Sixty-five Million people worldwide suffer from epilepsy. The seizures most common with children and adolescents are called absences, which have a severe influence on these young lives.
If You Are Not There, Where Are You? (IYANTWAY) is an international transmedia project that aims to:
• Find a language for absence epilepsy.
• Change the scientific paradigm that assumes there is no consciousness during seizures.
• Engage the public in a sensory dialogue about (altered states of) consciousness, perception and how our minds work.
Children with absences lose consciousness for short moments and can hallucinate violently, for some over one hundred times a day. IYANTWAY Creative Director, documentary-maker Maartje Nevejan, had absences as a child too, and like most children with absences she lacked the words to describe the confusing, multi-sensory experience to her parents and others. Twenty years later her son also began to have absence seizures. She recognized his confusion and started to ask him questions, but he could not talk about it until, on a museum visit, he pointed to a work of art that resembled the feeling of an absence experience. This discovery strengthened Maartje’s intention to investigate what happens in the theatre of our mind during an absence, and IYANTWAY was conceived.
During a residency at the St. Anthony Hospital in Utrecht, an institution specialising in epilepsy, Maartje initiated a collaboration with Professor Herman Schipper and the Royal Academy of Science, and interviewed many children and young people with absences between 5 to 25 years old. She matched ten of these children with an artist from various disciplines and together, in co-creation, they gave shape to the absence experience of the child. These ten works of art where presented by the children to their parents, brothers, sisters and neurologists. The result was astonishing: not only was it the first time that the children experienced their disorder as something they could be proud of, it was also the first time they could share their inner experiences with loved ones. It empowered them. It also triggered the curiosity of the neurologists because the project challenges the current medical paradigm that there is no consciousness during seizures. Art is uncovering new knowledge and framing new scientific questions.
The outcomes were presented in 2017 in both an online (www.areyouthere.nl) and live exhibition where visitors were invited to step into a virtual reality absence experience. People were deeply touched by the children’s expression; we realised there is something universal that people recognise in the expression of an absence experience, it poses the ultimate question: what is reality?