How would you describe the journey your epilepsy has taken you on? A group of people in Northern Ireland have been considering this question using an unusual medium.
As part of a project with Epilepsy Action Northern Ireland and Community Arts Partnership, a group of people with epilepsy met weekly during March. They learnt how to work with glass and created their own piece of fused glass art. On Purple Day, their creations were displayed in a pop up exhibition.
Each piece of art represents a person’s own experience of epilepsy, and the journey the condition has taken them on. They are all so different, and the exhibition was an opportunity to raise awareness, start conversations and challenge misconceptions around epilepsy.
One of the participants in the project was Debbie. Debbie has had epilepsy for the past five years. Her epilepsy is uncontrolled and she has lots of different seizure types. Despite having full independence before developing the condition, Debbie’s epilepsy meant she felt so anxious that she was afraid to leave the house without her mum who is also now her full time carer. Attending the glass workshops was the first time Debbie had left the house alone in years.
She said: “Having epilepsy has knocked me down so much, it’s soul destroying. This for me came out of nowhere and turned my life upside down. Epilepsy was something I knew very little about. My epilepsy is uncontrolled, but I hope in the future this will not be the case and my seizures will stop.
“I am not an artistic person, however I decided to do this art project. I wanted to meet other people with epilepsy, who face the same challenges that I do. I feel it is important to raise awareness of epilepsy, the different types of seizures and how it can change a person’s life.
“However raising awareness is never enough. I want to change people’s perception of this disability. I want to help them see how harrowing it can be, but also how amazing life can be again if it can be controlled.
“My piece of art started quite negatively as that’s how I see epilepsy. But on further thinking I changed it to have both negative and positive aspects. To begin, it shows my husband, son, dog and I in our bedroom – my family love me regardless of epilepsy.
“The yellow brick road shows that treatment is long and winding and sometimes doesn’t have the outcome you want. I included a window to show how isolating epilepsy can be, which is my own personal experience. I am now afraid to go out alone, so I am often the person inside looking out.
“It’s funny how isolated you can feel when you are never alone. I always need someone with me now in case I have a seizure.
“The whole process has really boosted my confidence, and I think that I’ve made some lasting friendships. It’s really helped me remember who I am as a person, the skills I have and how much I love to be an advocate for other people”.