I had my first tonic clonic seizure on top of one of my first hairdressing clients. I was 17. Split open my head and woke up in the back of an ambulance with a bunch of scrambled thoughts and the paramedics talking to me in what I thought was a foreign language.
In retrospect I had been having Complex Partial seizures for a couple of years but hadn’t told anyone because I thought I was going mad. Also because as anyone who has epilepsy knows, how does one explain those unexplainable feelings. Unfortunately I developed epilepsy due to my dad using my head as a punching bag while I was a teenager. However, I was put on a minimum dose of Dilantin and kept on that even though I had I several more seizures.
Determined not be a hairdresser forever, I had always wanted to go to art school so I saved up and started art college. Unfortunately my memory is so dreadful because of all the seizures and medication I was on, I only have a limited memory of my time there, but apparently I did very well and had a blast. I recently met with some old friends from that time and they filled me in chunks of things that had happened to me that I have no memory of, like the time I had a seizure and insisted on going shopping straight after, wandered the cosmetic counter putting all sorts of random things in my bag. The shop owner locked the front door and called the police thinking I was some mad shoplifter. My friend explained to the police that I had epilepsy , they called the college who confirmed that even though I looked weird (black spiky hair, crazy make up and ripped and torn black clothes) I was in fact epileptic and prone to strange behavior ! I was let go. Clearing out my parents house recently I found a postcard from myself to my mother, sent from Ireland about 20 years ago. I have no memory of being in Ireland. According to my lovely friends apparently I had made my way from London to the west coast of Ireland, stayed a week (it sounded lovely, seemed that we stayed in an old school house overlooking the sea), also transpires I have no memory of holidays on a remote island off the coast of Scotland, Devon, Cornwall and who knows where else?
Anyway, keeping a very long story short, I moved to Los Angeles and even though I had epilepsy I became a boxer, much to the horror of my poor neurologist. But as I said to him, I already have epilepsy, whats the worst that can happen ? Strangely enough it seemed the intense training schedule seemed to keep the epilepsy at bay. However after four fights, I realized I was a rubbish boxer and trained to be a yoga teacher and massage therapist instead. I’ve never let epilepsy stop me from doing anything I wanted to do, I travelled around Egypt, Europe and Borneo alone to see the orangutans (I do remember that), even though I had a seizure there and the hostel owner was screaming that I had the devil in me. Been on so many different meds, with varying horrific side effects, but am now on Lamictal and Vimpat, with Ativan as my rescue drug should I feel a seizure lurking. The seizures are managed but not gone.
All my artwork now has developed from my experiences and living with epilepsy . I made a film last year called Sacred. The ancient Greeks called epilepsy the ‘Sacred disease’, in the mistaken belief that people with epilepsy
were in touch with the gods and we had access to the Delphic properties of prophecy. I filmed myself over the course of five days while having intense seizure complex partial seizures. I have no memory of filming any of it, so editing it was very, very strange, leading me to the concept of “am I who I remember or am I who I forget”.
My last piece was a video installation ‘Alchemy Unveiled’, I had committed with three other artists to doing a self portrait every day for a year, we would then send the images of them to each other. We used anything that came to hand, I would sometimes paint using nail polish, bleach etc. The only criteria was that it had to be done everyday. As I put all my images together onto a film, something became immediately apparent. For the two weeks leading up to a seizure , whether tonic clonic or clusters of complex partial seizures, the work I was producing became darker, lots of deep reds and black. The brevity of the effort I put into the images became apparent, they were short, sharp almost angry, more powerful and intense. Put altogether it was possible to document the onset of the seizure, subconsciously my brain knew a seizure was coming.
Also made a short film called “Don’t Panic” about what to do if you see someone having a seizure, made it quite light hearted and funny so people hopefully will remember it.
Anyway, sorry this is so long, but just to wind up, meeting Cassidy and the lovely Lara at the Hidden Truths exhibit felt like great weight lifted off me. After talking to them I realized its ok to say to people “sorry I don’t remember”, in fact I shouldn’t beat myself up for being forgetful, we should just live in the moment. Its also ok to take care of ourselves and have compassion for ourselves and if the meds make you tired and exhausted, its ok to say to friends , “sorry, I can’t come out, I don’t feel well”. I’m hoping Cassidy knows what life changer that is for me. So today I feel like seizure is coming so I don’t feel guilty to lie on the sofa and just read a book. Thank you, Cassidy, you inspire me.
P.S. The films are on www.vimeo.com/switchbitchery and the artwork is on www.angelastimson.com