Tuesday, November 2, 2010

National Epilepsy Awareness Month: Get Seizure Smart

The focus of this blog is to write about my running experiences and to share those with other people- runners and nonrunners. It is to complain about my frustrations and gloat about my accomplishments- in the running realm, primarily. However, I can't always focus on my running.

August 29, 1997. My dad, my childhood hero, was pronounced dead. We don't know the exact date of his death, probably a few days before that, as he lived alone, but didn't show up to work the 28th or the 29th. He didn't come to pick my brother and me up on Friday the 29th, so my grandparents took us to see what was going on. He was already dead. I was ten years old.

The first time I heard about epilepsy was a few months before that. My dad, brother, and I were playing a video game in the living room. I remember my dad getting up and leaving without saying anything, which was unusual. When he'd go to the bathroom or go out for a smoke, he would tell us, especially if we were playing together. For some reason, I didn't follow him. I heard weird noises coming from the back of the house, noises I hadn't heard before. It scared me, but I felt like I should continue playing with my brother. I felt protective of him and didn't want him to be fearful, too. I'm not sure how much time passed before he came back, but he did. We played more games together and, eventually, went to bed.

My dad knew that I couldn't sleep. I must have been an overly sensitive child, because after my brother had been asleep for hours, my dad came in to talk to me. He explained that he was sick. He told me about the medication he had to take to help his brain work correctly. He explained seizures to me, epilepsy... I felt relieved that he was on his medication, that it helped him, and that he didn't have seizures very often. I felt like I was prepared to handle it if he was to have a seizure in front of me. In retrospect, his explanation could not have prepared me to watch him have a seizure, but I felt like I was ready. To a point, my fears were calmed.

After he died, I went back to that conversation time and time again. For years, I wondered if I had reminded him of his medication or if I had been there, maybe he would not have died. For more than ten years, I blamed myself for his death (there are hundreds of reasons for that, but I'm not going to list them here). As I got older, I knew that it was not my fault that he had the seizure, that it was horrible, or that he hit his head and had bleeding in his brain. I still blamed myself, not the epilepsy.

In the fall of 2008, I was overwhelmed constantly. I was supposed to be in my last year of college, but I had just changed my major. I had two jobs and was sometimes working 55 hours a week.. I'd be at work until 2 in the morning and then had to work again at 8 the next morning, followed by classes, then going back to work. It was a really difficult time in my life. By November, I started having strange deja vu episodes. I didn't have a name for them, but I knew they weren't normal.

Each time, my episodes were the same. I would have a moment of deja vu, followed by a hallucination like experience. These episodes occured regularly, several times a day, sometimes in class, sometimes at work, sometimes in the shower, sometimes doing homework, sometimes just sitting around. I tried to hide them, but I know that my roommates noticed.

A Monday in February 2009, I was at work chopping lettuce. I was joking with my friends about something and being teased, nothing unusual. I had the same deja vu experience that I typically had, but my vision began to get blurry. I remember that I was with it enough for a moment to think about my vision getting blurry. The next thing I remember is waking up. I was laying on the floor and a group of people were standing around me in a circle. Someone said something about a seizure, someone else said I probably hadn't eaten breakfast.. everybody had a theory about why I "passed out." Naturally, I got defensive and argued with my coworkers AND supervisors about it. Ha.

After going to the campus health center and the emergency room, I was diagnosed with..... syncope. So, I passed out. Epilepsy, however, stuck in my mind. I had an EEG, a CAT scan, wore a heart monitor for a few days, among other tests. I was in my hometown every weekend seeing doctors. All of my tests came back normal.

However, I read a LOT about epilepsy after that. I felt like it fit, even though all of my tests were normal. I was the only one who was experiencing what I was experiencing. I was the only one who knew every detail and every single thing that I felt.

At the end of June, I had another seizure. This time, it was in my sleep. The frightening noises woke up my roommate and she watched it happen. She also wrote down, in detail, what she saw, so that I could tell the doctors that I would be seeing what happened. I went back to the emergency room- this time at a hospital in my hometown instead of the one near my campus. More tests... and a diagnosis. I have partial complex temporal lobe seizures.

That diagnosis broke me for a long time. Internally, I knew that I had epilepsy since I started researching it. It just hurt to have it. It made me feel further away from everybody that I knew. I was angry that my dad was not there to talk about it- I felt like he was the only person who might understand what I was experiencing. I was frustrated with my loss of independence- I couldn't drive anymore, I was worried to do much on my own, I had to start taking medication that made my brain feel strange for a while... It made me feel alone, frustrated, angry, and upset. I continued to read about it... almost every day. I started to joke about seizures with some of my coworkers, I started to talk about my experiences with people that I knew. That started to help me accept what I was going through. I slowly became less angry.

It's been more than a year now and I've come to terms with my diagnosis. I can drive again, I've run two half marathons, I've lost weight, I moved across the country, I'm in graduate school... and I'm trying to better myself. It's not perfect. I'm still angry. I don't want to be on the medication that I'm on. I don't want to have to think about seizures every day for the rest of my life. That's just reality.

I am bothered, though. The general public just does not know about epilepsy. People have a ton of misconceptions about seizures. Some people don't understand what a seizure is. It is National Epilepsy Awareness month, yet many people just don't know the facts.

In honor of my father, I want to help educate people. I think that sharing my experiences can help overall awareness and help people understand seizures.



  1. I have Epilepsy. Found out when I was 12 yrs old. Sad thing, I was misdiagnosed for about 15 years. Not the Epilepsy part, but the type of Epilepsy. The meds. I took really messed with my mind. Being a teenager on medicine that made me sick (emotionally & physically) is not a good combination. My friends have always been understanding about my Epilepsy so I'm very blessed in that aspect. What people can't fathom is my daughter saw her mommy have a grand mal seizure when she was 2 yrs old. Now me having seizures don't effect her. It's sad that she isn't shocked so young. A friend asked me who to call if I have a seizure. I said my husband & my daughter. My daughter knows how to take care of me after I have a seizure. I also told her Girl Scout troop leader if I ever have a seizure don't force her to leave me. She knows what to do & would probably become VERY agitated if they made her leave. I am proud to say my daughter is more "seizure smart" than most adults I know!