K-K Loke’s poetry project chronicles the author’s experiences living with chronic neuropathic pain, spasm, disability, and illness. But these poems do not dwell on suffering; Loke explores her deeply personal themes by emphasising her personal triumph over pain. (Zanobia Frost)
One afternoon in February, 2004, my life changed as a result of a biopsy surgery on an MRI-detected spinal cord tumour. The effects were drastic and irreversible: since then, I have been living with disability, chronic neuropathic pain, and spasm — in addition to my illness. I face these challenges upfront. Over the years, I have triumphed over pain and suffering.
Neuropathic pain is very different from nociceptive pain, which is caused by damage to tissue — e.g., a bruise, a sprain, a cut, a burn, or a bone fracture (i.e. that which aches or throbs) — and is likely to be relieved by traditional pain killers within a short time. Neuropathic pain is caused by damage to the nerves — e.g., by a brain or spinal cord tumour or a spinal cord injury; it has a burning, electric shock or numbing quality, and requires other types of medications on a long-term basis.
Pain is personal, private and subjective. Neuropathic pain is unique; it is especially difficult for anyone to understand neuropathic pain without actual experience. I have found metaphor and poetic language helps my carers, family, friends and healthcare practitioners to understand what chronic neuropathic pain is like and how it affects me. I started using imagery to capture my experiences in writing in 2006. Since then I have written nearly 100 poems.
Here I present a selection of these descriptions, in more or less chronological order as they were written and/or as the episodes took place.
1. My main objective is to share my experiences with fellow sufferers, and to show non-sufferers and relevant healthcare professionals and practitioners what these symptoms and conditions are like from the perspective of a sufferer (patient, client).
I hope what I present here will give some consolation and inspiration to chronic neuropathic pain sufferers, and will help carers and other non-sufferers to understand and empathise with how a sufferer feels and perceives chronic neuropathic pain.
I also hope that the material presented here will provide descriptions of chronic neuropathic pain from the perspective of a sufferer/patient that may help relevant medical professionals and healthcare providers (e.g., general practitioners, pain specialists and managers, rehabilitation specialists, physiotherapists, exercise physiologists, occupational therapists, podiatrists, nurses, carers, social workers, psychologists, neurosurgeons, neurologists, etc.) to help their patients or clients to achieve more relief and triumph over their chronic pain.
I would be happy for the material presented here to be used, with due acknowledgement, for educational purposes, in the training of relevant professional healthcare providers.
2. My other objective is academic. As a (retired) linguist who used different types of authentic text and text analysis in my teaching, I have set myself the challenge of experimenting with the use of poetry to describe my chronic neuropathic pain, spasm, disability and illness, as well as how I manage them. I do so by using the familiar (imagery, metaphor) to describe the unfamiliar to most people (chronic neuropathic pain) in simple poetry.
As far as I know, poetry has been used to describe illnesses, physical and mental pains generally, but not so much chronic neuropathic pain per se.
I would like to receive feedback and comments from the readers, especially from poets and linguists, on how successful I have been in my experiment, specifically; and on how useful poetry is or can be for the description of chronic neuropathic pain, generally.
What is presented in this website is merely a description of my experiences of chronic neuropathic pain, spasm, disability and illness, and a record of my own attempts and strategies to cope with and manage them. I make no attempt to prescribe or advise others with similar conditions on what to do or not do with their own illness, chronic pains, spasm or disability.
The development of this website has been made possible by a grant from Access Arts, Inc., Brisbane, Queensland, Australia, for the provision of a poetry mentor (Zenobia Frost, May 2013 – Jan. 2015) and a web mentor (Nathan Sibthorpe, Dec. 2014 – Feb. 2015). I am grateful for the professional advice, assistance, and encouragement I have received from Timothy Brown, current Project Coordinator; Belinda Locke, former Project Coordinator; Kirstin Sillitoe, former Development and Marketing Coordinator; and Zane Trow, former Professional Development Program Coordinator.
I especially thank both of my mentors for their professional, constructive, and engaged mentoring and patient training; for setting up this website for me and helping me to use it confidently; and for their advice, support, encouragement, and friendship. Poet Zenobia Frost’s editing, comments and critique of my work and her training, guidance, and suggestions have carved a novice poet out of me. Multimedia designer and performance maker Nathan Sibthorpe’s guidance, assistance, suggestions, and web demonstrations and training have helped me to be more confident in using the web. Without their training, assistance and guidance, I would not have had the courage to e-publish my work. However, all faults remain solely mine.
I am grateful to Donna Dyson for her initial encouragement and suggestion for e-publishing; poets Graham Nunn and Beverley George for their suggestions and recommendations; Kiley Preshouse of the Spinal Outreach Team for her initiation, suggestion, and encouragement to approach Access Arts; and Raymond So for his advice on and assistance in IT matters.
.© 2015 KKLokePhD
Drastic & Irreversible. Lava Flow at Krafla, 1984. Photo by Michael Ryan, US Geographical Survey. In public domain. via
Tree in Sunset. Ne liqenin e Batllaves. Photo by Bessi. CC AS-A 3.0 Unported License, via – http://commons.wikimedia.org/wiki/File:Tree_in_sunset.jpg
Cox’s_Bazar_Sunset. Photo by Tareq Hasan. CC AS-A 4.0 International License. via – http://commons.wikimedia.org/wiki/File:Cox%27s_Bazar_Sunset.JPG