Epilepsy awareness project is ineffective

It’s been almost two years since my last seizure.

Doctors talk a lot about “auras,” warning signs or premonitions of an impending episode, but the experience is a lot more nuanced and frightening than any pamphlet about epilepsy can tell you.

There are six different types of seizures, ranging in severity from muscle stiffness and rigidity—tonic—to a grand mal, or generalized tonic-clonic, categorized by convulsions and unconsciousness. While these can be frightening enough to witness, they are excruciatingly terrifying to experience.

I didn’t see an aura the first time I seized. I didn’t hear a ringing in my ears, or feel anything in my limbs. Instead, I felt my throat close up, and my muscles stiffen. I was acutely aware of my body moving of its own accord, twisting my arm away from my face, stiffening my legs and restricting my breathing. I was awake, and I was terrified.

The second time I seized, I didn’t receive any warning either, but this time, I was lucky enough to be unconscious. It was like I had blinked, opened my eyes again, and the seizure was over. Doctors couldn’t tell me why the two episodes had been different—or why they were happening in the first place.

“We don’t know what’s causing them,” said my neurologist. “You have one-one-hundredth of a blip on your MRI scan. That’s all we can say.” I came home with brochures and pamphlets full of information on how to deal with epilepsy, counselling services, seizure procedures, and medical treatments, but I didn’t need any of them because none of them held any answers for me.

If someone had introduced me to a program, computer software, or any literature pertaining to seizures and said, “Look, this is what to expect,” I still would have been ill prepared for an episode. No amount of diagrams or first-hand accounts from people could have made my first seizure less scary, or helped me deal with the aftermath of it. The problem with seizures and epilepsy is that they are largely uncharted medical territory. Though they can stem from brain injuries or tumours, genetic predisposition or other medical conditions, neurology still has not come up with answers as to why our brain misfires in a way that causes our bodies to react the way they do.

When I learned that a group of Ryerson students created a program that mimics a seizure in an effort to raise awareness for epilepsy, I was surprised: the effort, though well-meaning, seemed misguided.

Because epilepsy and seizures both stem from our brains, the experience of every epileptic, or anyone that seizes, can be vastly different. Some are photosensitive, meaning they could seize if a light is flashing at a particular frequency—even then, a frequency that affects one person might have zero effect on another. Some do, in fact, experience auras, blurry coloured outlines around people or things. Some just get an indescribable feeling. Even the degree of seizures can vary: for example, one person’s grand mal might be far more severe than another’s.

Although epilepsy awareness is still scarce, trying to educate people about such a nuanced condition by forcing them to experience it for themselves is not only sadistic, but misguided. I would never wish those experiences on anyone. To force someone to experience that type of paralysis, trying to yell for help and not being able to make a sound, is cruel. But also demonstrating to someone that this is the way a certain type of seizure feels, or that this is a way to predict an oncoming seizure isn’t accurate. It’s almost offensive to think that something that depends so heavily on individual experience is being generalized and categorized then presented to the masses, branded as an effort to “educate.”

This causes problems—not only because the general public then thinks that epilepsy is cut-and-dry, and that the condition falls neatly into the descriptions and categories they’ve been exposed to, but also downplays how serious the condition can be.

I’m not sure how someone would go about “reproducing” a seizure, but no matter how different ways someone tries to prepare you or show you how it feels, you will never be prepared and you will never know how it feels until it happens to you.

This story was first published in The Ryersonian, a weekly newspaper produced by the Ryerson School of Journalism, on February 5, 2014. 

The language in paragraph eight has been changed since it was posted (Feb. 13).

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