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Breaking the Wall of Fear: Epilepsy’s Tainted Name

Emily Tithecott, Sault Youth Association for local2 sault ste. marie
June 14th, 2012 at 12:56pm



This article is a column or editorial.
The opinions expressed here are solely those of the author and do not necessarily reflect those of LOCAL2.

GOAT


Credit: SYA

It’s a curious look on the face of a person who has just discovered that a fellow colleague, student, neighbour, or friend has epilepsy. “The Look”, as I have grown to call it, can be accurately described as a mix between the confusion of someone who has just seen a UFO, and the nausea of one who has just found a bug in their salad. But mostly, it’s of fear. This fiery wall of discomfort has been known to immediately shoot up at the mere mention of “epilepsy,” and instantly become a blind shadow in the back of people’s minds of fear, uncertainty, and the potential of danger. What is very important to consider when it comes to epilepsy is that the disorder itself is never black, nor white: it is always shades of grey, and when faced with it, assumptions should not be made based on the portrayal in popular media.

Go ahead, close your eyes and picture a live seizure in your head. What does it look like? What is the person doing? What are you doing? Or do you even know? At times, seizures can be very difficult to spot, depending on what the situation is, and most are fortunate enough to never have the experience of being in the presence of one. But how can we be sure? I know that I actually have an average of 10 seizures in class each day, and nobody would ever guess. For the most part, not even my teachers can recognize my Petit Mal seizures because they look simply as if I am staring into space.

EpilepsyEpilepsy has a wide spectrum. The most common descriptions of epilepsy are Petit Mal and Grand Mal seizures. These two types are dramatically different in their appearance as well as their intensity. The most commonly known category of the seizure is considered Grand Mal (tonic - clonic). During this seizure, all of the person’s muscles will be under uncontrollable tension. This violent episode often results in injury. I have had about 12 of these seizures throughout my life, but I can only recall 3 incidents, and even they are blurry to me. Lesser known to the general public is the category known as Petit Mal, which is also commonly known as “absence” seizures. I was diagnosed with Petit Mal seizures when I was in kindergarten, and lived with them ever since. Petit Mal seizures simply consist of the neurons in one’s brain convulsing instead of one’s physical body. When I have them, for example, I’ll stop talking, my eyes will flutter, and I’ll appear to just stare off into space, when really, my brain is going berserk. Afterwards, I will have no recollection of the seizure taking place. My family and I have always referred to these incidents as “blackouts”, because that is exactly what they seem to be. Nobody would guess that they were seizures, too.

Although absence seizures are mostly found in children under the ages of 14, mine not only continued through my teenage years, but they also evolved. Over time, I started to develop Grand Mal seizures, which were devastating and painful. They would only occur around stressful parts of my life or when I was lacking sleep or proper diet. Although there were obvious seizures, there were also a variety of mixes in between. Sometimes I would have Petit Mals with many myclonic jerks as well. At times I have the full blown tonic – clonic, and other times I would simply lose consciousness and have a Grand Mal without convulsing. This would be very confusing because the events resembled simple fainting incidents or narcolepsy. But the EEGs said otherwise; it’s still epilepsy.

These many types of epilepsy are constantly being perceived and categorized into different seemingly unrelated disorders such as sleeping disorders and narcolepsy. Different types of epilepsy can be triggered by balance of diet, energy levels, and sleep especially. Since sleep actually does play a huge role in the progression of epilepsy and narcolepsy, the two are often confused. Many would be surprised to learn that certain cases of fatigue in people’s day to day lives would be considered mild epilepsy. One in every 100 people is diagnosed with seizures of some type. Diagnosed. But there is much, much more to it than that.

But what are people truly afraid of? After all, epilepsy is not contagious. Then what is there to fear? I sometimes ask my friends for their honest answer to this question, and they often have a difficult time coming up with a consistent answer. This doesn’t surprise me. In situations such as this, people often have trouble pinpointing what might be so disturbing about the disorder. But perhaps the idea in itself is disturbing: the thought of failing your own self expectations at the moment of need, and somehow amplifying the intensity of the situation (the fear of not knowing what to do at the key moment, for example). It’s the unpredictable nature of a seizure that makes people uncomfortable. My own friends have described it as the feeling of “holding a ticking bomb, and not knowing when it’s going to go off.”

I will always face new road blocks along the way; I’ve accepted that, and I embrace it. For me, this not only means fresh starts with new opportunities and new classes, this also unfortunately guarantees the new level of trust and comfort I must begin to build again with my surrounding relationships when I tell them that I have epilepsy. For some I know that the media’s frightening display of “what epilepsy looks like” will influence and taint the minds of friends and colleagues. But I have had the disorder since I can remember and I’m used to this reaction. It’s the uncertainty; the unknown. I have come to the conclusion that people will always be fearful of that that they cannot control. I have gotten used to the ticking bomb in the back of my mind, but can we get rid of the fear completely? It is up to us to decide.

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