I never imagined I’d one day be confined in a sterile room surrounded by glass windows, wires stuck to my scalp and body with a gritty paste, told to sleep as a panel of white lab-coats watched me.
I also never imagined I’d collapse in the middle of the high school hallway with no recollection of what happened, and only later be told I had a seizure.
In Grade 10, I was your typical overachiever
Three weeks prior, I had received a letter of recognition for my volunteer efforts within Alberta. I earned several scholarships for achieving the highest grade in my school for several classes, and placed first for females in our school’s “Ten Kilometer Triathlon.” I also had become increasingly active with over five school clubs.
Despite fast-tracking several classes and working as a competitive swim coach, I still had time to date the captain of our football team and attend the odd social outing.
At 15 years old, I had everything going for me, or so I thought
It all started with the smell of cherries. Then, flashes of deja-vu.
I’d think I had heard a fragment of music which wasn’t actually there. Suddenly, I’d be wearing eyeliner, which I didn’t remember putting on.
I started believing I was crazy when I started hearing voices that consumed everything I was doing at the moment. The ground would start to rise, my heart would drop and I’d be consumed by impending doom as haunting voices would engulf the atmosphere.
Seconds later, I’d be sitting on the ground, hyperventilating in a cold sweat, hands quivering and unable to recall what I had just heard or done.
It makes sense now that this began in my teenage years, as it is for most people with Temporal Lobe Epilepsy, which generally develops between 10 and 20 years of age.
The temporal lobe is located behind the temple and is responsible for regulating sensory input. Interestingly enough, of all the regions of the brain that epilepsy originates from, 60 per cent of the time it starts in this lobe.
Epilepsy is a blanket-term for a seizure disorder.
Despite the fact that one in 20 people will have an isolated seizure at some point in their life, only one to two per cent of the general population is diagnosed as actually having epilepsy, and seizure types can vary drastically.
“Epilepsy is still an incredibly stigmatized condition, and people tend to be very fearful of it because they can’t see it,” says Gina Beasley, support coordinator at the Epilepsy Association of Calgary. “The fear of a seizure happening, what to expect and how to help can be really frightening to the people who don’t have epilepsy.”
A seizure is classified as a disturbance of the electrical activity between neurons in the brain, which can cause a change in awareness, behaviour and movements.
This can be attributed to brain injury, tumours, genetics and many other reasons, however, 60 per cent of diagnosed individuals have no conclusive reason as to the onset.
I fit into that category.
I had heard of epilepsy mainly through movies, which often depicted an incoherent person uncontrollably convulsing on the ground. It came as a surprise to me, though, because although I had dropped to the ground in fear of what I was experiencing, I had never collapsed because of uncontrollably flailing limbs.
This media-conveyed convulsing is depicting a generalized seizure, also known as tonic-clonic seizure when electrical charges instantaneously involve the entire brain.
I, however, was having focal seizures, which means the abnormal electrical activity is limited to specific hemispheres of my brain.
An “aura” is when a person is conscious and aware, but experiencing emotion, tastes, or sensations which may not be true to the moment. These sensations are actually a focal seizure with retained awareness, which later can progress to a focal seizure with a loss of awareness.
For me, the aura was the smell of cherries, the feeling of fear and the fragments of music.
When the awareness is lost, this can lead to what is called a focal dyscognitive seizure. Automated behaviour may happen such as mumbling, picking at something or walking around aimlessly and the person will appear unaware of their environment or dazed.
I’d often be told by friends I’d repeat a phrase such as, “I need to sit down,” or “I need to call my dad,” although I have no recollection of saying such things.
After my diagnosis, what was scariest to me wasn’t that I couldn’t remember what happened, that I’d possibly need brain surgery or that I had no idea when the next seizure would strike, but that I felt alone through it all.
Even though, statistically, 25 other students at my high school of 1,263 people should have had epilepsy, I didn’t even know of one.
Jamie Bannerman was also diagnosed when she was a teen and didn’t personally know anyone with epilepsy
“It was terrifying,” Bannerman says. “It was a lot of pressure. And, my lifestyle had to change a lot.”
Being diagnosed in the middle of high school also added the challenge of dealing with bullying, and people would often treat Bannerman differently once they found out about her condition.
“People should know more about it, I guess. I wish people were more knowledgeable about it,” she says.
I, too, had experienced taunting from other students
I found it was often from people who didn’t understand what epilepsy really was.
Beasley, with the Epilepsy Association of Calgary, says, “It’s a two-part approach. It’s certainly dealing with the individuals and families directly affected, but it’s also trying to deal with the larger community.”
She adds that in order to de-stigmatize the disorder, education is crucial. “Epilepsy is still very feared and very misunderstood,” Beasley explains.
After growing up, I realize that so many people with epilepsy silently went through what I went through, even if I couldn’t actually see their struggle.
I never imagined the strength and empowerment I’d build from living with epilepsy. Although I felt like I went through it alone, many went through the same thing and didn’t realize the number of others unable or unwilling to speak up.
Now, I have a greater admiration for the strength in all of these silent survivors.
Editor: Alexandra Nicholson | firstname.lastname@example.org