November, as I’m sure very few people know, is National Epilepsy Awareness Month. What is Epilepsy? Well, by definition it is “a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures…” (Thank you Epilepsy.com). I was diagnosed with this “disorder” at age 17, and thus I know that most people don’t know very much about epilepsy, seizures, and what it means to have epilepsy. Therefore, in the spirit of NEAM (Nat’l Epilepsy Awareness Month) I am going to share my story and some facts about epilepsy.
I had my first seizure when I was 16. I was at the Level 10 USA Gymnastics regional competition in Atlanta, GA, and I was eating breakfast with my dad before my competition. It was early, and I hadn’t slept well at all the night before – in bed late and then I couldn’t sleep – so I was pretty groggy. I was drinking my milk and all of a sudden I looked down and the milk carton was in my lap. “Oh man I’m tired” I said to my dad. And then I went and had a decent meet (fell once on beam on the very last skill of the routine-DOH!) and that was the end of it. Until the morning after prom my junior year of high school. We’d been up all night pretty much, as high school kids do (no alcohol though, I didn’t drink). I was up pretty early and eating breakfast telling my mom and dad about the night and then I had a “brain skip”…it literally felt like my brain was a record player and someone did that “wiiicka wiiicka” thing with it. I dropped my spoon, picked it back up and then it happened again, 3 more times in a row. I looked up at my dad and the look on his face was just purely freaked out. “Man I’m tired” I said and he said “We are going to the doctor”. “No Dad, I’m fine, I’m just tired and my brain is just skipping” …”Abbey, your eyes just rolled back in your head, you are going to the doctor.” Couldn’t really fight with that one.
Fast foward about a month, an MRI, CT Scan, and 24-hr EEG later (google that one…NOT fun!) and the neurologist is telling me I have epilepsy. I would like to add that that was literally the entire visit: “Hallo (he was norwegian) your EEG says you have epilepsy, we are putting you on medication that you have to take every day, and oh by the way you can’t drive for at least 6 months. Have a nice life!” Ok maybe I paraphrased a little bit. No explanation of what epilepsy was, how it and the medication would affect my life, nothing. I was one pissed off teenager with my freedom (aka drivers license) taken away. But, with family support (and a few close friends) I made it through. In reality, I am very lucky in terms of my epilepsy. I have Juvenile Myoclonic Epilepsy (JME) and my seizures are well-controlled by only one medicine. I live a mostly normal life most of the time, and most people don’t even know that I have epilepsy. This can be bad sometimes, like this february, when the medicine I had switched to several years before stopped being as efficient. I started feeling horrible. I didn’t have any “brain skips” where I dropped something, but my brain felt foggy, I was tired all the time, I couldn’t keep my thoughts in line, and I had no motivation to do anything. I would forget what I was saying mid-sentence. It was affecting my job and my life at home. I went to a new neurologist since we had recently moved and got an EKG as a first time patient…It showed that my brain had almost 30 episodes of seizure activity in a 20 minute period. No wonder I was feeling crappy! Thankfully a switch back to my old medicine did the trick.
And that’s my story…I understand that most people don’t really care or have a desire to learn about epilepsy unless they or a loved one are diagnosed with the disorder, and I respect that. I probably wouldn’t either. But epilepsy is a widely misunderstood disease that often carries with it a stigma, and that’s not cool. And so I bring you, in honor of NEAM, some facts/interesting web pages pertaining to epilepsy:
Famous People Who Have/Had Epilepsy:
- This article on epilepsy.com practically makes you WANT to have epilepsy 🙂
- Danny Glover (Actor)
- Vladimir Lenin (1st premier of the Soviet Union)
- Fyodor Dostoyevsky (writer)
- Lindsay Buckingham (guitarist/singer, Fleetwood Mac)
- PRINCE (yep, the one and only)
- Alan Faneca (NFL Player)
- Samari Rolle (Former NFL Player)
Great Websites About Epilepsy:
- Epilepsyfoundation.org – About Epilepsy
- About Primary Generalized Epilepsy and JME (What I have)
- National Walk For Epilepsy
- Talk About It – Website of Greg Grunberg (actor) who’s son has made great strides with his epilepsy. Great website!
- Epilepsy.com – Effects on Thinking
All these websites have awesome information, not just on the page that I linked it to, so if you have an interest in learning about epilepsy, check them out in depth! There is so much information that I’d love to share about epilepsy, but I think first we have to make sure it’s actually talked about and understood…so in the words of Greg Grunberg, Talk about it!
Happy Epilepsy Awareness Month!
I promise I’ll have a recipe or something in the next post 🙂