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Youth for a healthy epilepsy
A youth meeting organised by the Chilean League for epilepsy
"Life is full of opportunities, as soon as one door closes another one opens" … sounds good but is it true for a young person with epilepsy?
To young people with epilepsy life is not full of possibilities. There are many reasons for not participating in life, the seizures, the possibility of seizures, prejudice, doubts. This is a lot of weight for someone to carry as they go out into life. Many of these fears are produced by pure ignorance, that in the end causes more harm than the epilepsy itself. Adolescents find the adjustment to adulthood and a purpose in life difficult enough even without this extra burden.
The problem becomes more serious when the young people themselves are confused about what is possible for them to do and what isn’t. The tendency is to turn inwards and develop a fear of life and what it offers, to refuse to ‘open the doors of opportunity’ and meet people for fear of being rejected. The ever-present fear of a seizure waits in the back of your mind and creates a list of the things that you cannot do. At every corner in life a person has to be prepared to meet the fear and decide what is or what is not possible.
Of course some people just reject their fears and declare that they can fly even thought they have no wings, and they are proved wrong. But there are also those who dared to say it was possible and found a way.
It is often said that a problem shared is a problem halved. So, what happens if we share a problem with more people? Although it is often hard, the more we talk about our problems, the more we discover that, although we couldn’t see it before, there are lots of people facing that fear, we are not alone. The problem is that if someone is too frightened to go out and to learn about or talk about their epilepsy then they never get a chance to open the door of opportunity or to face the fear as a member of a group.
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Youth for a healthy epilepsy
In Santiago de Chile in January 2002, a unique opportunity arose for 80 adolescents with epilepsy. They came from all over Chile to attend a weekend meeting called Youth for a healthy epilepsy, "Jovenes por una Epilepsia Sana". The idea was that the participants, through discussions and working together, would learn to understand that they do not have to fear epilepsy and they can participate in life and not only that but that they could have a good life.
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From Thursday 10th to Saturday the 12th of January, young Chileans were encouraged to reflect on their experiences and discuss their opinions on such sensitive topics as epilepsy and sexuality; overprotection and rebelliousness; dealing with potential risks of injury; and making career choices.
Most of the activities took place in the grounds of the Chilean League’s specially built training facility in Santiago. The young people had prepared in advance theatre and musical presentations as part of the proceedings. One day was spent in a beautiful park in the foothills of the Andes where there were plenty of opportunities for expression through sport, art, theatre, music, and discussion.
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The idea behind this first youth meeting in Chile was that it should act as a mirror to reflect the experiences of the young people so that they themselves could see who they really are and how others see them. In this way they could learn to deal with prejudice from outside and their own fears from the inside.
The Chilean League stresses the importance of public education. There are many people in the world who would swear that epilepsy is a contagious disease, a mental deficiency or a possession by some evil spirit. In Chile there is a need for a massive education campaign to demystify epilepsy. There are 200 thousand Chileans with epilepsy. "I often hear of the problems experienced by children with epilepsy in school. One can conclude that the stigma starts there and it sticks to the person for the rest of their lives" said Dr Acevedo, former president of the Chilean League for epilepsy. Dr Acevedo says that "the majority of the diagnoses are made during the school years and in childhood there will be a period where the seizures are uncontrolled prior to finding the right medicines. For that reason the children experience the heaviest burden. At the Chilean League it was felt that a professional commitment was needed to deal with the social aspects of epilepsy in childhood. Therefore, the weekend’s activities with these young people has been of the greatest importance".
The Youth for a healthy epilepsy meeting "Jovenes por una Epilepsia Sana" was just the start. Similar meeting are planned for the future in Chile and Argentina. The meeting also had an international element because this is the first part of an international project which aims to bring together young people with epilepsy from all over the world. There is strength in numbers and the numbers are growing.
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Youth Exchange programme with South America
It all started a few years ago when, in discussions with the Youth Programme of the EU and with members of the IBE executive, it was decided that we ought to try to extend the EYiE project outside of Europe. Up to now it has been exclusively a European project with the aim of developing a European internet self-help group for young people with epilepsy. There have been two very successful training courses, one in Greece and one in Germany, and the participants continue to maintain a series of web pages about epilepsy in 16 languages and have weekly chat room sessions. All this you might think is pretty good going and quite impressive but the IBE said they wanted more!
So, what more can be done? Well there is a whole world out there and, as the EYiE project is internet based, distance is no obstacle. It is only our imagination that holds us back. Therefore, the EYiE project is seeking to involve other continents through a youth exchange programme. A youth exchange is where young people from one country or region visit young people from another country or region and work together on topics that lead to greater understanding of themselves and their cultural backgrounds. The European Union Youth Programme views youth exchange as a very important activity in order to bring people together across national borders. In their wisdom, they are also interested in extending the benefits of the Youth Programme to regions outside Europe and, of the many places they could be interested in, the top of the list is South America.
Getting a Youth Exchange to work is quite a complicated task and doing an exchange between two continents is some what larger and more complex. Therefore, a preparatory visit to make the arrangements is vital to the success of the project. It was in order to do this that EYiE team, consisting of seven people from Sweden, Germany, Ireland, the UK and Argentina travelled to Chile in January 2002.
We were privileged to be able to visit Chile during the 'Youth for a health epilepsy' meeting and we were therefore able to meet and get to know some of the young people who would be on the youth exchange.
The Youth Exchange will take place during 2002 and provide the opportunity for 20 young people from South America to travel to Europe and meet 20 young Europeans. The two week activity will take place at the Hotel Lindenhof in Bielefeld, Germany. As with the other EYiE projects, there will be some training in the use of the internet but we will also be offering other opportunities for expression and discussion. Of course, it will not be all work and an impressive list of sporting activities will also be available as well as a two-day visit to Berlin.
We hope that this door of international opportunity will be kicked wide open and the young people involved will be able to see that it is possible to do some spectacular things despite having epilepsy.
John Chaplin and Claudia Fuentes
(Photos by Mark Harding and Oka Baum)