'I'd be fully active, but unconscious:' My life with epilepsy

My seizures were different than what most people think of, when they think of a seizure. They started when I was 16 years old. I started doing really unusual things. I would talk gibberish, smack my lips as if I was thirsty, pick at my clothes, remove my clothes and walk around as if I was unconscious. When I would regain awareness, my family would ask, “Are you OK? What’s up?” and I would respond, “I’m fine,” because I didn’t remember a thing. After a few episodes, my parents were like, “Something’s not right.”

I had MRIs and EEGs and that’s when my doctor realized that I was having seizures and diagnosed me with epilepsy. I had no idea what epilepsy was. I think I had only heard the word epilepsy once or twice, and when I heard the word “seizure” I pictured someone falling to the ground, shaking. I had no idea that there were other types of seizures.

The doctors put me on medication and that stopped the seizures for a while, but after a year they started coming back. I was worried and confused. They then put me on a second medication, which worked for about a year. Brain surgery was put on the table, but I said no at first.

I would go months without a seizure, but then would have a whole bunch of them —sometimes had two or three in one day, or many within a span of two weeks. I’d be fully active, but unconscious. I even went outside one night in the winter, in my pyjamas. And when my stress levels would get high, no medication worked.

It wasn’t until I was 24 that I considered brain surgery. I travelled from Sudbury to London, Ont. to see whether or not I was a candidate. Doctors set me up with something called an epilepsy monitoring unit and found that the seizures were coming from my left temporal lobe, so they suggested removing part of it.

I was very scared leading up to the surgery because the part of the brain that they were going to take out affects your speech and memory. I was afraid I was going to come out of this with a very serious speech impediment or terrible memory skills.

They were affected, as expected, and I spent the next year going to the hospital a few times a week to see the people supporting my recovery, including a speech pathologist and a recreational therapist. We did exercises to work on my memory. It’s still affected from the surgery, but I’ve learned how to live with it.

After the surgery, I still had seizures occasionally, even though I was still on medication. This is because my doctors left part of the temporal lobe intact (The surgeon had been trying to save as much of my speech and memory as possible.) They weren’t as frequent but I was frustrated — what was everything I had been through for?

A year later, I went to college for social services. I came to Epilepsy Toronto to do a placement, and realized I could relate a lot more to some of the patients than most social service workers. When I graduated, I made the move to Toronto to work. This sounds silly, but a big part of that decision was the public transit system.  In Sudbury, the buses don't run 24 hours. And in my field, jobs don't have Monday-to-Friday, 9-to-5 kind of hours. I can’t drive with my condition. Living in Toronto made me feel like I had so much more freedom. I just loved it.

I have had seizures in public here, on my own. They can last from 30 seconds to three minutes. Sometimes when I’m on transit, I’ll skip a station without realizing it until afterwards. And sometimes I’ll get a bit of an aura. And when I come out of a seizure I don’t necessarily come completely out of it. It takes a bit of a time to really come to.

But now, thankfully, I can go weeks without one. Stress is my leading trigger. It’s often many people’s leading trigger. I’m trying to get healthier, especially by going to the gym. Music is one of the ways that really helps me relieve stress, and sometimes I’ll even take the long way home on the TTC just to listen to my music, just to unwind.

I’ve been working with a gentleman with special needs for five years now, as part of an agency that supports people who don’t want to live in group homes. I see him four times a week. He’s got two other support workers as well. I’m the coordinator — I deal with his medical records, appointments, his bills.

I’ve had seizures at work, but I don’t worry about it all the time – I work with people with special needs and have special needs myself. I live with this every day, and don’t let it hold me back.

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