My house is a wreck. There are boxes everywhere. I am trying to unpack and get settled. We are still waiting for some furniture to arrive. The fence just got finished today, so up until now the dogs have had to go out on leashes every few hours, which they aren't used to, so that's been a whole situation- accidents everywhere, all over my new house. It's been... stressful. But I love my house. I love Indiana. It's been amazing. I have had 3 seizures since the move, stress and trying to adjust the sleep schedule will do that. And it's ok, it's to be expected. I tell myself that anyway and shrug it off. Am I pissed off about them? A little, sure. They're annoying and exhausting and they upset my kids.
When we first got to Indiana, we went to the BMV to switch the truck registration, our licenses, all of that fun stuff. When you move to Indiana, you have to take the written test. Knowing my brain would NOT function the way it needs to in order to take the test (reading multiple choice questions and then answering them is really hard for me, I have to read the choices over and over), and because I can't drive anyway, I opted to just surrender the license and just get a state ID. The lady looked shocked. She said "You know if you choose to get a license later, you have to start all over and take the driving exam." And I just kind of laughed and told her I probably should anyway and I'm fine with that. I haven't driven since... I can't even remember. It's been long enough that I should be tested before someone just hands me my license again, so I'm 100% ok with that. I explained that I have epilepsy and it's the most responsible decision. She respected me for that and gave me my ID.
In the middle of trying to sort out our new life, we see the news about Cameron Boyce. (If you have somehow missed it and have no idea what I am talking about:Please read this) Randy asked if I saw the news. I hadn't yet, so he handed me his phone and I fell apart. It was hard to read for many reasons. Yes, SUDEP being one of them but my kids loved him. Quinn especially. She has him on her pajamas and on her sheets and her backpack. We are all about 'The Descendants' in this house. And the kids watched 'Jessie' all of the time. I would always groan and say "Ugh.... are you watching 'Jessie' again?" But honestly, I loved watching them watch it because they laughed at the silliest things. Cameron Boyce was on my TV a lot.
The kids saw me crying and asked what was wrong- their first worry is that I'm having an aura or that my head hurts when they saw me covering my face, when they saw that I was crying, they asked why. And that put me in a hard position. I want to be honest. I want to tell them why I'm crying, I know they're going to see this news somewhere else. I would rather they hear it from me but oh my god, what scary news to hear. One of their favorite actors died and he died because he had epilepsy.
My kids are rockstars. They handled the news really well. Quinn always asks questions and her first was "But you don't have those kinds of seizures anymore, right?" (referring to tonic-clonic) and then she said "And you take your medicine too, right?" Someone listened really well when she got to go with me to my doctor appointment. Brody hugged me tight, listened and made jokes. That's how he deals. Quinn has been asking questions off and on all week. She has asked about "Carlos" which is Cameron Boyce's character in 'The Descendants' and she asks a lot of questions about SUDEP. I answer them as honestly and thoroughly as I can. I told her since the doctors don't know a whole lot, neither does Mommy and she seems as satisfied with that as she can be.
I hate that right as the kids are going through the huge adjustment of moving, this huge scary thing happened that hits so close to home for them. For us. Every time something new pops up with his name on it, I cry. He seemed like an amazing human. He was doing great things. Contributed to a lot of causes.
There is suddenly a lot of epilepsy and SUDEP awareness in the news and it sucks that it took someone famous dying to make that happen. Maybe it will help erase the stigma, who knows.
For those of you trying to figure out what SUDEP is or wondering about risks and things like that, here is a link: https://www.neurologytimes.com/epilepsy-and-seizure/5-important-facts-about-sudep. It had some good stuff. But as I said, they're still trying to figure it out. SUDEP is like SIDS- terrifying and not understood yet.
After my first (tonic-clonic) seizure, my mom googled too much and then insisted on sleeping in my bed with me and wouldn't explain why. This. This is why. Now I get it. But when you're 32 and your mom won't explain it, your body hurts, and she wants to sleep next to you, it's odd. But she was scared and didn't want to scare me. After seeing the news the other day, my friend said if she knew SUDEP was a thing, she would have been sleeping outside of my window when I was experiencing tonic-clonic seizures. I have complex partial seizures now, for anyone worried, and they happen in the mornings usually an hour or two after I wake up- I go into a state that is similar to sleep walking and I don't know what I'm doing, and then "Seizure Katie" normally makes coffee and goes about the morning routine and when I snap out it, I don't have any recollection of it. It's very strange, but that's typically how my seizures play out. So for those of you that read about SUDEP and checked on me, thank you, but my seizures don't occur at night, and I take my meds and do all of the things I am supposed to. And maybe I will one day be a cyborg and seizure free and then we won't have to worry about any of this bullshit anymore.
So here we are.... July 12th. 5 days seizure free.
