Epilepsy: the invisible pain

Adel Bounif

Description

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.

Informations

• Publié par: Les Éditions du Net
• Date de parution: 17 janvier 2019
• Nombre de lectures: 0
• EAN13: 9782312064505
• Langue: English

Extrait

Epilepsy: the invisible pain
Adel Bounif
Epilepsy : the invisible pain
LES ÉDITIONS DU NET
126, rue du Landy 93400 St Ouen
© Les Éditions du Net, 2019
ISBN : 978-2-312-06450-5
Foreword
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.
The Dravet Syndrome begins in the first year of life in an otherwise healthy infant but is lifelong. There is no cure. 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. It is commonly misdiagnosed. MRI (magnetic resonance imaging) and EEG (electroencephalogram) tests are also normal in most cases. This mutation is most often not inherited from the parents, but is considered as « de novo » which means that the mutation happens randomly. In most cases, the seizures are refractory or do not respond well to seizure medications.
In order to raise awareness about this rare syndrome, I have published in March 2017 my first book called « Celle qui m’a pris mon enfant, l’épilepsie » (« The one who took my child, epilepsy »). This was the beginning of a poetic adventure. This was also the start of a long struggle which aims to raise awareness among the media, the government and the pharmaceutical labs in order to develop research so that the disease could be diagnosed at an early stage. What is amazing is that I didn’t know what would happen after the publication of this book. I received so many positive comments on the social networks which is very rare for poetry. In August 2018, I was awarded by the international Naji Naaman literary prize with « The Award of Merit » which gave me the strength to continue to fight against taboos and clichés on epilepsy. When I realised that a lot of people were awaiting to read a follow-up, I was so surprised and thankful. After long hesitation, I have decided to publish in March 2018 a second book called « Le Beau Malheur » (« The Beautiful Misfortune »).
But why did I choose poetry? People might think that poetry is trivial. But for me, this is a survival weapon. A way to exult hiden feelings deep inside of me. This is also a different way to speak about sickness with light, positive and soothing 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 aimed at disabled persons who suffer from being set apart by society. Most of them don’t have work or a social life. They feel alone and sad. I wanted to speak in their name and 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. I strongly believe that beyond the political and geographical borders, we are global citizens and universal human beings. Thanks to my books, I hope that I would be able to create an international community of solidarity between parents with disabled children. My mother tongue is French but writing in English could carry my poems across the world. Finally , the purpose of my books is to make people not only to think about themselves but think of others who are sick and sad. People should always keep in mind that health is much more important than wealth. Healthy people are the richest persons in the world but they don’t know it. Instead of complaining all the time, they should realise that they have happiness in their hands.
M ISTER D RAVET S YNDROME
Before you, it was like a paradise.
Every morning, we watched the sunrise.
When you came into our life by surprise,
Every day has become a difficult compromise.
Doctors said it happened « de novo »,
Which means it’s a very weak ratio.
This announcement was such a tornado!
It was the worst movie’s scenario!
We learned that you’re a genetical mutation,