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!

Two Views – video art

Sometimes when having a seizure, the visions on the dream side are so beautiful. What is happening physically can be disturbing for others, but I’ve never remembered anything about it.

This video tries to show both sides. The seizure footage is from when I was in the Epilepsy Monitoring Unit at Toronto Western Hospital in November 2011. The watercolour look of lotuses gives the feeling of what I have sometimes felt in my mind while in a seizure state.

Many thanks to Toronto Western Hospital for giving me the footage of my seizures for use in storytelling of the experience. The music I made in Scape, which is amazing. For the lotus paintings, I found videos from YouTube and applied many plug-ins to make the look of watercolor dream vision. My gratitude to garth0334 and theperfectlotus for their beautiful and spiritual videos of waterlilies.

She Plays With Monsters – downtempo

Sometimes interesting stories unfold in the dreams that happen during seizures. They are hard to describe, but in these dreams I have seen strange monsters. The monsters can be scary in the moment, but later one can see that they are just like the imaginations we have while playing as a child.

As I’m sure you can hear, I am still new at creating electronic music and still have much to learn. I would love to hear your thoughts.

I created the music on TNR-i and then mixed it with this beautiful recording of children playing by AGFX from Vancouver.

subtlebeing on soundcloud

A Seizure’s Lament – audio art

There is a sound that I will never forget. It’s a sound I make, but the thing is I’ve never heard it myself. That’s because when it comes out, I’m always unconscious in an epileptic fit.

Based on the accounts of those who have witnessed me, I went in search of the sound online. I sample what I found at varying speeds — speeds as low as three percent — in order to create an imagined soundtrack for my seizures.

Making this audio piece, I felt sad. So at the end of the process, I sang to it and mixed that in too. The video is from one of the jellyfish tanks at the Vancouver Aquarium.

A Seizure’s Lament was first commissioned by the 2011 Deep Wireless Festival in Toronto and aired on CBC Radio’s Living Out Loud. It later aired on CBC Radio’s Tapestry and was featured at the Third Coast Filmless Festival in Chicago and PRX’s How Sound show.

Fog Changes Everything – downtempo

New song that is a mix of live flute playing, downtempo mixing, and someone explaining what it was like to see me have a grand mal seizure.

It’s interesting that when it comes to grand mal seizures, I’ve never been able to remember the seizure itself. I wonder if that’s how it is with everyone. Sometimes when it’s ending, I awaken and can sense what is happening around me, but I am not able to keep my eyes open or speak. Once, my mouth was still clicking and a weird growl was coming out, but the seizure itself was over.

Here my friend and coworker, Steve Wadhams, describes what he saw when I had a grand mal seizure in his office one afternoon.

By the way, Steve is a highly respected and brilliant documentary maker at CBC Radio. Currently, he is producing Living Out Loud — one of my favourite shows.

This is my first downtempo piece… Again, all comments welcome! Positive and negative. I need to learn :)

subtlebeing on soundcloud

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?

Hivemind – dubstep

This song is about the strange feeling some epileptic seizures have where there is panic and anxiety within and yet there is also a sense of a greater union with all that is. Like how a hive of bees works together.

I’m trying to learn how to create dubstep and this is my first try. There is a long way to go! Please – all thoughts and ideas most welcome. :) My approach is to create the track and then play my flute above it — a joining of electronic and natural.

Deep gratitude to two friends for all their guidance: dBNAIR (who is an amazing singer) and Laurence Stevenson (who is an amazing violin player).

The bee sounds are from some hives I help take care of at the Amma Canada Centre in Georgetown, Ontario, as well as a beautiful recording by Benboncan. Thanks also to luketande for a great bass line.

The picture is of a bee who rested on me for almost half an hour while I took care of her hive.

subtlebeing on soundcloud