Adel Bounif – a French poet raising epilepsy awareness

Elizabeth Cunningham

6 years ago

My name is Adel Bounif. I am 38 years old and live in the North East of France. I have a Master’s degree in Foreign Languages. I work in Luxembourg and am married.

I have a daughter called Manel. She is 6 years old. She is suffering from Dravet syndrome. It is a rare genetic epileptic encephalopathy which begins in the first year of life in an otherwise healthy infant. The disease begins in infancy but is lifelong. Infants have normal development at the time the seizures begin. Yet as seizures continue, most children develop some level of developmental disability and other conditions associated with the syndrome.

In order to make people aware about this rare disease, I have decided to write books. The 1st one is called “Celle qui m’a pris mon enfant, l’épilepsie” (The one who took my child, Epilepsy) and the 2nd one is called “Le Beau Malheur” (The beautiful misery). The goal of my books are to make pharmaceutical labs aware in order to develop research and laboratory tests.

Why did I choose poetry? For me, it is a different way to speak about sickness with light, positive and ‘shining’ words, rather than medical words that can be hard for people to read. In my books, there is a message of hope, of love and courage. Poetry can bring connections between people. I also wanted to speak about disabled persons who suffer from being set apart by society. They don’t have work, they don’t have social life.They feel alone and sad. I wanted to speak in their name and to make people aware about the exclusion and the difference between disabled people and healthy people. Thanks to poetry, I wanted to give a strong message with soft and poetic words.

To my mind, poetry can bring people together in order to make them help each other and to stand up for human values. This is the goal of my books: not to only think about yourself but think about other people who are sick and sad. People should always keep in mind that Health is much more important than Wealth. Healthy people are the richer persons in the world. Instead of complaining all the time, they should realise that they have happiness in their hands. Furthermore, I would like to create an international community of solidarity and help between parents concerned with severe disease. This would inspire people to help eachother and to stand up for human values. It is in French but the English version will follow soon. My books can be found on Amazon. A lot of parents with Dravet Syndrome from all over the world have already ordered them although they are in French.

Here is my poem called “Mirror “:

We are same living with different bodies.

All concerned but at different degrees.

So many symptoms for the same disease.

Too difficult to find the good diagnosis.

You will try several treatment.

Some will fail, some will be efficient.

Some doctors will treat you like a client.

But they forgot that you are a patient.

When you look yourself in the mirror,

You think that your life is an error.

So you stay at home and close the door,

Alone and sad of living in terror.

People don’t realise how health is important.

They have fun without enjoying the moment.

They take advantage without acknowledgement.

They just think of money and investment.

We are not asking you pity.

We just need a little empathy.

Please dont’ exclude us from society.

Please give us respect and dignity.

We fight against people’s fears.

We try to break taboos and wrong ideas.

We are creating solidarity between families.

All united like the leaves of the trees.

It has nothing to do with psychology.

This is a neurological disorder only,

Like a storm seizing the brain quickly.

This could be the definition of Epilepsy.