Debunking the Fallen Illness*
*Excerpt from The Link's Disability Issue. McGuire, Antonia. "Debunking the fallen illness" (Oct.18, 2005)
http://thelink.concordia.ca/article.pl?sid=05/10/17/234208.
By Antonia McGuire, winner of the 2006 Epilepsy Scholarship Awards
Saliva-foaming at the mouth. Violently shaking limbs. It's almost like she's possessed. Better get a spoon, quick—put it in her mouth. Charles Baudelaire once said, "the world only goes round by misunderstanding." Well, that is certainly the case for epilepsy; there has been a seizure in the truth surrounding this condition.
Considering we live in an information-obsessed society, it is ironic and sad that even today, many hold similar myths about epilepsy. For instance, it is commonly thought that persons with epilepsy are somehow intellectually or physically unable to work. Yet, some of the brightest minds and extraordinary public figures in history had epilepsy, including: Socrates, Alfred Nobel, Joan of Arc, Vincent Van Gogh and Ludwig van Beethoven.
Every day in Canada, a surprising 42 people learn they have epilepsy (1). In fact, the number of people with epilepsy in Canada is more than double the numbers of people with cerebral palsy (55,000), muscular dystrophy (28,000), multiple sclerosis (39,000), and cystic fibrosis (3,400). Still, many people would rather not make their epilepsy public knowledge because they want to avoid a negative social response or discrimination at work.
There was a time when I remember feeling extremely self-conscious about my condition. In elementary school, I used to run away during recess when felt a seizure coming because I didn't want my friends to see. In my teens, I was keenly aware of the social drawbacks of taking medication: no alcohol (or only limited intake) and no experimental drug use at parties. For women, there are other personal issues to consider. For instance, some medications used to treat epilepsy can lessen the effects of birth control pills.
In my mind, epilepsy only equates to a disability if you let it cripple your thoughts and dreams. If anything, it's a character builder. I tend to look for the positive in a negative situation; epilepsy has helped me to master self-discipline, gain self-respect, and discover how to find balance and care for my body. However, learning to cope with the disease can be socially isolating, especially during adolescence. It's a tough lesson, but you have to be your own cheerleader. What's harder is revealing your dark secret.
There came a point in my life when I decided to show the skeletons in my closet, and to my surprise, my friends and boyfriend didn't look at me funny. Rather they were curious to know what it was like to have a seizure. Often times an aura, similar to a tingling sensation, signals that a seizure may occur. Most people would recognize a grand mal seizure; it often causes a loss of consciousness and convulsions. Triggers that cause seizures include: stress, lack of sleep, missed medication, poor nutrition, fever, hormones, and emotions such as anger or worry. In rare cases, some people who experience reflex seizures react to flickering lights or complex stimuli, such as a telephone ringing.
About two-thirds of people with epilepsy, including myself, have only petit mal seizures, which usually go unnoticed and are well controlled so long as I have eight hours of sleep per night, reduced stress levels, and limited alcohol intake. However, having a regulated lifestyle is easier said than done. There will always be a hectic week at school or an unexpected turn of events in the workplace, and suddenly daily routine goes out the window. Such stressful periods are only temporary though. I may have a chronic medical condition, but it still doesn't control how I live my life. With proper treatment, education, and emotional support, it's relatively a walk in the park compared to what some others have to deal with.
Did you know that among the 40 million people with epilepsy around the world, 32 million have no access to treatment due to lack of service or the irrational belief that it's not a treatable medical condition (2)? Sure, there is no cure, but it's been light-years since this stone-aged myth started and yet there are still some who believe people with epilepsy are possessed by the devil. It's like calling someone "retarded" or calling a person with leprosy a leper. These stigmas are often fed by simple fear of the unknown. To those who feel constricted by society's distorted perception about epilepsy, I say, get real. Epilepsy has actually enriched my life - once I seized it as an opportunity to grow as a person.
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It would take a lot of soul-searching and writing before coming to this point in my life. But things became crystal clear for me while studying at Royal Holloway College University of London three years ago. During my third year abroad I had begun writing feature stories for the campus newspaper, The London Student. By the end of my travel adventures and psychology studies, I had discovered my life's purpose and my ability to connect with others. I felt the burning desire to tell stories as a journalist. Since then I've had several articles published in The Ottawa Citizen, The Ottawa Sun and The Montreal Gazette, to name a few. Having worked briefly as a reporter - photographer for a community newspaper group in Ottawa, I left to pursue my graduate studies in journalism at Concordia last summer.
Essentially my article, "Debunking the fallen illness," was the first time I had written about my personal experience for a social cause. I felt compelled to set the record straight about epilepsy by sharing my personal story. The epilepsy I have is actually a manifestation of a congenial genetic disease called tuberous sclerosis. When I learned that about 50% of persons with tuberous sclerosis are mentally handicapped, I felt blessed as one of the "luckier" ones, having only a mild case of epilepsy and minor birthmarks. This article is so much more than personal triumph; it's about standing up for the truth and acting as inspiration for those who may still be questioning their place in this world.
As Simone de Beauvoir once said: "Defending the truth is not something one does out of a sense of duty or to allay guilt complexes, but is a reward in itself." My writing experiences at Concordia have allowed me to grow as a person and become a stronger writer. In turn, I embrace the possibility of working at a major newspaper this spring as an opportunity to reach out and continue educating the public about epilepsy. There is so much more to learn about epilepsy, and more importantly, there is hope for those who have it.
Sources
1. Epilepsy Canada Fact Sheet.
Http://www.epilepsy.ca/eng/content/sheet.html
2. Epilepsy Canada.
Http://www.epilepsy.ca/eng/mainSet.html
