FND Stories is a multi-disciplinary art project focussing on telling the stories of those diagnosed with the neurological condition Functional Neurological Disorder, or FND. The project was funded by Creative Informatics and independent from but supported by FND Hope UK. It is based on 6 in-person interviews from around the UK with people living with Functional Neurological Disorder (FND) along with contributions from over 90 diagnosed people from around the world.

FND is a common and disabling cause of neurological symptoms. The symptoms are not caused by a structural disease of the nervous system but it is a problem with the “functioning” of the nervous system. Symptoms are highly varied and can cause impairment in quality of life.

Working with online surveys and the videos and transcripts of the interviews, I used methods of text mining and data analysis (Python and Excel) to interpret the stories and data.

The artwork is multidisciplinary including video, word and physical paper-based art, to tell different facets of the stories. Large paper-based pieces, use ink and gold leaf, encoding words and information. The encoded presentation slows understanding of subject matter be it data or words, enabling a more nuanced perception by the viewer. The interview films are shown silently in pairs, one showing the subject’s reaction while listening to their favourite childhood story and the other them explaining about their life with FND. Playing them silently removes our primary communication, shifting focus from what is said to a reliance on body language – the contrast allows the viewer to emotionally engage with the teller.

The aim of the project was to make work that can portray some of the lived experiences and stories of those diagnosed with FND. I don’t want to portray a list of symptoms but reveal different facets of people’s stories.

Viewer comment on Twitter:
“Don’t really know how to put into words how it felt to stumble into this while crossing campus today. Like 15 years of shame and grief melted off my shoulders. Thank you @bajbart @FNDHopeUK and all who participated”

Tweet from @JustinBiggi, 12:17am June 10th, 2022.

For the complete description the project, please visit the project website.

Ever more driven towards future progress, we sometimes forget that our current understanding of the brain and nervous system builds on countless contributions of people in the past: not just of physicians and scientists who conducted groundbreaking experiments, but also of the many brave individuals who underwent neuroscientific experiments in the face of imminent danger and paralyzing uncertainty. In this collage series, I draw upon historic archival material and my knowledge of the history of he brain to represent the lived experiences of the forgotten individuals who, by participating in experimental neuroscientific procedures in the past, made an invaluable contribution to neuroscience today.