“Looking for a saviour on these dirty streets”

In Charge / not in charge

2016 bought with it a fierce determination to ” Get back to normal” but after 8 admissions to hospital and many dramatic floor somersaults on my part, I was finally told I have Temporal Lobe Epilepsy. Weirdly this wasn’t what I was expecting. ( I was hoping it could be attributed to my anaemia or irregular heart ❤️ but no, and secretly I knew what was going on as I could feel it, but I like to doubt my senses all to much ( something I’m constantly working on!)

This was not noted on my wish list and things to do before I’m 40 and was most definitely a little bit of an emotional and physical blip. Blip! More like an emotional avalanche where normal life has not resumed, but I’m glad that  a new  ( different and slower) life has continued to blossom.

I am happy to accept that I have to manage this condition and  have finally accepted that sometimes I am at the humble mercy of my beautiful  peculiar brain.

This has profoundly affected my sense of identity and I have grappled with this sense of loss & knowing my epilepsy was, and is a part of me and coming to terms that epilepsy is an unwelcome guest.  but it is  one I will be polite and courteous to, however  it took a inconsequential incident to realise what really irks me about my epilepsy……  control …..

2016 : It’s the week before Christmas, I am with my son (5) and we have been to see the Christmas Tree Festival at the Cathedral. We have written prayers for “world peace” ( My son) and ” More Empathy and Kindness”  ( Me) and hung them on the prayer tree.

We felt blessed and cheerful, brave and hopeful, festive.

We feel merry and light and cheered by the many pretty  lights. It’s a good day.  There have been no auras and no thoughts of illness.  All  is well.

We are watching buses at the terminus and my son is filming the buses arrive and depart. A tedious mundane daily task of people getting from a to b, journeys home, journeys to the shops, onwards and  forwards we go.  It makes my boy happy, transport and trains,  & so we idly bimble and  waste half hour or so just watching the busy December day unfold.

And then she falls, the elderly lady with the yellow coat and white hair.

She stumbles as she gets onto the bus, and with a loud bump she falls to the floor, bags falling, arms flailing and then so much blood.

I watch as people whom I think are coming to her aid, step over her, get on the bus  and obstinately look the other way, and I feel my heart pound. So we march forwards,  we get on the bus. We care!

I help the lady, I elevate her leg, the bleeding ( from a varicose vein ) is pooling in a big red mass on the bus floor. I soothe, I question, I assess, I am efficient. I am calm and clear as I ask for more tissues to stop the bleeding. I check for other injuries. When I am satisfied her wound is superficial and she is ok, I get off the bus and we walk toward the train station.

I am wiping off the strangers blood from my hands with a tissue and chatting to my son  whom is curious with many questions about what has just happened.

He says to me ” Mummy , you saved the day, but why are you ALWAYS in charge?” And I said

” well  that’s just what I do, I help!” & automatically  It occurs  to me like some giant biblical epiphany that I just want to be the one who helps. ( the obvious is often oblivious to me!)

I’m keen ( Keen is my middle name!) ( infact, it’s borderline hysteria, I hear my own voice telling me to be good, constantly, as  it’s intrinsically linked to my self esteem, another issue?!)  to show people that I want to help, to help them.

I don’t know how not to be any different and that is why I struggle with epilepsy because I like to be the one in charge, the one helping and not the one who needs help and assistance.

I’m learning to accept help and slow down. I’m helping myself. ( cringe!) ( but it’s a stage ahead of before which was DENIAl) It’s a hard lesson to admit vulnerability and feel  that you are not always in control. ( free-falling!) but  I figure control is a fabricated illusion anyway so let’s just step into the unknown hand in hand…


we walked on….. chattering

my boy, as  he held my hand,  tenderly  whispered to me  ” I want to be like you, Mummy, a helper”  and gave me a hug and I didn’t feel vulnerable, I felt Invincible!

I swooned and smiled till my face hurt , despite epilesy, life is good, and I live it hopeful and optimistic.

Merry Christmas & Happy New Year!

#Epilepsy Speaks