Out of the Blue was commissioned by the Institute of Neuroscience at Newcastle University and funded by the Wellcome Trust. Scientists at the institute are developing experimental treatments for epilepsy that use brain implants and light-sensitive gene therapies. To a lay person, this research – involving neuroscientists, computer scientists, engineers and clinicians – is bewilderingly complex. My role was not to illustrate or explain what they were doing, but to bring a different perspective to the project.
What is epilepsy? There are several answers to the question. For the scientists, pharmacists and doctors seeking an effective treatment, it’s a neurological conundrum that might have a solution. For most of us, by contrast, it’s just a word. Although it affects one in a hundred people, it gets few headlines and we know little or nothing about it. In many ways it’s a hidden condition.
But for those who have epilepsy, it is something else. It is a lived and living experience. For them, the question is more personal: what is it like to live with epilepsy? Only they can answer it.
This was my starting point. Before responding in some way to the science of these radical treatments I wanted my work to bear witness to the experience of those who live with epilepsy.
The Epilepsy Society agreed to circulate a questionnaire for the project. It asked a number of questions. What does epilepsy mean to you? How do you feel at the onset of a seizure, and how do you feel afterwards? Are there any positive words to describe your epilepsy? Is there anything else you would like to say?
Almost a hundred people responded. They described with candour and in detail the reality of how they – and their families – are affected by the condition. Their words were extraordinarily powerful, moving and illuminating. They form the foundation of Out of the Blue.
How best to embody this record of a condition so intimately stitched into the lives of those who have it, and yet so hidden from the public eye? I imagined an installation in which the words were embroidered into antique undergarments – chemises, nightdresses, bloomers. Like epilepsy, these garments were worn concealed beneath the surface; in their vintage, too, their very fabric would contain hidden histories.
The Royal School of Needlework offered to set Out of the Blue as a first-year BA embroidery project: thirty-five of its staff and students took part. Other embroiderers heard about it from a range of sources. A total of 106 signed up to sew.
Each volunteer was sent an individual garment as their canvas, together with a selection of embroidery threads in ultraviolet yellow and light blue, and black. They were given an edited testimony for the front and a single word for the back. The instructions were simple: keep to the colour scheme; sew the single word on the back; the testimony on the front was to be legible.
Embroidery is a slow, contemplative process: many of the embroiderers spoke of the impact the testimonies had on them and their design. Their skill, craft and imagination transformed each of the original garments into a uniquely responsive embodiment of the words they carry.
The resulting installation consists of 106 antique garments embroidered with the words of people living with epilepsy, suspended from the ceiling of Newcastle’s Hatton Gallery in a single block of one hundred, lit by natural and ultraviolet light. The garments move on pulleys programmed by computers to correspond to the algorithms of electrical activity in an epileptic brain.
The photographs of the embroidered garments were taken in the Royal School of Needlework’s apartment at Hampton Court Palace. In this rich historical setting they are presented as portraits whose very formality heightens the intimate drama of the words they carry.
Each copy of the book also includes a unique, signed cyanotype printed on fine Japanese paper. Cyanotypes are made using ultraviolet light, a process which mirrors the use of light in the optogenetic therapies being developed by the scientists. These prints explore, through pattern, the synchronization that occurs in the brain during an epileptic fit.
This book, which contains the text of the testimonies and the embroiderers’ responses, forms part of the installation Out of the Blue.