A few weeks ago, Randy and I got tattoos. Which is something I never thought Randy would do. But I had already decided that I was going to get an Epilepsy Awareness tattoo and asked him if he would get one with me, and he said yes. So we went. And I love them. They are awesome. I love him! He's so amazing.
He chose to go with the Epilepsy Awareness Ribbon and to have it tattered. There's no reason for it to be perfect, this hasn't been an easy battle for any of us.
I wanted a brain in mine, and went with "Carpe Diem" which for those of you unfamiliar with it, it means "Seize the Day"... I had to. I wanted something to remind myself to live in the moment and not constantly throw myself a pity party and the pun was just too good to pass up.
Twenty days until attempt number two. I have a lot going on in my head right now.
I’m terrified all over again, like I was for the first surgery, but this time it’s worse. I have a million new fears. The first time around, I was scared because it was “Oh no, something could go wrong.” But then something DID go wrong… so now it’s “What if something goes wrong AGAIN?” Or, even worse, “What if it goes wrong and they don’t stop in time?”
I keep trying to stay positive. As I’ve mentioned before, I’m usually a disgustingly positive person. I tend to spit out rainbows and butterflies and annoy people with my optimism… the other day, my co-parent actually got on my case for being too pessimistic which is not an issue I usually have. But that has been me lately. It’s just hard to see the light at the end of everything right now.
I have tried to keep myself occupied and my thoughts on other things. I recently got back into theatre. I miss being on stage more than I can describe, but since my brain won’t memorize lines, as an attempt to "seize the day" I decided to volunteer to help behind the scenes. My friend is directing “Legally Blonde: The Musical” and I told him if he was cool with me helping before the surgery and then being MIA for the chunk of time during the surgery and recovery then I would be back in time (if things go like they’re supposed to this time) for tech week and the show open. He said “Cool. Auditions are at 6, see you tonight.” So, I’ve been having fun with that, and staying busy. It’s great to have something to focus my nervous energy on.
I still have people asking me about my seizures- asking me to describe them. How do I know I had one? I just do, take my word for it. I feel like I entered a time warp. I just lost 2 minutes, 5 minutes, 10 minutes, whatever. I lost some weird amount of time and have no idea wtf happened. I’m going to say I had a seizure. I spend a lot of my time during the day watching re-runs of Friends and I do this because it’s safe. I know Friends backwards and forwards, so if I have a seizure, I KNOW. If they were in the middle of their trivia game and Ross asked who the TV guide gets sent to and then Monica is screaming “That’s not even a word!”, I know I missed SIGNIFICANT amounts of dialogue and the boys lightning round in-between those lines. Sometimes I’m not even watching the show, I just have it on as background noise but it helps me keep track of what’s going on, so if I feel an aura coming on, I can turn to the TV and focus on it and see if I lose track of the show. Seems silly, yes, but it works. I know it makes me seem lazy when you find out I watch a lot of TV in the afternoon and I can’t drive myself anywhere, and that’s fine, you can think I’m lazy and feel sorry for me, but I’m stronger than you will ever know. I fight every day. I want to feel better, I have almost forgotten what normal feels like, and I can’t WAIT to feel like myself again.
People who haven’t seen me have a seizure don’t get it. One of my best friends finally (although I hate using the word “finally”)… RECENTLY, saw me have a seizure, and now she’s like “OK, now I know what to expect when you have one. Now I have seen what to do when you have one. And I think I can handle it, can we have a girls night out?” And we got pedicures and it was great. I think before you see it, it can be weird to hear about and not know what to expect. Sure you might see other people have seizures, you might see other people have other kinds of seizures, but everyone is different. I don’t know what I would do if I saw someone have a seizure. I would probably freak out to be honest. But she’s seen me have quite a few now and we were talking about them and I was telling her about when I first starting having them and my family didn’t know how to react and how to respond and they would almost gather around me and all start talking to me, trying to get me to come around…. Imagine your family, sitting around your bed, talking to you, trying to wake you up in the morning. Isn’t that delightful? Lol I don’t know about you, but I’m NOT a morning person. So I would always come out of my seizure just super pissed off. I didn’t know what year it was or what the hell was going on or why they were talking to me, and please get out of my hula hoop- thanks.
My friend almost died laughing. She said she had never thought of it that way.
Time passes for those of you watching the seizure. Time doesn’t pass for me. So I come to, and you’re all telling me it’s been 5 minutes and how do I feel, and all I’m thinking is “Where did you all come from?” Because I was talking to my son and POOF! He turned into 5 other people…. Think about how weird that is.
Twenty days until attempt number two…
And I am terrified.
But I am a fighter.
And I am trying my best to stay positive. Despite EVERYTHING in my body trying to get me to be negative and to run away.
I am going to do this. It’s going to work. And I am going to be seizure free dammit.
I am sick of waking up confused. I am tired of being sick.
…4 days Seizure Free…
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