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.

Words and pictures

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

http://www.youtube.com/watch?v=7kWPkBWGt0s

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

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

Pile Up

When i have a seizure it is like a pile up in the brain. Too many objects with too many aspects and even ideas of themselves all in one moment. Like a hose thats been stepped on maybe.. the water flow restricted so it is faster and seems to have more of a presence as a result.

I have so many ideas and ways i could change things and make things different and i'm not afraid of work... if i see its not being done but should be hey! ill do it... then along comes another seizure and i am a mouse again. Odd.

Its good to be ambitious isnt it? Aren't many entrepreneurs and non depressive people applauded for it? Sometimes i think i should be like a queen or empress.. people could come from miles around and ask me what they should do. And i would have an answer for all of them i know i would... send them all off into the world with renewed focus.. taking the ideas that fly from inside me and embodying them for the benefit of those who were experiencing the hole in which the idea fits.. but hadnt quite got round to distinguishing the problem as a hole.

Maybe those angel beings who are made of light feel like this.. maybe i am a step down from that.. though not quite human either. So i experience slightly less frustration than the non corporeal beings i guess. I should be thankful for that. I can hug people and i am here when the people ask me for answers.

I wonder though... just how reliable am i?... comparatively of course...

Now you have the pile up in your mind maybe...

or something like it :-p

Apologys in advance,

Emily x

Ponderances

What a year 1009 has been! I have been used to my life gradually speeding up as i have grown older but this year has stretched out to feel like at least three. Perhaps it is due to my lazer eye surgery i had last november. My whole experience of things has been changed through this, everthing seeming crisper and having new aspects i could not see before (on many levels). The sea was the thing that got me most if i have to single out something from this new mandala i live in. It sparkled in way it had never done before without the glass reflecting experience away and i was able to walk down to it without worrying about whether my glasses where safe while i was away, leaving clear vision behind and experiencing the seascape as a blur. No, i could walk down to the sea, watch the seagulls and the waves in their fullness, happy to glance at my children knowing they were safe in a moment. It made me more brave to enter the wild sea surrounding the devon coast this summer, even with its chilling promises ^^ Using meditation as a prompt from my shivering state i imagined it to be an ocean of wisdom, my lover and manifestation of blissfull mind and dived right in emerging to watch the cliffs and builders of sandcastles with unclouded eyes. To be able to view my children happy and safe on the beach whilst surrounded by the peaks and troughs of the playful sea made me laugh and cackle, the Kate Bush bird song which lines the bowl of my petit mal joining in with me.

Leaving the council has also made a difference to me, giving me more time to watch and work with my energy. Sharing my sparks of inspiration in Second Life as meditation and querky workshops i have been achieving much more with bodisattva mind work and am growing myself into a fuller beast :-p

A post on another forum finally prompted me to write here... so here is that piece too.. smiles xx

"The interesting aspect of male and female in Buddhism is a celebration of them in their different forms. The male is associated with the Method or Compassion path whereas the female is associated with the Wisdom path. Where lineage is concerned one tends to find mainly male spiritual guides but rather than an indication of them being above women it is more an indication of their propensity to compassion and method - i.e. writing down what teachings and inspirations they have received and establishing systems by which themselves and others should put them into practice. The women are all there in the 'background' delighting in their propensity to wisdom; their wisdom acknowledged as the root of the male translated systems. This also relates to the 'dakini' who dances the path of wisdom in the 'sky', an inspiration for male practitioners and lamas alike."

My resignation from the local council was in the paper - i post it here. I was pleased i think it communicated well and help to raise the profile of different types of epliepsy - although it got complex and partial the wrong way round but hey preaching to the unconverted here ^^

Illness forces Emily to quit town council

Tuesday, May 12, 2009, 07:00

TOTNES mother-of-two Emily Rogers has resigned her town council seat for the second time in four years as she faces a continual health battle with epilepsy.

The 30-year-old artist mum was the youngest person on the town council when she reluctantly handed in her resignation last week.

Faced with suffering daily seizures which left her exhausted, she decided she had no choice but to stand down.

Emily said: "It was a very difficult decision for me. I wanted to help the parents and children and disabled people, but it was so frustrating not being able to fit in with the timing of the council meetings.

"I am quite passionate about supporting people in the community and representing them and it became so frustrating not being able to do so."

Emily has suffered from epilepsy since she was 10 years old, but over the last two years the nature of her illness has changed — and drugs prescribed for her either left her 'hyper' and nervous or turned her into a depressive.

She said: "My epilepsy has changed. It never used to be like this. I used to have a few complex partial seizures a month. Sometimes now I am having three or four a week. I am having one or two simple partial seizures a day."

She said a simple partial seizure leave her staring into space for a few minutes while a complex partial seizure leaves her disorientated without a grasp on reality which can last for up to 30 minutes. All the seizures leave her exhausted.

Emily, who lives with her husband Steve and two children Misha, eight, and Poppy, four, in Culverdale, first won a seat on Totnes Town Council in November 2002.

But three years later she and husband Steve, who was also a town councillor, both resigned in protest over the way the council was being run.

Then two years later they both stood again in the 2007 May elections and Emily pipped her own husband at the post by just one vote to win back her seat.

Emily and Steve invented the board game Buddhawheel, a game based on the Buddhist wheel of life involving players working their way up the reincarnation ladder, which has sold around the country and abroad.

Emily is a Bhuddist and said her meditation has helped her cope with her epilepsy.

"I am not freaked out by what is happening where I used to be before I had experience with meditation," she said.

Totnes Town Council is now faced with advertising the vacant seat left by Emily's resignation.

If enough local electors demand there is a by-election the council will be forced to hold one.

If that does not happen the town councillors will have the option of co-opting a new councillor.

Creation of an Artist

Good days, plenty sun and gardening :-)

We have a redevelopment soon to happen near us - bungalows being knocked down for flats. We are saving the plants that have become established in the gardens there by rehousing them in ours. Shove up weeds ^^

Interesting thing about the music artist Prince and how his epilepsy transformed him into a flashy performer...

Prince reveals epilepsy

What prompted the flashy, eccentric persona that helped make Prince a king of the music world? The singer was compensating for a painful childhood struggle with epilepsy, he revealed this week. "I've never spoken about this before, but I was born epileptic," the reclusive 50-year-old pop star told PBS host Tavis Smiley in an interview. "I used to have seizures when I was young. My mother and father didn't know what to do or how to handle it, but they did the best they could with what little they had." Prince also cited divine intervention in helping him cope with the disorder. "My mother told me that one day I walked in to her and said, 'Mom, I'm not going to be sick anymore,' and she said, 'Why?' I said, 'Because an angel told me so.' " But his struggle didn't end there. He was often teased in school, he recalled. "And early in my career, I tried to compensate by being as flashy as I could and as noisy as I could."

I love to act from very early on for a lot of similar reasons. Lots of my peers enjoyed 'fame' but my character parts allowed me freedom to breath into being odd and feeling different. People who complimented me would get my reply 'its not me up there on stage' my disconnected epileptic ego getting some respite of the rush to be one of the 'ME's"