of self deeply affected by the often-prevailing medicalised change in my identity as I Carrie, who has MS. I challenge the separation of mind/body, of conscious/unconscious, of emotion/cognition, and of conceptual/actual as typical and still dominant in medical specialist approaches to meaning making. I also question the institutionalised forms of professionalism that sees the medical encounter as a supreme example of surveillance: the doctor questions and investigates - the patient is the passive object. I propose that meaning resides in embodied experience. I tell of my experiences that seem pertinent to the creation of my best possible life with MS. Yet these experiences seem undervalued or even absent from my diagnosis and treatment in various aspects of the ‘helping role’ and of ‘professional care’ I was able to access: I was now being viewed as a disabled person. No abled-bodied person would tolerate this! I wanted to have some control and rights over my changed life. The best way forward was to merge my old and now new ways of being to regain some control and dignity. (Personal Journal, 1998). In this research, I focus on everyday performances by stepping consciously and creatively onto the stage as a life-long member of MS. I tell of how, initially from frustration with the medical professionals but increasingly from a source of creative self-direction, I explore the transformation of my body through the performance of reconstructing illness. As a consequence of my attention to embodied change, I do not view my perceived physical, psychological, spiritual, artistic, and thus ‘social’ worlds merely as discrete categories of experience commonly isolated by empiricists. It appears to me that this attention I give myself is restoring and empowering this fully alert and engaged ‘Carrie who flourishes’ - even with MS. The research approach brings personal experience, reflections, and insights to the fore as heuristic inquiry to join a growing genre of research that embraces subjective matter: the lived experience of research and the insight of living research as inquiry. This inquiry contributes to modes of research that are intentionally transformational. I contribute to the development of research methods, research voicing, and ways of writing qualitative research. I connect my research on, from, and with self to the disciplines of organisational learning, management, and teaching. My study has implications for those who like me host MS or similar chronic conditions and for the supporting families, volunteers and communities. In particular, this research has implications for those professionals who provide a diagnosis, prognosis, treatment, and care for those who must live with a chronic condition of any kind. I hope it encourages all people entwined in such stories as mine, to seek life-enhancing communication as the primary responsibility of care for each other