A Demon's Whispers, a story inspired by Damon Thorley's epilepsy
Damon is a 26 year old author, who recently published his debut book 'A Demon's Whispers', where the main antagonist is heavily based from his experience of living with epilepsy. In this blog, he tells us about his life with epilepsy, everything from dealing with bullying in school, long-term physical injuries, and depression.
Before I was diagnosed my first seizure happened in the January of 2009, shortly after I joined secondary school. This was my first time experiencing one, which startled my mother who called the ambulance where I spent some time in hospital recovering.
In the December of 2009 shortly before I was officially diagnosed with epilepsy one month later, I had my second seizure. This seizure has always been particularly memorable to me as it showcased to my entire school what I was going through.
Struggles of living with epilepsy as a schoolboy
In a morning class just after it began, I let out a scream before falling to the floor, having never had a conscious seizure in my life the remainder of my day after I awoke in hospital surrounded by my mother, a teacher and doctors was spent trying to get them to tell me why they were behaving so strangely around me. Finally, a few days later I got it out of my mother that it was concern that I had stopped breathing during this seizure, and it took me a week of bedrest to recover enough to return to school.
From the age of twelve onward my school life was subjected to constant bullying and mockery. There was someone who felt the need to stand in front of me and fake a seizure with a demented smirk on the face. By the time I sat my exams I felt extremely reluctant to go to school as few teachers seemed bothered by what they saw.
No medication I have taken has ever controlled my seizures efficiently enough to be considered successful as I have been allergic to or had severe side effects from almost whatever drug I have tried. At best I can say the severity of my seizures has decreased though I live constantly in fear of a flare up. Severe seizures happen to me once a year on average and cripple me for months at a time. I have suffered from a slipped disk, multiple bruised ribs as well as four severe mid-spine fractures due to these flare ups.
The physical struggles of living with epilepsy
These crippling results of my epilepsy often leave me feeling depressed as they take so long to heal that it is closer to the next incident that it is away. Every month a seizure I have aggravates my long-term injuries, the most prominent of which is not one of the above but instead a result of neglect of care whilst I was still under my paediatric neurology team.
My paediatric neurologists were often told by me that after a seizure my right shoulder would spend days with a strange sensation or aching feeling deep inside of it to which they always dismissed as an unimportant and irrelevant detail of my epilepsy. In my first year of college (2014) however my right shoulder joint finally gave in to the aching I had felt for the previous five years and dislocated. As it turned out the fact that every seizure, I ever had in my life involved me falling on my right side had ground the bone inside the joint into dust meaning that the joint had to have a screw surgically added to it to prevent constant dislocations.
Pursuing my passions, and writing my book
Outside of my epilepsy, writing has been a passion of mine ever since I was a child. When I was younger I would often try to write short stories on my computer or invent characters in my head and just imagine their story as my mind created it. As I got older, though I explored other pursuits I never lost my passion for creativity as I would spend each day during my walks to and from school plotting ideas in my head.
When I started to write my debut book A Demon’s Whispers in late 2021 the main antagonist drew a great deal of inspiration from my experience living with epilepsy...
The most major contributing factor was the hallucinations I have suffered across the various medications I have taken. Visual, auditory and tactile hallucinations have been a part of my life for a long time. The various extremities to which these have messed with my ability to trust my own senses I have tried to convey in the story.