An Experience with Epilepsy
To preface this, this is not a trauma or an experience that I am on the other side of. I am in a process of healing. Although I also have come a long way, I also have a long way to go.
My first known seizure was at age 14. I was on a plane to England. On that trip I had a few seizures, and started having more and more. I was diagnosed with epilepsy at age 15. I am 21 now.
The type of seizures I have are tonic clonic. Full body seizures where, simply put, too many neurons are firing in waves over and over all together into the receptors. My brain can’t handle it. Every muscle tenses, relaxes, and tenses again. Over and over.
There are many kinds of epilepsy and many causes. It is generalized to infer strobe light triggers, those who have had head injuries, and other stereotypes. But it is much broader than that. The causes and kinds are not all fully understood or controllable.
I was started on Keppra (Levetiracetam) right away at age 15. I didn’t get it. I didn’t accept it in myself. I had told one friend at school that I had seizures, and she told other people. There was one girl and her friends who got wind of it and didn’t believe me. They worked through their own insecurities by tormenting me. They were merciless. They demanded paperwork, wanted proof that I had epilepsy. When I did not produce it they told everyone I lied about it to get attention. I was mortified — and too ashamed to press my mom to help me get the papers to prove it. I stopped speaking out about it. I was embarrassed and kept it as my dirty little secret. I didn’t tell my friends. I wouldn’t go to support groups. I wouldn’t talk to any therapist about it. I resented my parents for opening the conversation. I pretended like I did not have it. I hated that it was a part of me. Resentment for my condition filled me.
Fresh air was fresher, jokes were funnier, sex was better, tragedy was sadder — and my despair was more desperate.
Accompanying this denial and self-hate was puberty, and a medication that affected my mood, temper, and thoughts drastically. I spun into negativity. I became a vegetarian and my diet was awful. I starved myself, I binge ate, I pushed myself as an athlete on three different teams. I alienated friends, mentors, teachers and family.
I did this until my mother forced me to change medication to Lamotrigine (Lamictal). A drastic improvement to my mental health ensued. My mood became more positive. My diet improved, I repaired relationships with friends and developed new friends. The people who used to bully me either matured or moved on to others. (My main bully even apologized to me at a new years party when we were 17.)
Despite drastic improvements I was still ashamed of my condition. I still resented it and could not talk about it without angry outbursts. With my mother’s support I took my medication faithfully. I accepted how I perceived the world as normal.
I took tests, scans, and more tests. My doctors could not find a root cause of my epilepsy, as all the tests came back within normal ranges. I denied it, but also dealt with it. I met success and friends and happiness along with defeat and stress and challenges. I did not have seizures. They were controlled by medication.
In my third year of university, I got cocky. I forgot the reality of my condition, as I hadn’t had a seizure in years. I took my medication more and more irregularly; never completely stopping, but there were days when I did not take any at all.
In this time period I was taking five classes and they all had labs. It was the end of semester and there were two midterms and a paper due in one day. I’d had an hour of sleep and four hours the night before. I was very stressed. My eating was mostly cereal and the occasional piece of fruit. I ended up having a seizure after I dozed of in my evening seminar after that long day full of tests. The class was stopped, I was taken to the hospital. The doctors there chastised me for going off my meds. It was a long seizure so it took days to recover. I was scared back into taking meds regularly.
The following semester I took time off university for a multitude of reasons. My lifestyle became too stressful; my self care was suffering. I became disillusioned with academia, I needed a break. I wanted to explore. I went traveling.
I was in Spain working on a goat farm as a volunteer when I stopped my meds again. The atmosphere was happy, healthy, routine, and wholesome. My whole perception of what was normal in myself shifted. I had more energy and more clarity of thought. I wrote more poetry, I loved harder, I cried harder, I felt things deeper than I had with medication. Fresh air was fresher, jokes were funnier, sex was better, tragedy was sadder — and my despair was more desperate. My lifestyle was so healthy and without stress at the goat farm that, to my knowledge, I did not have seizures. (It is possible I had short ones in my sleep.) I thought to myself, timidly, ‘Maybe I don’t have it. Maybe I outgrew it.’
I am trying to see it for what it is within me, not a dirty or embarrassing thing but simply a reality . . .
That hope was quickly dispelled as I continued my travels and returned to university. The lifestyle of high stress, the fast pace, irregular sleep and irregular diet fed my condition. I started having seizures again, regularly — in public, with friends, with partners.
I became depressed. But how could I go back on meds? I was stuck. I am stuck.
How can I suppress this part of me when the medication dampens my energy, my creativity, my clarity, and the degree to which I feel? I chose for a time to stay off meds — still hating the part of me that was not normal. That needs more sleep, that can’t get too stressed, that cannot be carefree when partying, that cannot pull an all-nighter to finish a paper, that makes me question my future as a mother, the affect of the meds versus potential seizures that brought me so much shame, that injured me in the past, that could kill me. Still resenting it. Hating and rejecting that undeniable part of myself.
As of this January I resolved to go on medication again. My resolve is easily wavered. I often don’t take meds for weeks. My neurologist is great, understanding, helpful. But sometimes I go against his prescriptions anyway. I am not sure what course of action is best for me. I have dipped my feet in naturopathic approaches and prevention strategies with equally noncommittal resolve. I am figuring out how I want to proceed, discerning what will work for me at the different stages of my life. For me, seizures indicate when I am too stressed, when I push myself too hard physically or mentally in school, and when I am unhappy. In contrast, like my experience in Spain, seizures are far and few between when I am happy and healthy and eating and sleeping well and routinely. I am trying to see it for what it is within me, not a dirty or embarrassing thing but simply a reality — part of myself that I need to deal with. I don’t pity myself and I don’t look for pity. Some days, I don’t resent it anymore. Some days I still do.
I have not come to terms with my epilepsy, and I have never been good at talking about it. However, I have started an inner dialogue. I am finding that I am more open about it than I ever have been before. This has prompted me to make a resolution to be more open about my condition. Writing this is a part of my process, one that I could not have done as recently as four months ago.
If you are going through anything similar, with any condition, whether it is head lice or an eating disorder, an addiction or epilepsy or the common cold, the best advice I have is to forgive your vessel for not being society’s ‘perfect’. Realize perfection is a fallacy, even in health. Health includes the brain, the body, the heart — and your soul and your skin. Resentment for a part of yourself is not healthy and is not helpful.
We have nothing to be ashamed of, which is easier to say than it is to manifest. We are all human and beautiful in all our imperfections and differences.
Thank you for reading this.
First published in JWC on July 23, 2015.
AUDREY LANE COCKETT is diving head first into the world of spoken word. She won the Vic Slam Indies and represented Victoria, B.C. in the recent Canadian Individual Poetry Slam. She is a poet, student, and forest dweller whose works reflect her passion for sustainability, mental health awareness, solidarity, sunshine, and wordplay.
BLAIR DRAWSON worked for many years as an editorial illustrator for some of North America’s finest magazines. Currently his interests revolve around painting and writing and illustrating his own books. He lives in Toronto and teaches graphic narrative at the Ontario College of Art and Design and Sheridan College.
Photograph by Whitney Smith.