epilepsyUSA, 2010, Issue 4

Epilepsy Foundation » Newsroom » EpilepsyUSA » epilepsyUSA, 2010, Issue 4 » More Than Just Hormones: An Adolescence with Epilepsy 

More than Just Hormones

Rachel Hanretty and her boyfriend at recent functionOn reflection, it could have been something written from a sci-fi film script. But as I turned to one of my childhood friends and asked her if she could see the strange people and shapes at the front of the French classroom, it was the beginning of a hard reality for my 12-year-old self. That is the moment I recall the start of the absence seizures. It seemed ridiculous at the time and for a while I thought I was going mad. After all, in my first year of high school everyone would think I had outgrown telling tall tales. My episodes of blank confusion when I was the only one experiencing a swirl of bizarre visions and odd sensations could only be perceived as one thing: I was imagining it.

So, I didn’t tell anyone about the moments during the day when I couldn’t concentrate. I didn’t mention it to the doctor at my regular check-ups, which began after my first tonic-clonic seizure when I was 10.

Everyone hoped that when I had had my first seizure, completely out of the blue, it would be a one-time happening—a momentary blip in a normal child’s life. However, an MRI scan showed a white calcification on the right temporal lobe of my brain. I was put on Tegretol and nothing else was said apart from the occasional appointment to ensure everything was fine and the calcification wasn’t growing.

My parents were as supportive as they could be, but it was still very much a culture of non-communication. Facts remained factual and medical jargon remained in textbooks and hospital leaflets. We didn’t talk about my label of epilepsy and maintained a stoic Scottish front during doctor’s appointments so we wouldn’t—as we feared—waste the doctor’s time. Asking too many questions could be irritating. After all, to everyone else, I appeared normal.

It was exactly this—my personal knowledge of being slightly different from others—that made me grow up quickly. These séance-like episodes, which came to me throughout the day, and the twice-daily swallowing of pills, were stimuli for a fast-paced spurt towards adulthood and self-preservation. I had to look after myself and be on guard because no one else saw or could understand what was going on in my brain.

While my friends were raging with hormones and consumed with thoughts of boys and shopping, I was just wondering how I would get on with the day and what classes I would miss due to hospital appointments. Simple things like staying last minute for dinner at a friend’s house weren’t as straightforward for me. I had to take my medication after dinner. The same for sleepovers; every mom had to be briefed of what to do, “just in case.” The freedom to go swimming without an adult’s supervision disappeared because I might have a seizure and drown.

Then one day, I mentioned those incidents of confusion and the doctor sat up. “Why didn’t you mention these before?” To this day, I don’t know why I didn’t. Perhaps it was because I had been handling it all on my own and didn’t want to burden anyone.

Meanwhile, my sense of being different had grown markedly. My circle of friends moved as a pack, sniffing out those who did not follow. I couldn’t allow myself to be concerned with their trivialities, it all seemed so juvenile.

One day, it became too much and my parents decided to move me to a private school. I couldn’t cope with not fitting in and having epilepsy as well. I had subtly been excluded from the group because of my maturity, my ability to see things differently and my willingness to use my brain. In short, my epilepsy added years onto my 13 existing ones and I was the supervisor, not able to be one of the playground participants. After all, I always had to be sensible and supervise myself and my epilepsy. In addition, the private school had a dedicated school nurse, in case something happened and teachers were notified of this new, “special” pupil.

Rachel's main worry about brain surgery was an aesthetic one - what about the scar it would leave behind.  In the end, it was all worth it.The stress of changing schools brought on another tonic-clonic seizure and I found myself in hospital surroundings once again. With the medication not working, and more seizure attacks appearing, the word surgery came up. Surprisingly, this didn’t even faze me.

It felt like someone was offering me a huge opportunity of freedom and even pain and fear couldn’t quell my excitement. The 6-hour operation removed a part of my right temporal lobe and part of my hippocampus. My first reaction to this announcement was simply an aesthetic one: What about the potential scar and my hairline? To a 14-year-old, they were very important details.

I didn’t cry at all until the moment when the wheels on the hospital bed started to turn towards the operating room. The smallest amount of hair was shaven and thirtynine staples held the scar together. My face was swollen for a few days, but the dried blood eventually stopped clinging to my skull and I looked completely normal when I was discharged just over a week later.

It felt like it wouldn’t happen—until it did—and afterwards it was like a horrible waiting game to see if any more seizures would appear. They didn’t, and 3 months later I was weaned off of my medication. The moment I wrote on a school consent form for a field trip that I had no medical illnesses to report was amazing. Right then, I said goodbye to the shackles and to being different.

I had temporarily broken up with a boyfriend because I couldn’t cope with my emotions while facing the prospect of surgery. Afterwards, I gave him a kiss and held his hand without worrying that he might witness a seizure. For a while, it had been a strange three-way relationship when we took epilepsy on dates to the cinema, but afterwards it was young and innocent as it always should have been. I no longer needed to implicate someone I cared for in my own private illness.

While waiting in the wings for a student theater production, I no longer panicked that I would freeze on stage because of a seizure. Years later, I passed my driving test on my first try and moved away from home to a university. Now I live in Paris and the list of things I can do now, which might not have been possible with epilepsy, continues to grow.

It’s hard to admit and explain that without my epilepsy, I felt momentarily lost and without part of my personality. For so long I had been “the girl with epilepsy” and now it was gone. Of course, not for a second did I ever want it back, but it was like winning the lottery and having millions of dollars only to step back and think: How did that happen? Did I deserve to win it? That’s why I started writing my novel. Creating a character with epilepsy, who took measures to be free of epilepsy, helped me retrace the heavy steps I had taken. It helped me come to terms with the miracle that happened and helped me to put it to bed. One day’s surgery had physically ridden me of epilepsy, but I had to mentally and emotionally part with it.

I am searching for a publisher so that the book can help raise awareness and funds for epilepsy support. Support, not just before a major event like surgery but, as I found out, support for the often overlooked and difficult afterwards when you find that you are something they call “normal.”