Happy Purple Day!

In light of Purple Day, the University Health Network in Toronto has published an article about my surgery for epilepsy and where I’m at today. Tell me what you think.

purpleday_donlands

Last year, Purple Day on March 26th was declared an official day by the Government of Canada. It comes from an international grassroots effort dedicated to increasing awareness about epilepsy. Every year, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.

Here is the best part: it was started by Cassidy Megan, a young girl in Halifax, when she was nine years old.

Epilepsy Toronto is hosting some excellent events and I’ll definitely be at The Purple Party.

Enjoy wearing the beautiful colour purple!

The Rip by Portishead

“The Rip” by Portishead came out in April 2008 — the same month I had my first grand mal seizure. Actually, at that time we didn’t know it was a seizure. I was home alone and had no memory of why I awoke on the tile of the bathroom floor with chipped front teeth and a black eye. The doctor thought I may have had a heart attack, so I wore a loop recorder for two weeks. No problem registered, so we dismissed the event as one time only. (The next grand mal seizure happened in October 2009 with many witnesses on the subway. Mystery solved.)

Back then, I was listening to this song over and over because it was so in line with the feelings in my heart. I came across it this week after a long time and realised that with brain surgery, I am once again in such a state. In my mind, there is this sweet light that sees all the beauty just beneath everything we perceive as life. Yet still, at times, there are shadows that come and I am so sad.



As she walks in the room, scented and tall
Hesitating once more
And as I take on myself and the bitterness I felt
Realize that love flows

Wild white horses, they will take me away
And the tenderness I feel
Will send the dark underneath
Will I follow?

Through the glory of life I will scatter on the floor
Disappointed and sore
And in my thoughts I have bled for the riddles I’ve been fed
Another lie moves over

Wild white horses, they will take me away
And the tenderness I feel
Will send the dark underneath
Will I follow?

Wild white horses, they will take me away
And the tenderness I feel
Will send the dark underneath
Will I follow?

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