In this autoethnography, I share an extension of an evocative narrative using poetry and painting that problematizes the material and normativist medical understanding of notions of wellbeing and what counts as a ‘normal’ spiritual experience. The autoethnography follows a journey of my experiences as a person with epilepsy, from initial diagnosis, offering a reflexive engagement with illness and an eventual understanding of the exceptional experiences I have during epilepsy seizures, resulting in an understanding of them as being part of a profound spiritual journey. My narrative invites 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. In my poetry, I explore what it feels like to be a citizen of this other place, and the stigma associated with it from the position of wellness. The poems I share have been written over the last four 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 ecstatic experiences in epilepsy to a wider audience. The poems include a reflection of others' responses to the material, to autoethnography, and to the idea that exceptional human experiences are real and not hallucinations.
|Title of host publication||Storying the Self|
|Editors||Jess Moriarty, Ross Adamson|
|Publication status||Accepted/In press - 7 Jul 2020|
|Name||Performance and communities|
Publisher allows AAM to be made available 12 months after publication.