Thursday, 5 September 2013

End of holiday...

End of holiday..... and so so very tired!
I am becoming stupider by the day and well overdue for a deep seizure - or thats what it feels like.
My seizures certainly seem to be a release from all the expectations and habits that I end up having to hold on very tight to to maintain my idea of who I am. It's dam scary to be lifted out of a constructed world at not much more than a moment's notice. And I mustn't really have a seizure before i have gathered the school uniform and bought some new shoes for the kids.

When i have a deep seizure it takes me 2 or 3 days to come back to understanding my place in the world. Steve, my husband and carer, is excellent and probably could get all the things that need doing done in my 'absence' but there is always that nagging motherly instinct that wants to be the best mother ever for my dear little darlings - and 'zoning out' is not one of those things that that 'best mother' would do.

The mother instinct is such a weird thing.. I remember when i was pregnant with my first child and so very worried that i would be too selfish or disorganised to care for it when it arrived. Then when she did, suddenly the parenting thing made sense on an emotional level (intellectually I'm not sure i came back to roost for at least 10 more months). But for a disabled mother I think that the awareness of how one is restricted by your disability constantly fights with the instinct to be the best mother ever for this miracle person who didn't exist and now does.

How does one 'care for' whilst being 'cared for'.. I wonder, wonder......
^^

Saturday, 8 December 2012

Being Human

A lot of what we do is issue-based - I get that... but with a brain that, from my perspective, starts and stops all the time I have been making a study of what it means to be me. I forget all sorts of things when i have a seizure... things like my coping mechanisms, what i enjoy doing, the book i was reading and new friends i have made. So it ends up with me kinda being me specifically, as a practice between recovering from one seizure and the next.

Whatever people might say about finding a 'fix' for this.. when i took the meds prescribed by the doctor (they since have said i can choose either way whether to experiment with this as i have 'difficult to treat epilepsy') they levelled my experience so my life was more consistent.. but I strongly believe that this was a subsistence level due to the high dose i had to take and I prefer exploring the dynamics of who i am without correction.

No-one wants to be not special.. we all struggle to be different. We more specifically push real hard not to be like people we don't like - and I'm wondering how much that makes us avoid behaviour that actually we would personally enjoy. I don't want to be generic.. despite the fact my seizures stop me from developing the kind of personality which would be more natural if my mind was more of a stream of moments. I still want to believe that the parts i remember and practice between seizures are part of a strong 'me', individualistic and yet not solely issue based (ie made up of the things i grasp strongly at because they make me angry or scared). But I wonder... what bits am i leaving out..? What parts of 'being human' on a generic level are generic BECAUSE most people can enjoy them.

I tend to avoid things and behaviour that seems unintelligent to me.. I confess a subtle snootyness about that. But maybe they seem unintelligent because i can't see the type of intelligence that lies within the behaviour or.. lets face it,, i am ignorant of why people find it fun and interesting because I simply haven't tried it.

This has been interesting up to this point but I feel I need to illustrate a bit more what I am meaning so I'll try but its reaching into the area of stuff i find hard to talk about for whatever reason - so bear with me ^^ 
1) I had a childminder once who spent most of her day in her dressing gown, served us greasy food and often there was violence on the TV that was on all day while she 'cared' for kids. I think from that i have taking a guilt about lazing about in my dressing gown (which is a human freedom is it not).. and a fear that if one doesn't maintain constant and nitpicking vigilance while kids are around.
2) My mother is a wonderful person who I admire and feel grateful for her love in this life but her extremes from my perspective oscillate between someone who defines herself by work (when she was younger and not so ill mostly) and a fairly mousy person who doesn't have much sensuality in her life. From this I have been quite timid about intimacy with others and the rituals that surround them.. cards and random pressies for a loved one.. dressing up attractively.. wearing pretty underwear.. that sort of thing.
This also includes frivolous behaviour - getting drunk, random parties, having a dog, art for art's sake etc...

So I think i am embarking on a gentle study of conventional human objects and activities.. the things that 'a lot of people do'. This first few steps seem to reveal an interestingly easy happiness.. pleasure in simple things or whatever..

For the record...     ;)

Friday, 14 September 2012

Letter

Hi everyone...

Long time... spring and summer was really hectic. I wrote this letter to someone recently and wanted to share it.. I am constantly watching my epileptic patterns and trying to figure out how to assert what i really require from those who wish to consider themselves my friends. I am still learning how to be friendly to myself after all...

It frustrates me when I cannot fulfill the small amount of promises I have made. I like to be honourable and consistant with others (like thats every gonna happen with my inconsistant brain i mutter to myself). So I figure knowing my limits well will help me to know what promises I can make... so tho it looks maybe like selfishness I am trying to see it as a practice of honesty instead. Complicated ne?


