Isabel, 25, UK
After having epilepsy for eight years I have only just learned to accept it. I have since discovered a whole new community, who are strong, friendly and inspirational. I have enjoyed reading all the stories on here and want to share my own- starting with a quote I love:
“I'm not an epileptic. I'm important. I matter. I can do anything. I'm a sexy, strong woman that happens to have epilepsy. Do you get it? I have epilepsy but it's not who I am.” ― Ray Robinson, Electricity
Phase 1: You’re telling me I have epilepsy?
The doctor radiates calm, satisfaction as he tells me I will probably have epilepsy for the rest of my life because it is the result of scarring on brain. Already my cheeks are itching again from that hot salty liquid. Crying is my natural state at the moment. He is impatient. “You’re lucky to be alive” he tells me “not many people who have had brain haemorrhages are as lucky as you”. It seems an odd word to use to describe my situation. “I’d rather be dead” I reply. Or do I? Is it only in my head I said that? Or do I scream it at my mum afterwards? I’ve tried to push through the blurred shapes and mixed up sentences that form my memories of being seventeen but cannot locate them - I do not remember who I said them to, or when. My brain was so exhausted from the explosion, the seizures and the constant crying that it did not have the energy to store memories for later, it was surviving on its basic functions.
I’m twenty-five now and more able to put my situation in perspective- to realise that it was it was fortunate I survived the haemorrhage (perhaps better wording than I was fortunate?). There were all sorts of reactions going on in my brain, however, that were beyond my control. Almost every person I have spoken to with epilepsy has encountered deep bouts of depression. Something about that excess electricity interferes with other thoughts. I really wish someone had told me that these thoughts that my life was not worth living might have been part of the epilepsy itself. This is a fact that needs to be more widely known! Then we can stop being ashamed of the thoughts as we learn to stop being ashamed of the seizures!
Phase 2: A new dawn
Then they found a medication, which was not perfect but better than the one before. I still had partial seizures when I was stressed or tired but no tonic clonic seizures. I went to university in one of the most beautiful cities in the world, Edinburgh, Scotland- “sometimes when I’m walking I just have to stop and appreciate how lucky I am to live here” my new best friend said. That word again - lucky. When I think of all the opportunities I had there, I guess I was. I lived abroad for a year, hitch hiked across Europe, travelled to Ghana and Togo, went to plays in churches, parties in quarries, read some of the finest literature and philosophy ever written, bared my soul to some of the finest people I had ever met, laughed with some of the funniest.
Epilepsy cannot just be willed away because it does not suit the lifestyle, however. I was never truly happy because I was always pretending to be someone else. I hid my condition from as many people as possible and dreaded having a seizure around university friends. Surveying other students I saw only their front - believing them to be whole and healthy - and myself to be inferior. I refused to accept my limitations as it would mean accepting epilepsy was a part of me. There were periods where I would fluctuate between working manically and going out manically until my body would force me to stop and I would be bedridden with the seizures. As such, I was letting the epilepsy win, it was not just part of me, it had control of me.
Phase 3: Moving Backwards to move Forwards
I then decided to become a lawyer and did a post graduate law qualification. I am interested in human/civil rights issues. I worked hard to give myself the best chance possible in an incredibly competitive field: winning national advocacy competitions, prestigious scholarships, work experience placements, excelling at exams, dedicating the rest of my time to voluntary work and my part time job. What do you think happened? I crashed. I had to drop out of my professional training year, had to pay back my full scholarship, give back my free i pad, pull out of the competitions.
After moving back in with my mum, I am sleeping in the same bed I slept in when I was first diagnosed with epilepsy. In some ways I have come full circle but the similarity of my surroundings also shows me how much I have changed over the last eight years too. I started a blog with the aim of building a community in my home town Nottingham, sharing ideas on treatment and services but quickly realised how easy it is to build friends all over the world. Through becoming public about my epilepsy I realised it was time to learn a lesson I was not ready to learn in that doctors office at seventeen. I need to accept the epilepsy before moving on with my life - find ways of coping with it, learn to be open that I have it, know when I need to stop. Going back to the quote right at the start of this story - it is only through recognising that I have epilepsy but knowing that it does not define me that I can move forwards and do whatever I want.
- February 1st, 2015
Contact info: Twitter: @epilepsynotts Blog: www.epilepsynottingham.wordpress.com
