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21 January 2020

Victorian underwear reveals what it is like to live with epilepsy

Last year we posted a call out on social media, asking people with epilepsy to share their thoughts  about what it is like to live with seizures.

Now the artist, Susan Aldworth has turned those testimonies into an innovative exhibition using both antique Victorian underwear and sophisticated technology to explore the impact that epilepsy has on people’s lives.

And the exhibition, ‘Out of the Blue,’ opened  on 18 January at Hatton Gallery Institute of Neuroscience, Newcastle. It will run until 9 May 2020.

“The worst part is that no one else notices. It feels like I’m going to explode but no one else sees a thing... I’m just stuck, I’m still conscious. I can see, feel, and think. But I can’t do anything. I’m trapped in a body that won’t listen to me.”

Sophie

The exhibition is built around more than 100 pieces of Victorian underwear – chemises, nightdresses, bloomers – each embroidered by members of the Royal School of Needlework with extracts from individual testimonies.

The garments are stitched in ultraviolet yellow and light blue, and black.  They are then suspended by the ceiling on pulleys programmed by computers to correspond to the algorithms of electrical activity in an epileptic brain.

Out of the Blue

Out of the Blue was commissioned by the Institute of Neuroscience at Newcastle University and is funded by the Wellcome Trust. Scientists at the institute are developing experimental treatments for epilepsy that use optogenetics, a biological technique that controls the activity of neurons in the brain, using light and genetic engineering. 

The fluorescent embroidery is lit by both natural and ultraviolet light to reflect the scientists’ light-sensitive gene therapies.

“After a seizure my head feels like it has been smashed against a brick wall and my whole body aches. My epilepsy nurse once told me she had a patient who was hit by a bus and they said that was less painful than a seizure.”

Willow

Voice for people with epilepsy

“As an artist I really wanted to explore how it makes people feel to have epilepsy and what it is like to live with it,” explains Susan. “I wanted to give people with epilepsy a voice and bring the condition out into the open.”

Almost 100 people responded to Susan’s request for personal testimonies, describing the reality of how they – and their families – are affected by the condition.

“I was really blown away by their responses,” says Susan. “They described their lived experience of epilepsy with amazing candour and detail. Their testimonies are incredibly emotional and real.”

Find out more

You can read a full interview with Susan Aldworth in our members’ magazine, Epilepsy Review. Find out how you can become a member and get a copy of  Epilepsy Review twice a year for free

Out of the Blue is at Hatton Gallery Institute of Neuroscience, Newcastle and runs from 18 January – 9 May 2020.