Charles’ Story

By: Charles (Karolis) Petryla

Man becomes a writer because of epilepsy

Charles (Karolis) Petryla, 30, writer, lawyer, Lithuanian people with epilepsy association Epile president, is one of the examples that epilepsy is not a constraint in achieving success; according to Charles it can even help sometimes. “Epilepsy takes a lot from you, but on the other hand it gives something to you. People with epilepsy should find what epilepsy gave to them; for example, maybe talent, maybe a new view on life, or maybe epilepsy was the thing that helped change a job that you hated, change your life.”

Epilepsy started with a pleasant déjà vu feeling

Charles’ epilepsy developed when he was 6 years old. A young kid pushed him to the nail in the door, and Charles hit the nail with his head. The interesting thing is that although he had thousands of seizures, he wasn’t diagnosed with epilepsy until he was 20 years old. This shows how little is known about epilepsy, even amongst doctors. Charles had absence seizures; during a seizure (that would last up to 10 seconds), he would freeze, open his mouth, and stare at one place. Before a seizure, he would feel a pleasant déjà vu feeling, that he was already in this situation, that he was at the same place (although it was a place he went for the first time), and after 5-7 seconds (aura phase), he would lose his consciousness for up to 10 seconds, waking up from a seizure not remembering what happened and continuing doing stuff. Everybody saw his seizures (sometimes he had up to 8 absence seizures a day), including parents and classmates, but nobody could tell what was going on with Charles—he would be talking one moment, and the next, he started repeating one word. When Charles was brought to medics (family doctor, even neurologists), they said that he has blood circulatory problems in his brain and he should take drugs that expand veins. Of course, it didn’t help.

Because he didn’t know that he had epilepsy and others around didn’t know this fact, Charles wasn’t bullied, but he is sure that he would have been bullied if others knew about his disease. “It’s all about the stigma surrounded around epilepsy. I am 100% sure that I would have been bullied in school because of my epilepsy. I remember I was in 8th grade and during biology lesson I heard for the first time about epilepsy. The teacher said that epilepsy is a disease that consists of three necessary elements: falling down, shaking, and foams (or even vomiting). Like without these conditions, epilepsy could not exist. I remember I walked out of the class thinking epilepsy is a disgusting disease, and I would never want to be near an epileptic, although I myself had this disease. One classmate looked at this shy boy and said, ‘Look, there is foamy.’ I thought to myself, I would not want to stand next to this epileptic; if he falls down, what should I do? This all shows what harm can be done by people talking about epilepsy who don’t even know that there are many types of seizures, including doctors.”

A turning point in life

Charles led a normal, happy life, he would drive a car, he would drink alcohol, and he liked to party during his studies. He didn’t know he had epilepsy, and then everything changed one day. Charles went to a big sports event on Saturday evening—there were many lights, stress, and alcohol—all factors that provoke seizures. After the sports event, he went to his girlfriend’s place, and there he experienced his first ever generalized tonic-clonic seizure. He was in an epileptic state, vomiting, not gaining consciousness for two hours. Medics arrived and saved his life. This was a big signal.

After this evening, Charles did go to the best Lithuanian epileptologist professor, doctor Ruta Mameniskiene, and she told him that same day that he had epilepsy. It is not quite clear why it happened this way, but Charles’ epilepsy could change its form. Lots of time absence seizures, when not treated for years, change to heavier form. Another factor is that Charles had added head trauma; two weeks prior, he was beaten by three men in the street. Epilepsy changed everything—no more alcohol, a lost driver’s license, and taking medication every day. Charles’ epilepsy changed from absence seizures to a diagnosis of “partial epilepsy with secondary generalized seizures,” meaning that his seizures start at one place at the brain and spreads through the whole brain. Charles states that almost every year his seizures change, sometimes they are tonic, sometimes just partial with lost consciousness (sleep walking). Charles reacted to diagnosis calmly because he expected something worse, like cancer.

Epilepsy brought creativity

After worsening condition, epilepsy diagnosis, and treatment with 2 different drugs, Charles noticed something strange—he started to write every day. Before he could not even write an essay in school, and now he could write on any topic just by sitting down and writing 10 pages at once. Not knowing what present to give his grandmother for her 90th birthday, he wrote a biography book about her life and gave it to her. It was a shock for others. Hundreds of ideas started to fly to Charles’ head, and he started to write his first book. Now Charles is a known writer in Lithuania and has already written already 4 books. At this time, he is writing the first book in Lithuania about epilepsy to help others. His first fiction novel for teenagers included epilepsy so teenagers would understand that epilepsy is not about falling down, and that lots of famous people also have epilepsy. “If not for epilepsy, I would have never written a book. When my first books were published it was a shock to my friends. How could this man who couldn’t write, who would get C- at best at school, and who loved to party and drink alcohol write fiction, romantic books? I am grateful for that to my epilepsy.”

Charles Petryla understood that it is not so hard to live with epilepsy as it is hard to live with society that is afraid of people with epilepsy, so he decided to talk about epilepsy to others, in television and newspapers, in order to break the stigma and maybe even prevent suicides. “Lithuania is a small country, and it is like everybody knows everybody, so people with epilepsy are really afraid of talking about their disease, because they can lose a job or even friends (of course I wouldn’t call them friends).” Charles is now an example in Lithuania that you can lead a successful life even with epilepsy, and his honesty helped lots of people understand more about epilepsy. “People with epilepsy should talk louder about the disease in this way everything could change. I would hide my disease from my friends and when I went public they were amazed. ‘You have epilepsy?’ they would ask me. And now they think differently about people with epilepsy. Before they thought that epilepsy is just falling down, now when they hear the word epilepsy they think about me. ‘Oh, I know this person Charles who has epilepsy. Great guy. That means all people with epilepsy are great and it is nothing to be afraid of.’”

The dark side and hope

Although Charles has a well-paid job as a lawyer in manufacturing company, he is a known writer publishing books every year life is not so sweet because of epilepsy. As he says epilepsy, gives something but it also takes something from you. “In my case, epilepsy is not a big problem, the biggest problems are drugs that I take every day. Now I have a really bad memory which is does not help in my job as a lawyer. I forget all the good moments in my life just because of medicine. Also, I have low energy, only a third of my energy potential. If I stopped taking my medicine I would have energy again and my memory would recover, but on the other hand, God knows what would happen with seizures.”

Charles always sees light in a dark room. Medicine helped Charles to control his seizures—from five seizures a day, now he has had only one seizure in three months and at night. But he has to pay a big price because he feels always tired and has symptoms of depression. Just 4 years ago, because of one epilepsy drug’s side effect, he was diagnosed with bipolar disorder (maniac depression) but changing medicine helped to get rid of this condition. His memory is worsening and he doesn’t remember people. But he found a way not to give up.

“The most important thing is to look forward, set high standards, high goals. I really had difficult times, even thinking about suicide, but writing and new tactics helped me. Now I simply understand that when bad thoughts come to my head it is not me, it is the drug’s side effect, and I simply look forward in achieving things no matter how hard it is. I say, you have two alternatives—either you cry and stay in one place (which is impossible, because you fall back while life is going forward), or you cry but also move with a little step. It’s harder for me to move on now, because I lost lots of energy, but I still write, and I even go to kickboxing training. I would tell people with epilepsy that epilepsy is not an excuse to do nothing; there are singers, writers, athletes, and politicians who have epilepsy, and it even helped them. No matter how hard it is, you have to move on. Epilepsy is that disease that always leaves you hope that it will be possible to heal. Also remember to be an example, in that way you will help thousands of people.”