May

May:

“My fits start with music. When someone speaks at a certain frequency, I get into that flow and a melody starts in my brain. I get completely pulled in and everyone around me then seems to be speaking in a specific way. I have no idea what they’re saying. I can’t catch it, it falls through.”

May is 28 years old. She has an ‘Alice in Wonderland’ like quality about her. The day before her 13^th birthday, May had her first fit. It started with absences, but by now she has several types of fits. When she’s ‘gone’ she hears a melody. Her parents have told her that she sometimes hums that tune when she’s ‘gone’. The tune evokes a vague memory and she’s been trying to find it for years, but hasn’t been successful yet. Some music evokes a fit. In her phone, she keeps a list of ‘wrong music’ that she shouldn’t listen to, or things go wrong.

With composter Falk Hübner, May has been searching for the tune in her head. The tone, the instrument etc. Fiddler on the Roof, her favourite musical, plays a part in this tune. At first the music is pleasant, then it turns mean and drags her into her fit. Through music, May was able to talk about the various stages in her fit and she turned those into a composition.

Falk and May have looked for keys, instruments and melodies that reproduce May’s ‘epileptic voice’. They have turned those in a new composition and performed it. During an intimate presentation on 6 July 2017, May’s parents and brother could hear what she has been hearing inwardly for 15 years.

In the Rabbit Hole installation, one listener can follow the emotional effort that an absence evokes, through sound.  

Click the button below to see May’s VR space!