Wednesday, November 30, 2011

Ending Epilepsy Awareness Month

I've been doing a terrible job of being a regular blogger. That's embarassing. Sorry to all my loyal blog readers.

In my defense, I've been overwhelmingly busy with school, work, and life. I've been trying my best to become as fit as is possible. It definitely has not been the most easy thing that I've ever done. Every time that I go to the gym, I push beyond some barrier that I have had. I am continually impressing myself, even though I don't talk about it much. It's really hard for me to see physical changes in my body when I look in the mirror, but I can tell that things have changed when I continually have more endurace and strength at the gym or in a run.

The most intense struggle is still food for me. I do feel like I have been improving on the eating front. I'm definitely not at the point that I should be... and I know that if I spent more time focused on what I was eating and eating correctly, I'd be much closer to my weight goal than I am right now. I have noticed that when I am stressed out and overwhelmed, I turn to food that I know is terrible. For instance, for the last week and a half or so I've been really stressed out with school and work.. and instead of making healthy food choices, I've been eating an immense amount of greasy, high calorie, disgusting foods... food options that don't really even taste that good. Clearly, I'm still an emotional eater.


Anyways, that wasn't the purpose of this post. As some of you know, I am a person living with epilepsy... not only that, but I'm a person with epilepsy whose father passed away unexpectedly from a seizure. As not many of you probably know, November is Epilepsy Awareness Month.

As someone with epilepsy, I wanted to do something big this month. I wanted to raise lots of money to donate to the Epilepsy Foundation of America... but I didn't. I wanted to have some event in which everyone in my community would learn about epilepsy and understand what it is like. I didn't do that either. I mostly just talked about it in facebook posts, with my roommate, with my family members... and tried to learn as much new information as I could.

My diagnosis came more than two and a half years ago. I first started having complex partial seizures in the late fall of 2008, but I didn't know what they were. I thought I was having some kind of a schizophrenic attack (thank you for the paranoia, psychology degree), so I didn't tell anybody. Eventually, I was having complex partial seizures every day... at least once. It was so overwhelming to think that I had such terrible schizophrenia.

I had my first grad mal seizure in February of 2009. I was at work in an on campus food court, chopping lettuce, when I started to feel one of the "attacks" that I had been accustomed to. My vision started to fade and the last thing that I remember seeing was the lettuce starting to turn spotty in front of me. The feeling was absolutely overwhelming. After that, I felt like I was dreaming. I was floating through clouds and the feeling was absolutely peaceful. Then I woke up, looked around, and saw a half dozen people standing around me in a circle. I had no idea what had just happened. Everything after that is a little bit of a blur. I know that lots of people were asking me questions. I know that someone gave me orange juice (and I was worried that they'd charge me for it, because I didn't have any money on me that day). I know that someone got a chair for me from the  managers' office... and I know someone asked me about epilepsy and seizures.

From that moment forward, I was convinced that I had epilepsy. I researched it and everything fit. However, lots of testing came first... I had an EEG, an MRI, I wore a heart monitor for a day.. I had an ultrasound of my heart. Everything came back fairly normal. (Can I just tell you that EEGs are the strangest tests that exist? I literally had wires glued to my scalp.) I was told that I probably had an episode of syncope. Basically, regardless of everything that I said, I was told that I only fainted and to not worry about it. Something about how I didn't have enough breakfast, although I had a bagel that day and most of the time, I didn't eat anything.

I continued to have complex partial seizures frequently. Sometimes they were so horrible that I would vomit afterward. It was such a tough experience for me, because I knew that something was very wrong, but I was feeling as though nobody was interested in hearing about it from me.

Fast forward a few months to June of 2009, I had a second grand mal seizure in my sleep. I woke up my roommate with a horrible scream noise when my seizure began and she wrote down everything that she saw. She was well aware of my frustrations with going through a medical challenge with no real answer. I called my mom, who drove me to a different hospital than I had visited the first time. I saw a doctor who quickly diagnosed me with complex partial temporal epilepsy. When I heard that, I was relieved. An answer. Finally. (yes, I didn't know what the hell "complex partial temporal meant", but it was something.)

Since then, I have learned a lot about epilepsy, about seizures, and have felt a great connection to a group of people who also live with epilepsy. I've begun to feel very driven to help other people who are struggling with seizures on a daily basis... and those who have yet to be diagnosed. I mean, I thought I had schizophrenia, a friend of mine thought she had a brain tumor... the fact that we don't talk about epilepsy definitely says something awful. We need to talk about it. The world needs to know what seizure are, what epilepsy is, and what to do if someone has a seizure.

People die from seizures every day. My dad did. He was one of my heroes as a child (along with Abe Lincoln and Laura Ingalls Wilder). The world needs to know how prevalent epilepsy and SUDEP (sudden unexpected death from epilepsy) is. Three million people live with epilepsy... in the United States alone. Something needs to be done.


Last Thursday, on Thanksgiving, I ran a half marathon in memory of my dad. I wore a purple shirt for Epilepsy Awareness with a photograph of my dad on the back.

I wanted to PR in the race, I wanted to do really well... I wanted lots of people to see my shirt and feel like they wanted to learn more about epilepsy.

I ended up getting the PR that I wanted. I finished the race in 2:50.34 which is SIX minutes faster than my previous best time. People commented on my shirt along the way. I was beyond pleased with the race, with my time, with everything.

I ran the race for my dad, for epilepsy awareness... and I felt like my dad was with me the entire time.

November is ending, yes. However, we still must be aware. We have to talk about epilepsy... to learn about it, care about it. It is imperative.

I will continue to advocate for those with epilepsy, for myself. I don't want anyone else to die from a seizure. I don't want anybody to lose a parent at a young age as I did. I don't want people to be afraid of strange feelings, thinking they are something other than what they are. I want everyone to talk about epilepsy, to understand it... it will save so much struggle in the end.

My epilepsy awareness race shirt:


  1. This is a great post about the things that have been going on recently. You are right about the food. You have been very good about trying new things lately but most of the haven't stuck and sometimes convience and emotions can lead to bad food choices. However, I'm proud of the work outs you've been doing at the gym and now you have a spin bike to use at home and weights at home and wii workouts so there are def. no excuses to getting a good workout in when the weather is bad or whatever. I agree about's sad that people could have it and think they have soemthing else and how long it can go untreated and if people just talked about it and understood some of the symptoms it could be treated much more quickly. Saves some heartache.