Artists Against Epilepsy: An Origin Story

As you may have already noticed (if you’ve seen any of my Instagram page), I’m ever so slightly (massive understatement!) into comic books and comic book art. I have been since I was kid. So it made sense, to me anyway, to approach my introduction to my experience of epilepsy in the style of a comic book origin story. It was because of my experiences that I was encouraged to write this blog and hopefully reach out to others who may feel the same or give an outlet to people who may feel more comfortable expressing themselves and their feeling creatively.

Roughly 13 years ago now, I went out with some friends for a drink to celebrate the New Year. When we stopped to meet a buddy’s girlfriend, IT happened. A group of other guys took a dislike to us and we ended up in a ruck. It was only afterwards – after coming to – that I found out my head had been banged repeatedly into the curb.

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A month later, I had my first seizure. I mean, it was really weird; one minute I was watching TV in the front room with my folks, the next (well, actually about 3 minutes later), I opened my eyes to find I was in the hallway, a bruise on my head and I’d soiled myself. I wasn’t familiar with epilepsy at all so this was all extremely frightening at the time, not only for me but for my family as well.

A few more episodes later and I was diagnosed with Juvenile Myoclonic Epilepsy (JME for short), a seizure type  that includes myoclonic jerks (I twitch in my arms and neck), tonic-clonic (dropping to the floor and jerking rapidly) and absences (honestly, I’m not daydreaming or ignoring you!). Later investigations lead some specialists to believe that the head trauma I had received coupled with meningitis as a child had brought us to this place. I also had some elements of Non-Epileptic Attack Disorder, possibly due to the brawl, which made some of the seizures hard to treat.

Now, I’ll be honest, I had no idea what to do. There wasn’t much literature to read and support groups were hard to find. My nurses are brilliant and are also available at the end of a phone but they have an incredible workload. I trialed different medications and am fortunate now to only take on rescue remedy in the event of seizure clusters.

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Before that though, and here’s what lead me to art therapy, was how I felt personally. No one prepares you for how epilepsy will make you feel. I considered myself to be quite an outgoing, confident guy. I had a large circle of friends, I went out and socialized a lot but, following the initial seizures, I found that I just wanted to isolate myself. To be frank, I was scared. I didn’t know when the next seizure would occur, I was embarrassed about what people would think of me and I didn’t want to admit that I was a person with epilepsy.

Crippling anxiety grew out of this. I also became depressed. I lost jobs. I stopped seeing my friends. At one point the seizures grew so bad, I was unable to hold my daughter so that added to my low self-esteem. It was grim.

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Luckily, my wife has always stood by me. She pushed me to try and express myself in other ways. She had to cope with not only my seizures, looking after me in a post-dictal state but also my low mood. She knew I wasn’t (at the time) very open about my feelings and I needed a new focus, something to break the cycle of feeling down. Turns out as well that one of the triggers to my seizures is stress and anxiety so I was perpetuating the whole thing myself anyway!

She pushed me to seek a new avenue with a friend who had remained close and I practiced as an apprentice at a local tattoo studio. This guy was great – he knew about my seizures, my triggers and what to do in an emergency – and he said, in order to become a tattooist, I had to draw every day.

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Seems mad now, thinking about it. I used to draw when I was a kid but, personally, I was never down for art at school. Anyway, I tried and discovered, rather than having any discernible talent, that I enjoyed it. I could lose myself in the sketching and it gave me a focus. Being able to finish a piece of work meant that I had something to be proud of at the end – a sense of achievement.

I visited the Point, an art gallery in Doncaster, and found that they had an art group that met weekly, specifically for people with hidden illnesses, to chat, work on projects and just have somewhere to go where they didn’t feel alone.

It was amazing. Everyone was welcoming and I made some great new friends. It made me feel part of a collective and, after visiting regularly, I felt some of my negative feelings shift. Key to all this was that I no longer felt on my own. My problems weren’t the worst in the world. In turn, this helped me manage my seizures.

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I try and draw everyday now. Whether it’s a simple sketch or a watercolour, it helps. I feel better about myself. I noticed that I could handle my seizures better. And that prompted me to develop the Artists Against Epilepsy blog – an online way of sharing art, talking about epilepsy and the other issues it presents and attempting to help people feel a little less alone. No matter what your skill level or what medium you prefer, I’d love you to get in touch so we can share it on this forum and all push each other to make some really cool art!

And it means I can smash some superhero art while we’re at it!

I hope to hear from you soon!

Rob

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Rogue Anteater Inks

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