Supporting a Friend with Epilepsy

Hi, my name is Daniel Nixon and I do not have epilepsy. But that does not mean that I am not affected by epilepsy. My best friend has epilepsy and I think that her epilepsy has changed my life for the better.

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In the summer of 2013 I was invited (or invited myself. It depends on who you ask) to a garage sale with all funds supporting epilepsy initiatives. When I got to this garage sale I realized, I didn’t even know what epilepsy was. So after selling our garage sale things, I went home and read up on epilepsy. It was pretty staggering the number of people who had it and the number of people who will have a seizure. So I messaged my soon to be best friend and said “let’s do a little more with this.”

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That summer we started attending farmers markets and festivals trying to break the stigma around epilepsy. Through the fall we talked at schools and did a couple more festivals. To top off a great nine months we held a gala which was a huge success. While all that was great and I learned a ton from interacting with people and organizing events, the largest learning curve came from Caitie herself. I always learned something new and found a little more respect for her everyday. For me, going to school is no big deal, I go I sit in class and talk with friends with no fear. I learned that everyone isn’t like me. Maybe some people are nervous or scared to go to school because if a certain event occurs, some people might look at them differently after. It brought a whole new perspective to my eyes.

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Now just because I got a new perspective doesn’t mean everything was all fine and dandy all the time. With Caitie going on many new medications I’ve seen quite a few versions of my friend. She’s really moody in between meds I find. When I first met her, she was on Topamax and she could barely remember what class she had next and her attention span was about ten seconds. After that ten seconds was up she would get this hazy look in her eye and there was no getting her back after that. Then she switched to Lamotrigine. With that drug she reacted and got a rash in her mouth so she was quiet for once. Then she tried Keppra. This was my least favourite drug for Caitie. Keppra (also known as “kepRAGE” for those in the know) really let Caitie voice everything she thought. I was one of the people to stand up to her when she got irritable on those meds, so i was directly in the line of fire. It wasn’t fun. Now she is trying the Ketogenic Diet. While this seems to be working the best for her seizures, it also has some side effects. Unfortunately I was the one to find out that when her blood sugar drops she gets a little HANGRY (hungry/angry). But that can be fixed with frequent meals and snacking.

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So to anyone out there who is closely associated with someone who has epilepsy, remember that even though their meds can make them rageful monsters sometimes, they care about you. Thank you for sticking by them because it’s not always the most enjoyable place to be. But in the end, your support and friendship mean a lot to the person who is affected by this disorder.

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