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The Perspective
The Perspective

March 26, 2019

Finding my voice: My epilepsy diagnosis

It’s Purple Day for Epilepsy awareness – Kiren Gill, Sr. Communications Specialist at SickKids provides a perspective on what it was like to be diagnosed with Epilepsy as a teen.

Losing time

What is it like to “lose” time? For me, it was almost imperceptible and became an ordinary occurrence. When I was 13, I started to notice it on my bus ride home from school. As my stop approached, I would be ready to get off, and an absence seizure would hit. I would regain consciousness and find that I was well past my stop. In a daze, I would get off the bus and walk the extra distance home, not thinking too much of it. Because my seizures were primarily absence at first, no one would’ve known that I was having them unless they paid very close attention.

It’s difficult to know what is happening to you when you can’t really understand it. Unlike a skinned knee or a broken bone, I didn’t have a direct or acute experience of pain that might have triggered an analysis of what was happening to me. The nature of consciousness is continually being explored by scientists – it’s hard to expect a 13-year-old to know what it is and identify when it’s gone, especially if you don’t fall over or aren’t “out” for a long period of time.

It was similar at school – I was losing parts of lessons, or would wander off on my own. Then, I would feel agitated, and try to join in again with whatever activity was happening. I subconsciously developed coping mechanisms that would allow me to integrate any seizure activity with the rest of my day to appear “normal”. I was often rude after a seizure – now, to be fair, this can be partially attributed to post-seizure agitation, and in greater part attributed to a sassy teenage attitude.

I’m not sure how long the seizures were occurring or when they started. I feel fortunate that I never walked into a road or fell while this happened.

Diagnosis

Later, I started to develop a different type of seizure – usually, part of my head would move repetitively toward my shoulder. This would happen in the early morning hours – perhaps three or four in the morning. If I try to recall it now, it seemed like a buzzing static-like sound would precede the seizure and then it would start.
I felt betrayed by (and scared of) my body – this thing that was supposed to help me through life and enable tasks felt like an enemy. I also felt that I didn’t have the words to describe what was happening. In the vaguest of terms, I could say I felt something was wrong, but I didn’t know what it was.

My parents didn’t understand at first, and for a few months, they felt that perhaps I was having nightmares based on my descriptions. I would drift off after the seizures, exhausted, and it felt plausible that maybe they were just bad dreams. However, eventually, I had a seizure and was able to take it step by step, one hand on the wall, to guide myself toward my parents’ bedroom to let them know what was going on.

I woke them up and tried to say “Look! This is the thing that happens to me – I’ve been telling you about it. It's happening right now!” In my brain, what I was saying was very clear.

What came out was garbled, and I knew something was wrong because of the looks on their faces. Although I felt very scared already, this sent me into a near panic – now my words weren’t working. We went to a hospital and I was diagnosed with epilepsy and put on medication. It took awhile to find the right dose, and eventually we did. I have been very lucky to have well-managed seizures for the last 19 years.

During that time, I went to university and did an undergraduate degree in English, and eventually did my Master’s in English, too. I started to build a career in Communications – using words in precise and creative ways every day as tools to help myself and others share ideas, describe concepts and reach audiences.

Present day

It’s inspiring to me that after all this time, I work at a hospital with such committed staff that help children who are like I was have a voice and find treatment.

I decided to write this piece to close the loop in a way. As a teen, I was unable to articulate what was happening to me. I felt trapped by my body and my inability to describe my experience. I couldn’t reflect on what was happening to me, much less describe it. Now, as an adult, when I describe my experience and reflect on it, I feel like I am giving that teen a voice.