I have been thinking that its not easy being disabled when you want to be someone who cares for others in this life. As a person who could have a seizure at any moment I cant make promises or provide the sort of solid support that I know is enjoyable to experience. Perhaps it is easier to be selfish and insular, a person who thinks the world does to a certain extent revolve around them and therefore is not challenged by either the level of care they receive from their carer or by the lack of participation they have with others. I don't know what this would be like as I am the type who is frustrated by wanting to reach out and touch others lives, making a difference and upping their quota of smiles - unless my strong awareness of self and epilepsy makes me more selfish than most... (I guess we could debate that all day...)
Anyhow... it makes me wonder. How can I help people. I am not employable due to my many moments of 'being elsewhere'.. but I am very inspired by things and have interesting ideas. I cannot do a project that requires in any way systematic ways of being day after day as I can't be sure 'when' I will be 'well' yet... when I was younger my mother says I never had a fit when I was on stage... maybe just after the curtain closed but not before.
My seizures tend to come in lull spaces and if I dont let em come they build up into a couple of days maybe of confusion, tiredness and simple partial seizures.
BUT..... If I live to care and to inspire and empower my 'community' maybe those few days are worth it if I spent time putting off the seizures for the benefit of a project that is direct and fresh enough in that moment to breathe creative life and energy into those people I love right now and those I have have the potential to love in the future (which included practically everyone at a push ;))
So.....
I have a thought - well I have had it for a while but I am finally expressing it here. I am going to become a kind of community and street performer. And I'm going to perform within a community project I am going to call Hachisu Okiya 'the Lotus Geisha House'. I plan to give my energy in wearing bright silk kimono and following the path of a geisha as a person embodying art. I am open to others joining me and will run games evenings, learn to perform dance and have arts days for all ages. I think I can do this once a month - and dress up and go to the town when my seizures seem to be 'taking a break' for that morning or day. My carer can take me home when I am tired and I have already witnessed the smiles the bright kimonos bring to people's faces. So even though I cannot give 'solid regular support' to my friends, potential employers or even my family, I can sporadically make a difference to my town by demonstrating my 'being different' in a fun way. I hope ^^.
I have started a blog to illustrate my path in this... call this blog my Mind and the other my Body. As with the manifestation of 'Hachiko' (my Geisha name) I am reaching into the conventional truth my epileptic states aim to withdraw me from.
Feel free to visit.. as both inner and outer is an expression of 'Me' that we can share.
http://hachisuokiya.wordpress.com/
Emily x
