Epilepsy, you guys... It's kicking my ass. I mean, let's be real about it.
I miss driving. I miss having a job. I miss being onstage (community theater was SO MUCH fun). I just miss being an independent adult.
Do you know what else I miss? My kids saying "Remember when...?" And I REMEMBERED what they were talking about. And now I just stare at them, confused, and I have to tell them that I don't remember. It's so weird.
In November, I had my Video EEG... because I haven't had enough of those. And then I had those "Koko the Gorilla Tests" as I call them, which is just an obnoxious amount of puzzles and questions and just, the worst. But they got whatever they needed.
And then in March, I had super invasive surgery to test my seizure patterns and I was stuck in the hospital for ten days- no visitors allowed, because the world was officially upside down.
And then I came home and now we all have to stay home (which I'm used to anyway) so I sit here... trying to figure out what to do with my new everything. We have this beautiful new house. And the kids are going to these AMAZING new schools.(Well, they are sort of going to them.)
I love my neighborhood, the town we are in, the people we live near, the...everything. And I can't do anything. I can't drive around and explore. I can't do much of anything- not on my own. And whenever I start to feel really down about epilepsy kicking my ass, I realize that epilepsy is kind of the reason I have this awesome house and that I'm here. And it's so weird that this stupid struggle brought me closer to my amazing husband- it's rare that when you're just dating someone and you have a crazy seizure that they're like "Single mom diagnosed with epilepsy? Challenge accepted."- but he's amazing. And had epilepsy not prevented me from driving and made it so I had to give up the catering job I had, I wouldn't have ended up at Naughty Oak where I made so many great friends (who feel like family) and met such wonderful people. And as much as I hate this stupid disability (because that's actually what it is even though I hate saying that), I look at myself and realize how lucky I am that my support system is SO SO amazing.
Sometimes though... Sometimes epilepsy just sucks. And that's really all there is to it. Sometimes, I find myself on days like today... talking in circles. I'm currently only 4 days seizure free (there was no coffee involved!), but we are trying to get the neuropace approved- my dr is trying to convince whoever "they" are that it is not elective (they aren't scheduling any elective surgeries because of the Coronavirus) and we should be able to schedule it once my brain is healed from the other surgery- which he thinks will be June... I feel like it will be never.
While I definitely hate these damn seizures and everything that epilepsy is doing to me physically, I try to keep believing that it's making me a stronger person emotionally. I get shocked whenever I look in the mirror and see that my hair is gone, or coming out of the seizures when I go to touch my head and feel that my hair is gone- I think as trained cosmetologist, being bald is kind of a shock when you forget, but I'm trying to be ok with it.
One day, I will be able to read this quote again and go "Hell yes. Epilepsy challenged me and I didn't let it defeat me". And that's all I want.
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