Hi ***************,

I feel there is something I ought to tell you about me.. if I am going to mentor you in any way 

I am a temporal lobe epileptic from a brain injury i recieved when i was 8 years old. As as result of this i have fairly frequent seizures that take varying forms. One thing i get often is 'Jamais Vue' which is like when you have never seen or experienced something before. For example when i am in this state if someone gives me a cup of tea i wont know what it is, what to do with it, or how it is relevant to me.

The main result of this is that I have to work very hard to be able to do conventional things and have conventional conversations. The plus side of this is that I don't waste much time, the down side is that I am not really someone to mess with.
I won't get very angry if i get teased or corrected... just very tired. And if I meet someone who is often jokey in the place of true communication then I will eventually just give up - I just can't afford the time and energy. I suspect that this will actually make me a very good Okaasan in the end - one that can be trusted to be steady and honest both by those she looks after and those in the wider world who relate to them.

I know there are social reasons why humans jibe at each other... but as a human i also have the right to make mistakes. Please dont pick me up on little things, it will confuse me. - I am also fairly sure you don't want me to start doing it to you.. and even if i did correct you I suspect you would like me to do so in a gentle way so that you can learn from it. If something is worth doing... its worth doing well.

Please read this through slowly several times before you respond - I may well have upset or shocked you with this message which comes from where 'I' am, which i am humbly aware is not the conventional. Then you can respond in your own time and sincerely... after all words are powerful things and once said, they are never really erased from the world.

Hugs.........

Thursday, 26 April 2012

Struggling

Things are going well for me.. my projects are all off the ground and approved by others which make it so much easier to give my energy to them. So that gives me space to think - I'm tired atm, and I had some painting to do. Easy peasy really... i have done the main detail of a piece i just need to fill in and around with black ink but... would my brain let me do it?

Its so wierd how things i find easy and am quite talented at can become a struggle in the space of a minute. Could i paint today? I lacked coordination, carefulness, strength in my hand, awareness of where lines were... yet still i pressed on. I really wanted to get the project to the next stage before I have another deep seizure and perhaps get wiped for a whole day or two... and I can feel it coming (lets hope i finish this post before i forget i ever opened the computer ;))

So i got it done... so i can take a picture for my other blog. But i knocked black ink all over the floor twice (i managed to clean it ok but geez) and i was not able to walk at the end and it took sooo much more energy and concentration than it normally does.

Really strange when normally it would just be a dance of beauty and pleasure...

so there ^^

Wednesday, 7 March 2012

Limits..

Time is a funny thing for me.. I guess with all the stopping and starting of my brain.
I think that I haven't reached out to others for a certain amount of time and then when i do my research I find I actually have. People seem to do be doing ok.. I guess I should stop worrying about my ability to care.
I have been feeling guilty about my lack of activity on this blog and on my others. I am an intense love for everyone in my life, including anyone who stops by and momentarily reads my words. Even in that instance we have a connection that could not be broken easily, its only a case of numbers and definition that makes it appear heavier or lighter - and goodness knows those human concepts are the most slippery of many i have encountered - there is an irony in there somewhere.

I have been thinking about coping.. and what it means.. I used to be able to cope easier, my seizures when they came were deeper and it was relatively easy to know what was going on (not that they weren't real scary) Now i have a more trembly brain.. it seems the things I feel most passionate about are the things that trigger it *typical* So it comes down to people, their feelings, their contradictions and their worries...

I love you all so much and you are more valid than a lot of the things that get you down. But what about the tangles in our minds... where worries impact on other worries and then take up the place of other worries. As an epileptic i have brain damage.. I think this makes it hard for things to flow past.. they kind of hit a brick wall... and then I am powerless to help.. to help you or to help myself. Then what?

Isn't it wonderful when we can workshop our feelings and grow through them. Or when we can distract ourselves by watching a drama on TV, or play a game where our character moves through stages of feeling. I am thinking that maybe I can't join you in your wild games.. not so much. You run along and have fun and I'll just sit here on the veranda of my mind and admire your energy. When you cut your knee and are truly ready to sit and heal for a time.. maybe even catch your breath.. I'll be right here, ready to share a secret smile.

Wednesday, 26 October 2011

Words and pictures

I have donated plenty words.. now here are some pictures.. I went on my 'first walk'

Hope you enjoy watching and if you have any questions or comments feel free.. I shall enjoy reading them :)

Thursday, 3 February 2011

Integration

Hello again, its been a while...

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