Life is beautiful with my epilepsy- every night and every new day after: severe and bright and happy and hilarious!
People see my bright side but never the dark side- the impact of not sleeping, the work of washing bedclothes, of not having a fresh brain in the morning.
The silence of epilepsy and the things you cannot do because of epilepsy. An unseen wheelchair.
Despite a lifetime of severe epilepsy – the many times I almost died; the illnesses that come with it in older age- I am so thankful to see the bright side of life everyday. To have my intellect, my colourful and bright life; to have humour and be a happy person, who always sees the sun coming up.
I have a problem with severe memory loss, both long and short term.
This has been part of my epilepsy since youth.
I saw the movie Still Alice and recognized these symptoms as being similar to hers, but I keep my ability to understand.
For me is every day a new day with no history- constantly learning, repeating and forgetting.
I make photos and notes of each day for a yearbook, so I can see what happened although I won’t know most of it.
Pictures are the history of my life. But I love the cloud of not knowing.
It frees from all, always an open view and no prejudice…
It’s the other side of the picture. Black and white.
Because of my life, work and activities here, I feel it is necessary for me to remain anonymous. I will surely lose work or not even being asked to work if my epilepsy is known. Discrimination is worse for epilepsy than with many illnesses, meaning we do not only have epilepsy but more to think off.
I had to move, change jobs, create my own company to work and also had to find new doctors etc. Severe epilepsy is still not allowed to have a face if you want to function, live safely and hold a good position.
I have a wonderful life and my focus is to share that in a way that’s good for me and others…but always in my mind: society, economy and environment is not beautiful.