Jolana Batková (20) comes from Zlín and studies pre-school and after-school pedagogy at the Higher Vocational School in Olomouc. At the age of seventeen she underwent surgical resection of an epileptogenic lesion.
When did you first develop epileptic problems?
Right after I was born. I experienced nystagmus – every morning and several times during the day, my eyes would flutter. It was getting better, but it lasted until the surgery.
My first epileptic seizure came when I was thirteen. We were on vacation in Italy with my family. It happened at night and my sister, a year and a half younger, saw me. She thought I was joking, that I was trying to scare her – and in the morning, no one believed me.
The second seizure came later in September. I was afraid of a thunderstorm and slept in my sister's room. The ambulance took me to the hospital. My thirteen-year-old self was in shock; I had no idea what this illness was.
It took me a long time to come to terms with it: I was in my teens, I wanted to enjoy life and be attractive to boys. And then some disease came along that all I knew about was that I had to follow certain rules. It was very hard.
What were the limitations?
I was on medication and I had to follow a sleep schedule. For example, at summer camp, I couldn't participate in the evening programme or the night fighting games. I couldn't try to drink alcohol.
But I was responsible. After I accepted the disease, I tried to keep everything in line.
How did your family feel about it?
Of course, they wanted to protect me. Especially my mother was very unhappy. My younger sister used to babysit me at summer camp. But I had a mind of my own, and many times I disobeyed – at the age of fourteen or fifteen, I was tired of being told over and over again to follow my regime. But even that was accepted just fine, mostly (smile). I was still the same, just with limitations.
What about your friends and your surroundings?
I was reluctant to talk about my illness; I didn't even confide in my friends in class. I took it as my secret and rarely found the courage to trust anyone.
How did they react when you did?
They accepted it and asked how we found out about my illness and why it happened to me. Which is not known exactly, and I didn't fully understand the explanation of what had happened in my head after the birth. All I knew was that I had to undergo surgery.
Did you experience any dangerous situations when you had the seizure?
No, I used to have seizures in my sleep or when I woke up. Only when I passed out, I felt I might fall.
How did the disease progress?
I had several periods over the six years, fainting was one of them. Then the epileptic seizures came back, about six a year, and I temporarily lost my vision during the seizures. We tried various medications, and when they didn't work, my neurologist in Zlín sent me to Motol for nightly observation. That's how they found out that I had an epileptic finding in my head, like a small lump, and that with age, I would have more seizures.
That's when you were seventeen. What are your memories of Motol and the examination?
Yes, I was in my second year of high school.
I don't remember much. It was nighttime EEG monitoring, and I was wearing a cap with electrodes on my head, and the doctors were examining my waveforms. The first time, however, the epileptic seizure wasn't confirmed, or rather I didn't have one, but Dr Kudr and my doctor figured out where it was wrong. And then we had a meeting in Motol, my mom and dad and the doctor were there, and they told me that there was something in my head and I had to have an operation.
How did you feel?
I almost burst into tears. I had mixed feelings. I felt happy and scared; actually, I was very scared, although it was different from when I was thirteen. And I wanted to get it over with as soon as possible, so I agreed.
What happened after that?
After that, nothing happened. And three months later, my mother told me I was scheduled for surgery. The day before, I hadn't expected it at all! She didn't want me to think about it too long, so I only managed to cry on Sunday while packing, and by Monday, I was fine. I didn't even realise I was going into surgery the next morning.
How did you feel when you woke up?
It was an incredible feeling: I really made it! However, I spent another week in the hospital.
The nurses and doctors were great and kind, and that's why I felt a bit better afterwards. I was re-learning things that I had been doing automatically. I rested a lot, slept a lot. I wanted my family with me.
My scar.
I already have hair.How relieved were you to know that the surgery had solved the cause?
The nystagmus stopped, my eyes were fine, although I could still see blurry for a few days. I was recovering all summer; I only went to school to get my report, I lost the holidays. Simply washing dishes exhausted me so badly that I had to go to bed.
When did you get your strength back?
About halfway through the holidays. I had a lot of plans, but I knew I had to sacrifice them.
Were you still on medication after the surgery?
Still, for another year and a half. I got off them when I was in my fourth year of high school to give my brain time to adjust. But my parents already saw me as a healthy kid.
And you didn't have to watch yourself so much…
It was easier. I knew I was okay, and if I went to bed a little later, it wouldn't matter so much.
