joysong

i will tell more, but just to say that this experience of seizures and healing has ultimately brought so much joy into this life.

today i played my flute with brian eno’s scape to feel this through music. it’s not your typical joy sound, but it’s me :)

sadsong

i don’t know why, but i was feeling so sad yesterday. i’m still off work and sleeping a lot as i heal from surgery. my left hippocampus was removed to end my seizures. so far so good, but there’s a way to go. i start rehab tomorrow. anyway, i played my flute with brian eno’s scape. now i feel better.

i didn’t mic it properly, so sorry for the distortion. i have to learn how to mic flutes.

She’s Lost Control by Joy Division

My favourite song by one of my favourite bands from days when I was young. It’s a song Ian wrote about a girl with epilepsy. I’ve never understood why he didn’t write about his own seizures, but on every level, it feels of the strange fear and broken thoughts that can come.

Confusion in her eyes that says it all.
She’s lost control.
And she’s clinging to the nearest passer by,
She’s lost control.
And she gave away the secrets of her past,
And said I’ve lost control again,
And a voice that told her when and where to act,
She said I’ve lost control again.

And she turned around and took me by the hand and said,
I’ve lost control again.
And how I’ll never know just why or understand,
She said I’ve lost control again.
And she screamed out kicking on her side and said,
I’ve lost control again.
And seized up on the floor, I thought she’d die.
She said I’ve lost control.
She’s lost control again.
She’s lost control.
She’s lost control again.
She’s lost control.

Well I had to phone her friend to state my case,
And say she’s lost control again.
And she showed up all the errors and mistakes,
And said I’ve lost control again.
But she expressed herself in many different ways,
Until she lost control again.
And walked upon the edge of no escape,
And laughed I’ve lost control.
She’s lost control again.
She’s lost control.
She’s lost control again.
She’s lost control.

Epilepsy is Dancing by Antony and the Johnsons

This song and video by Antony and the Johnsons is such a beautiful drawing of what that in-between seizure world is like for me. There is no way to physically describe it, but this is such a lovely abstract painting of some of the things I’ve seen. Some joyful and light. Some dark.

This video was produced by the Wachowski Brothers. There’s an even more beautiful post of it here.



Epilepsy is dancing
She’s the Christ now departing
And I’m finding my rhythm
As I twist in the snow

All the metal burned in me
Down the brain of my river
That fire was searching
For a waterway home

I cry “glitter is love!”
My eyes pinned inside
With green jewels
Hanging like Christmas stars
From a golden vein

As I came to a screaming
Hold me while I’m dreaming
For my fingers are curling
And I cannot breathe

Then I cried in the kitchen
How I’d seen your ghost witching
As a soldering blue line
Between my eyes

Cut me in quadrants
Leave me in the corner
Oh now it’s passing
Oh now I’m dancing