Epilepsy, mon amour is a 50-minute film.
It is the diary of my epilepsy. I write "my", because there are several different forms of epilepsy. Some of them are harder to live with than mine, others are easier to cope with.
Between the ages of 11 and 28, my life was marked by violent seizures that would terrify my family and friends and puzzle doctors.
My voice will take the viewer through the different stages of my experience. He will turn into this 11-year old girl that had to face frightening machines, and endure people's pitiful and scared looks.
I will take him to the other side, to what I call 'behind the eyes', to see things machines will never be able to grasp. He will grow up with me as I gradually understand my mysterious condition. And finally name it: Epilepsy.
He will experience my seizures though images and sounds, all created by different artists (dancer, musician, photographer). We will travel back in time through the archives of Paris's Pitié Salpêtrière Hospital, which recount the violent methods used for centuries. These methods still linger in today's perception of the disease.
My 91-year old blind grandmother will be interspersing the film with reflections on life, darkness, fear... She will stand as Pythia, the oracle of Delphi, a strange prophetess answering my thoughts. There is a fine line between reality and perception that easily becomes blurry, and that makes it all the more interesting.
The genesis of the project
Epilepsy is little known, although it is one of the most common neurological diseases. For people suffering from epilepsy, life can become hell. A hell where what people think stands alongside the fear of new seizures and the helplessness of most doctors.
I feel lucky that I have found a way to live my life with epilepsy. That is why I want to share my experience, which I hope will help others struggling with this condition. Or at least contribute to a better understanding of it, of what it means to suffer from an epileptic seizure.
Artists contributing to the film
An epileptic seizure can resemble a dance, Lebanese choregrapher Alexandre Paulikevitch turns the inner life into a performance.
Photography is at the heart of the film. Lebanese photographer Caroline Tabet's vision of the world, bother inner and outer, meets with mine.