Description
I would like to consider some challenges that storytellers face when their narrative is questioned either on the basis of its content (what is being said), or its form (how it is being told), particularly in relation to making sense of illness and health. I will offer a narrative using poetry and paintings that develops narratives previously presented (Spiers, 2021a, 2021b). My narratives problematize a materialist and normativist medical understanding of the notions of illness, well-being and what counts as a ‘normal’ spiritual experience. I will share a story of experiences that have been questioned and disbelieved. The narrative follows a journey of my experiences as a person with epilepsy, offering a reflexive engagement with chronic illness and an eventual understanding of the exceptional experiences that I have during my seizures, resulting in an understanding of them as being part of a profound spiritual journey. Through a series of paintings, poetic and writings, I invite others into my lived, embodied experience of epilepsy, into the feelings and the complexity of living with an invisible condition that moulds and defines my life experience and interaction with the world. I consider others’ stigma from my own position of wellness. I question whether narratives of illness are limited by those who tell their story, or those who ‘hear’ them. The reflections, poems, prose and paintings I share have been written over the last seven years, whilst I have been researching my PhD into spiritual experiences in epilepsy. A large part of my research has been inter-relational, presenting autoethnographic material about spiritual experiences in epilepsy to a wider academic audience. The personal material in this narrative includes a reflection of others' responses to my experience, to being a storyteller, and to the idea that exceptional human experiences are real and not hallucinations.| Period | 16 Jun 2023 |
|---|---|
| Held at | Tampere University, Finland |
| Degree of Recognition | International |