Beyond expectations

There seem to be fewer and fewer occasions where subjectivity and neural disorder are married together without causing controversy; thankfully, Beyond My Control is raising the numbers. The public engagement initiative IMPACT – a collaboration between the University of Exeter and Exeter Northcott - communicates in equal measures the science, maths, and complex humanness of experiencing recurrent seizures.

Beyond My Control incorporates improvised acting to demonstrate the intricate relationship of neural networks, and what might happen when a seizure strikes. The show introduces us to a family, the Brains – a dad, mum, daughter, and her boyfriend – as they work their way through plausible social dilemmas. This helps explore what happens when communication goes awry, relating this to excessive synchronous activity in the brain. Not only is this a great analogy, but involving the audience to suggest ways forward for the family to work through an issue is actually pretty therapeutic (and entertaining!).

The main takeaway from the show was the recorded lived experiences of those with epilepsy and their relatives – the embarrassment, guilt, confusion, and sometimes pleasure, that a seizure can bring. This really helps drive home the human behind the diagnosis, and the show makes no bones about making this explicit. Diagnosis is treated as practical and sometimes helpful labelling, but by no means thought to be fully encompassing those labelled with it.

While the show emphasises how complex – socially and psychologically – experiences can be for those with recurrent seizures, no one ever disregards the neural basis of the experience. This non-mutual exclusivity is really something special, which we need to see more often. Too frequently there appears to be a split between those who want to treat neural syndromes as a biological or psychological and social phenomena, and Beyond My Control shows that is can be all three at once: saying someone has a brain disorder does not mean their psychological and social experience is meaningless.

Public engagement is rarely something that is put at the forefront of scientific research – it can be clunky and underinvested. Beyond My Control goes above what is often expected from a science and art collaboration – more like this please.

- Reviewed by Joe Barnby, PhD student studying the cognitive neuropsychology of beliefs and delusions, at King's College London