Diary of an Epileptic: From 8 to 18

Living_Brain_Disorder2.jpgAnonymous: Eight years old, fearless and freckled, more interested in baseball caps and bugs than dolls and dresses, my life was very good. Recess was spent knee deep in gravel playing soccer, football or baseball with the boys. Going out for a long pass was all in a day’s work.

But this day was different. Like most ambitious kid on playgrounds, sometimes the athletic feat you have in your mind ends up in a scraped up wreck on the black top. What I didn’t realize was a couple of band-aids wasn’t going to fix what happed to me on the asphalt that day.

Weeks later I started to blank out. I was in the room but removed, distant. Something odd was happening to me as I would wander about but didn’t have any real control over myself. It was scary and embarrassing. It wasn’t long before my parents noticed my problems and rushed me to the doctor. Several needles, pokes, tests, procedures, and a lot of nervous looks later I was diagnosed with epilepsy.

I am uncertain if it was my tough tomboy persona or innocence, but after receiving the news I was fine and the week seemed OK. That was until my pediatrician strongly advised my mom not to tell anyone about the epilepsy. It was then that the gravity of the stigma of epilepsy settled upon my parents and a scared eight-year-old little girl.

Dr. Honeywell was a great doctor. He had curly red hair, a big red mustache, and he was always happy. He was funny, nice, warm stethoscope and mom said he was really good. I had never seen him so serious. He advised not tell the teachers, write it on any of her school administrative paperwork, or tell people outside the immediate family. He did not need to spell why.

My seizures became the family secret. We told no one. It was relatively easy because they were controlled by medication and if I had trouble it was always in the middle of the night. It was ALMOST like they didn’t exist.

Then disaster struck! A couple of months later I was invited to my first slumber party. Like any little girl I was thrilled and excited about the party. Then the realization of my condition hit me and suddenly I wanted to throw up. What if I all my friends saw me having a seizure?

This was the beginning of many difficult decisions between participation and exclusion. Should I sequester myself for fear of discrimination from others or should I take the risk and surround myself with a gaggle of fuzzy slippered, pajama clad, giggling girls? I went and slept with one eye open all night long.

My greatest challenges were maintaining secrecy and managing worry. I agonized over the thought of forgetting my medication or having a “problem” in public. Every day at 11:35 a.m. sharp mom parked under the flagpole outside my red brick elementary school. While all the other children were eating lunch, I snuck out to meet mom for a cup of juice and my medicine. For years we went undetected. She was there like clockwork and so was I.

In fifth grade my parents started to trust me to take my own medication and I started to carry a purse to school. Soon it became my sole responsibility to remember to bring and take my anti-seizure meds. The fear forgetting my meds was overwhelming and it was only compounded by the fact I had to find clandestine locations to take my pills. I swallowed my pills in bathroom stalls, empty rooms, or outside and often without any liquid.

Our secret became “my” secret. Eventually it got to the point where my family never saw me taking medication. They never asked how I was doing and I never brought it up.

Mostly life was normal, and I lived a normal life. The meds worked allowing me be a cheerleader, sing in choir, swim and play tennis competitively. I had friends and boys that liked me. Junior high school life was good.

But growing up with epilepsy was like running through an obstacle course. Except this obstacle course was also a maze complete with dead-ends. Months would go by without a seizure. I dared to think my meds transformed me into an ordinary pre-teen living a normal life. Then it would come, a humiliating seizure, as if to taunt me or let me not forget what lurks just below my skin.

I will always remember my sister’s expression as I came out of a nocturnal seizure. I was disoriented and I could tell it was one of my longer and rougher seizures. She must have been only 15 years old and she was scared, heart wrenched and helpless. She felt such deep sorrow for me. I hated being pitied.

My “problem” is when I had them, happened at night waking me from sound sleeps. Trying to get to sleep every night took tremendous effort. I slept in my own room and often the fear of being by myself would overcome me. My two older sister’s rooms were near by. I often snuck into their beds after they were asleep. But sometimes I found a door closed and preferred sleeping in the hall. There were no bad memories of in the hall.

On those nights that I had “trouble” often no one came. While only a wall separated our bedrooms my sisters said they didn’t hear anything. To this day I still wonder if they felt too helpless to come. I would recover quickly and take care of myself. Eventually I would go downstairs and crawl into my parent’s bed.

When I hit adolescence my seizures changed as my body changed. The seizures began to appear during the day. This of course was devastating. My family and I approached this bump with courage, faith and as over comers.

My neurologist changed my medication. Unlike my former medication this medication left me feeling uneasy and edgy. My seizures were MOSTLY controlled by medication. The uncertainly was unnerving.

Life went on and I had no other choice but to accept my fate. I had good days and bad days. Often an aura (the precursor to a seizure), or a seizure itself was easier to cope with than living with the fear of having “trouble.”

What if my friends discovered I was epileptic? Would they look, point and whisper when I walked into a room? It would change my friendships, relationships and social status. Or so I believed.

I was 17 and as life would have it I fell in love. His name was Jake and he was my best friend. I was crazy for him. We would stay up late and talk for hours (at least that’s what I told my parents). Sometimes we would fall asleep together. Like a slap to the face it dawned on me that if we kept doing this I was likely to have trouble in front of him.

It was strange. I would have been mortified if I had a seizure in front of him but I also wanted to tell him everything. I was in love and love has no secrets. I had to tell him sooner or later.

We were parked in his beat up grey civic and I knew it was now or never. I was terrified. He could tell something was up by my pasty white face and deer in the headlights eyes. Acting like a typical teenage guy he tried to brush off a serious conversation with some juicy gossip about the pom-poms.

I interrupted him, I have to tell you something. I have epilepsy. The problem is from an injury on the left side of my brain from a playground fall when I was eight. I am ok. I take medication. I wanted to tell you because I don’t have trouble that often, but when I do it at night and I wanted you to know, but I won’t have trouble. OK? Huge breath!

He stared back at me eyes wide open. Then a small, painful eternity passed, probably 3 seconds. Slowly he began telling me a story about when he was a little boy. He incurred a head injury and experienced grand mal seizures for a few years until he finally grew out of them. Now, that was unexpected!

All of a sudden my big secret didn’t seem so dark. That night I wasn’t all alone. He still loved me.

This article deals with epilepsy, a neurological disorder marked by electrical disruptions in normal brain conductance that produce body movements, false sensations, and emotions collectively termed seizures. For further information on the disorder pathology, interventions, and lines of research please visit The Epilepsy Project website at epilepsy.com. The article was collected by driveCommerce.

Ray McIntyre

Ray McIntyre is a former librarian who spent many years in social justice.
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