You Are Not Alone
By Sara Ellen Kelly
I was in grade 10 English class. We were reading Macbeth. Mr. Jardine had assigned us into small groups to discuss the characters and similes behind the writings of Shakespeare. Words were flying over my head like a flock of swarming seagulls; a floating sensation, vastly arising upwards from my feet to my head. It felt peculiar. "Sara? Are you listening?" Lisa questioned. My ability to understand the validity and meaning in words were gone. Her words had no meaning, no definition. They began to sound like mumbled noises or a screeching violinist. Her voice gargled, so slow. "Saraaaaa aaaare yooooou liiiiistening???" I had a seizure.
The next 5 minutes irreversibly changed my life, as I knew it. And I can't even remember them. I was pulled out of my classroom, down the hallways of my high school on a stretcher, hundreds of students watching like eager paparazzi. I buried my head under the blanket, hiding my face and tears.
I was diagnosed with primary generalized epilepsy. Would I be able to drive? Would my friends still like me? Could I have children? Could I choke on my own tongue?
3 years later
I was still asking myself the same self-deprecating questions as I was when I was fifteen. I had graduated from high school and was working at the mall. I was in my friend Julia's car and we were on our way to work. I was in the passenger seat. We were smiling, laughing. The sky was grey; it was raining. The fog was billowing, weaving itself in and out of the raindrops. Pellets of rain hit the windshield, the sound echoing in my head like the smash of cymbals in my ear. Unpleasant- I tried not to listen. I had a seizure, again.
I lay on my stairs, a scared girl peering at me with tears in her eyes and flushed cheeks. Her hand rested on my arm. It felt comforting but I didn't even know who she was. I now know it was Julia, I couldn't even recognize her. She looked at me as though somebody had just died. That somebody was me, but I wasn't dead. I just felt like I was sometimes.
I returned to work two days later, embarrassed and ashamed. I felt as though I had just been hit by a big yellow school bus, filled with children sticking their heads out the windows pointing and snickering at me. I am different, I say to myself. My legs feel bruised, too heavy to lift and I have a protruding bump on the side of my head.
The seconds tick by on my wrist watch, only 6 more hours left and I am finished work- tick, tock, tick, tock. Three women gather around a change room. They whisper… "She is lying; she didn't have a seizure!" "What is a seizure anyhow?" "Who even knows if she has epilepsy?" "It is when someone is shaking around on the ground and choking on their own tongue." "Ew, that's so gross!"
I felt like an outcast; like the last child to be picked in gym class; like the little girl who quietly sits in the cafeteria alone, eating her peanut butter and jelly sandwich and staring at her own feet. I felt like I had a disease. I quit the next day. I couldn't bear to look at my co-workers in the face, when I knew what they thought of me.
I was unemployed and had epilepsy, who would hire me?
I sat in my room for a week, conjuring up every possible excuse why I shouldn't leave the safety, which my bedroom provided. The walls couldn't speak. I trusted no one, I felt alone.
My dad has seizures. I remember the first time that I saw a seizure. My father's arms, violently contracting in and out of his body, blood foaming out of his mouth; his eyes were rolling back into his head. My daddy- he didn't even recognize who I was. I was only nine years old. I couldn't look at him in the eye for weeks, in fear that as he looked into my eyes they would fall deep into the back of his head and he would seize. I couldn't bear to see him in so much pain. I had nightmares consistently for 4 years. Each nightmare the same, nothing changed. He would choke on his tongue and die, and I would be watching unable to speak, move, or do anything to take away his agony. I felt hopeless. The ignorance that haunted me in my sleep as a child now haunted me while I was awake- every single day.
For 16 years, I have watched my father have seizures. No one ever sat me down as a child and explained to me exactly what a seizure was. No one wanted to talk about it. I was 10 years old. What was a neurotransmitter? No one ever told me that I wouldn't choke on my own tongue. I just assumed that every night as I slept that I would.
People do not like to discuss issues that are considered to have stigma attached to them. Historically, in ancient text people who 'seized' were considered to be possessed by evil spirits and shunned from society. Social norms predict what should and shouldn't be considered 'normal' in our society, and what is considered 'different'. An individual, not a stereotype, should predict social norms. No one wants to be different. No one chooses to be different. Ignorance is defined as a lack of knowledge or education. That is why it is important to promote awareness in the community about epilepsy, and anything that is labelled as 'different'.
I had never spoken to someone about my epilepsy before speaking to Sandy. I ignored it. I felt ashamed in admitting to people that I have epilepsy. I stated the facts, "I am epileptic"; when people asked me why I did not drive, drink alcohol, stay up late, or drink coffee- the miniscule and materialistic details in one's life that seem of such importance. However, when you have never experienced them they seem all that much less insignificant.
I walked down the hall dragging my feet. I opened the door and walked across the threshold. I felt like a new bride. A new sense of security, safety, and belonging engulfed me. Hummingbirds circled harmoniously around my head. I inhaled my surroundings, breathing in; I exhaled a sigh of relief, breathing out. For the first since I was diagnosed with epilepsy, no one would snicker. No one would force a spoon into my mouth.
Sandy Buxton was my employment counsellor at Epilepsy Toronto. Her smile was warm and genuine. She taught me many things, most importantly, she taught me about ignorance. Why ignorance exists, why we must try to be understanding of ignorance- yet not accept it. I explained to Sandy what my manager had said about me. My fear of working, of what others thought of me, and would say about me behind doors open and closed. "Why don't you write them a letter?" "What will it do?" "It will make them realize how it has affected you, Sara." "Hmmm…" I pondered. "You are right Sandy."
I must have re-written that letter a hundred times, as well as making three trips to the mailbox, leaving with the letter in my hand. On the third trip, I let go of the letter. I smiled, as I released the letter from my fingertips.
I got a written letter of apology from the C.E.O. one month later. They offered me my position back with a raise in pay. I declined the offer.
I began volunteering at Epilepsy Toronto. I enjoyed being there. I felt a sense of security and fulfillment. I was volunteering in an atmosphere that provided me with a sense of purpose. I was hired as their H.R.D.C. summer student. I was assisting with their first major annual fundraising event 'Buskerfest'. I immersed myself in the position. I assisted in the volunteer coordination and event promotion. From putting up Buskerfest promotional posters, contacting potential sponsors, to recruiting volunteers.
It wasn't until I 'co-facilitated' an epilepsy support group with Epilepsy Toronto social-worker, Nick Mule, that I realized I wanted to be a counsellor. I applied for the Human Services Counselor Program for the following September. I was accepted into the program and enrolled for the fall of 2000. I have continued to volunteer in the community at the Brain Injury Association of Toronto, the Centre for Addiction and Mental Health, Regeneration House, Friends & Advocates and this past summer as the Special Events & Fundraising Coordinator at Epilepsy Simcoe County, where I assisted in organizing their major annual fundraising campaign 'Glad Days'.
I am currently enrolled in the program part-time, where I am majoring in mental health and doing a minor in criminal justice. I feel that more importantly than my qualifications or educational requirements, I am passionate about assessing each person's experience and emotions as 'individual'.
I know what it is like to feel alone, we all feel alone. I still do sometimes. However, I have taken the negative experiences that I have had and turned them into something positive. They helped me realize the importance of promoting epilepsy awareness and providing support and an ear to those who feel as though they are the only person in this world who feels the way they do.
You are not alone.
