Pinches of Pain is my writing on my chronic pain. One example of living with chronic pain. I’ll share here links to listen to, read, and interact with chronic pain experiences from other people. I’ll keep adding to this list.
My Cuppa Jo
https://www.mycuppajo.com/about-jo/
Poetics of Pain
Bodger, K. (2020). Poetics of pain. The Pantograph Punch. https://www.pantograph-punch.com/posts/poetics-of-pain
How Does it Hurt?
De Montalk, S. (2014). How Does it Hurt? Victoria University Press.
You can also read a review by a reviewer with chronic pain and listen to a RNZ interview with Stephanie De Montalk.
“Poet and biographer Stephanie de Montalk tells the story of the chronic pain that she has lived with for more than a decade in her new book, How Does it Hurt.
The book also investigates the lives and work of three other writers who wrote about their pain – and in their stories, and her own, Stephanie de Montalk examines the paradox of writing about suffering: Where can we turn when the pain is beyond words?”
Real Stories
Psyche
Lee, E. (2012). McGill Pain Questionnaire: Shelving Objective Measures of Pain [Video, Audio & Images]. In Psyche [Exhibition]. Science Gallery Bengaluru, Bengaluru, India. https://psyche.scigalleryblr.org/exhibits?e=EX_D_PSY
“Pain is an enigmatic concept. It is obscurely wrapped up in an intricate web of perception, emotions, memories, cognition, and social interaction. It is also accompanied by experiences of anxiety, desperation, and shame—aspects that people often overlook. McGill Pain Questionnaire visually explores artist Eugenie Lee’s illness and visceral pain resulting from endometriosis and adenomyosis. By combining the McGill Pain Questionnaire, an objective pain measuring tool, with subjective lived experience, Lee has created a self-portrait installation. The exhibit reflects upon the tension between the clinical system that is ultimately removed from its subject, and the human experience that is built through layers of social interactions, emotions, and memories of lived experience.
The filing cabinets in the exhibit represent how medical systems observe, measure, and attempt to categorise patients’ subjective experiences. Each of the unopenable drawers is labelled with adjectives drawn from the questionnaire. To augment these pain adjectives, Lee incorporates viewing windows as visual metaphors and similes that become ‘evidence’ of the pain.”
Navigate and explore by clicking on the drawers.
Encountering Pain: Hearing, Seeing, Speaking
Padfield, D. & Zakrzewska, J. M. (Eds.). (2021). Encountering Pain: Hearing, Seeing, Speaking. UCL Press.
There is a free PDF version of this book.
“The volume integrates the voices of leading scientists, academics and contemporary artists with poetry and poignant personal testimonies to provide a manual for understanding the meanings of pain, for healthcare professionals, pain patients, students, academics and artists. The voices and experiences of those living with pain are central, providing tools for discussion and future research, shifting register between creative, academic and personal contributions from diverse cultures and weaving them together to offer new understanding, knowledge and hope.”
Struggling to be me with chronic pain
Toye, F. et al., (2013). Struggling to be me with chronic pain [Video]. Youtube. https://www.youtube.com/watch?v=FPpu7dXJFR
“This is a short film based on a synthesis of 77 qualitative studies exploring the experience of over a thousand adults with chronic musculoskeletal pain. The script is drawn from peoples’ own words about what it is like to live with chronic pain and is performed by an actor.”
Pinches of Pain 