Featured Artist | Guy Stoker
Featured Artist | Guy W. Stoker
In celebration of International Epilepsy Day, which focuses on the stigma people living with epilepsy face around the world, we are celebrating one of our own artists, Guy Stoker.
Guy Stoker is originally from Bedlington, Northumberland, England, and currently resides in Paris. He is an accomplished composer, researcher, and public speaker on the impact of music in epilepsy.
Guy investigated the use of music to express the experience of epilepsy from 2008-10, having come across the rare form of complex reflex epilepsy known as Musicogenic Epilepsy, characterized by specific music triggering seizure activity.
“Music and epilepsy have always been a part of my life,” he writes, “but it was only in 2009 that I became aware of the neurological link that exists between them (musicogenic seizures). A year later, I met Dr. Steven C. Schachter (Harvard) at a symposium of the International Congress on Epilepsy Brain & Mind in Prague, where I learned more about how the arts can provide a vehicle for the nonverbal expression of the epilepsy experience. I highlighted that the missing expressive medium was music, and it was out of these discussions that the music of Ictal Variations was born.”
“The album is composed of 20 tracks, covering several genres: Contemporary, Classical, Pop, Jazz, Music Hall, and Sound Art. The diversity reflects the heterogeneity of epilepsy syndromes and the diverse global population impacted. Hence, the album is equally varied in its musicality, genres, and the angles covered. Some of these tracks are autobiographical and anecdotal. Some are based on medical and scientific understanding; others cover the condition’s professional and social implications. Other tracks engage with the varied manifestations of seizure activity in epilepsy, as it is observed and experienced. Several tracks were developed from improvisation, and others by using graphic scores, including Rubik’s and EEG. Because several of the tracks represent the experience of a seizure, including tonic clonic seizures and auditory hallucinatory phenomena, they can be uncomfortable to listen. Had these not been included, I feel the album would not have given a full and accurate representation of the world of epilepsy. I hope everyone who listens to Ictal Variations, or parts of it, will gain knowledge and understanding of this hidden condition.”
Since its composition and recording, Ictal Variations has been used as both an expressive and educational tool for practitioners inside and outside the medical profession. The album cover featuring a glass head indicates that through Ictal Variations, we can see into and share something of what it is to live with epilepsy.
Ictal Variations and its tracks are available for purchase and download from various sites, including iTunes, Spotify, and Amazon Music.
“You can’t tell I live with a disability if you look at me. People speak differently to me when they become aware I have epilepsy. It changes their perception of me. Their body language and verbal interactions with me become altered.
Ableism affects people differently. Today, Guy cannot work in his given profession as an entertainer on cruise lines because of his epilepsy. He hasn’t had a seizure in nine years, yet he is denied work because of his epilepsy. “People don’t understand that they are just as likely to drop dead for one reason or another as I am to have a seizure. So why am I not a good candidate? Am I less of a performer or entertainer because I have epilepsy? Are the passengers in danger with me at work, more than the person who receives the job? Not likely. Never judge a book by its cover!”
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