Children with absence epilepsy are “gone” for a few seconds, sometimes hundreds of times a day .. If You Are Not There, Where Are You? shapes the worlds where the children and young people are then.
If You Are Not There, Where Are You? looks for language for the multi-sensory experience of absence, 'not being there'. And when you are away for a while, where are you?
Absences can be extremely anxious, disorienting, exhausting, neutral, but also pleasant. Children sometimes call them on purpose. Before, during or after an attack, reality can suddenly be perceived completely differently. The absences are thus an involuntary montage of reality. There are holes.
This project makes the experience of an absence divisible. This makes the children and young people with absences less lonely and anxious in their experience. We call the method by which we make the experience shareable 'mapping the experience'.
By mapping the absence experiences , we contribute to knowledge about epilepsy. Not by interpreting it, but by imagining it.
