Friday, 27 March 2015

purple



Yesterday was Epilepsy Awareness day.

As you all probably know and have heard a billion times on here, my little brother died in 2013 from SUDEP - Sudden Unexpected Death of a person with epilepsy. It's a condition I had never ever heard of until he was ripped from us in the worst night of all of our lives.

I write this because I don't know what you all think epilepsy is. I was ignorant until our Jaden started having seizures. They are scary. I mean really fucking scary. I didn't see many as I hadn't lived with him since he was a little guy but I heard about them. My mom saw them constantly, she helped him through probably hundreds of them.

Ryan works with a woman at a group home who has them frequently, his instructions are something like "if she's still seizing after ten minutes call 911". Holy fuck. Sometimes she stops breathing. Imagine your job consisting of stuff like this?

Anyway epilepsy isn't funny. It is more common than you think. It is so scary to those around the person with epilepsy and can be absolutely debilitating and terrifying to the person who has the seizures.

It's horrible. Scary. Awful. All the bad sounding adjectives.


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I was on my way to work yesterday, and at my second bus stop I saw there was a table set up with purple balloons and cookies and donation bins. An epilepsy awareness stand.

I went over. I couldn't not. Seriously I was drawn over there. I didn't have much to give so I put like a handful of dimes and nickels in the thing, and said "I lost my brother to epilepsy, I wish I could give more" because my hands were shaking and I was kind of frantically dumping change in the box. I asked if I could have one of the rubber awareness bracelet things they were giving out and they said of course and gave me a purple pen and a purple keychain as well.

I said "Thank you for doing this" and promptly burst into tears. Like full on sobbing out of nowhere.

I was SO embarrassed and felt so bad for these girls. I probably weirded them right out. I said sorry and hustled away from them with my face in my sleeves, frantically wiping away tears and doing deep breathing exercises to try and stop looking like a crazy crying person at the bus stop.


I ended up texting my sister about it and she made me feel better, she gets it. 

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My family and a lot of people I know wore the color purple yesterday. Some of them posted pictures on various social media, unfortunately some dork turned it into a gay joke when my dad posted himself wearing a purple shirt. Hurr durr u r gay because purple on a man.


Come on, seriously. Grow the fuck up.

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I just had a really dumb and sad moment where I was looking for photos of Jaden to post just now. I thought "I wish there were newer photos of him online that I could use."

That's the strangest thing when you lose somebody, your brain never seems to fully understand how gone they truly are and then you have to remind yourself. No, brain, there will not be newer photos of Jaden on Facebook. And it's like the news hits you again, like you're surprised about it for a second.


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So in conclusion:


Maybe if you have extra money that you devote to charity or education you can give it to the SUDEP Institute.

Maybe if you hear somebody joking about epilepsy you can tell them about Jaden and others like him. 

Maybe next year on Epilepsy Awareness day you can wear a purple shirt. Even if you're a man and it's sooooo gayyyyy.




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