Epilepsy: the invisible pain
They say life is a long stretch of a calm river, but not for everyone! She was for me until the day when everything rocked, the day my destiny was changed dramatically. People do not realize how life can be so sweet and so beautiful. They complain all day long for trivialities. They are not even aware that they have before their eyes the most beautiful wealth: the luck and happiness of living in good health. I was rich before. Now I am poor because my child has an incurable disease, that has currently no hope of being healed. As a parent, how can we accept that?, How to continue living carrying the bundle of pain in my head?, How to overcome this feeling of helplessness?
When I started speaking to my heart, I didn’t know myself that this was the beginning of a new life: a rebirth as a poet. When I learnt that my 7-year-old daughter was suffering from the Dravet Syndrome, a rare genetic epileptic encephalopathy, this was like an earthquake in my life. Then, I needed to write in order to express my sorrow and my pain. Words and rhymes came naturally to my mind. This was obvious that poetry would be my survival weapon.
Adel Bounif is the father of Manel, a 7-year-old little girl who’s suffering from the Dravet Syndrome, a very rare and severe form of genetical epilepsy. In order to make people aware about this incurable disease, he decided to write books. He would like to encourage the government and the pharmaceutical labs to develop research so that the disease could be diagnosed at an early stage.