Consider the following!: Epilepsy sucks.

I don’t know why I keep thinking about it so early, but June 26 is coming up pretty soon.  It’s not an anniversary, or a birthday, but rather the anniversary of my last seizure–that is, my last tonic-clonic/grand-mal/what most people think of when you say the word “seizure” (the jerking, the unconsciousness, all of that great stuff).  My last grand-mal seizure was on June 26, 2008, while I was at The Children’s Place at HUMC and stacking up cots.  I remember feeling weird, jumpy kind of, and then next thing I knew I was waking up in an ambulance on the way to Trinity Hospital’s emergency room for the third time that year.

It will be three years since my last seizure on June 26 of this year, and I can technically try going without seizure medication (2-5 years without a seizure is considered “safe” to try and go without medicine).  But why would I?  Why would you go off a medication that keeps your body from losing all control, regardless of where you are, whether you’re driving or sleeping or on the toilet, just to see if your body will keep itself together?  Sounds pretty stupid to me, but hey, what do I know?  I’m not a neurologist.  I do know that after my three seizures in those a-little-under-6-months, my four in my lifetime (first ever was May 24, 2003), I don’t trust my body to do anything anymore.

The year I had all my post-high school seizures was the worst year of my life.  Not only had I lost my father in late 2007 and my grandmother in April, I’d had a seizure in January – on the fourth – and then on May 27 and then again on June 26.  I was gaining weight because of medicine and just being sick, I could drive then I couldn’t drive when I’d JUST gotten my car back in December of 2007, so I felt like a burden to my mother and Joseph who had to drive me everywhere, and at one point in time I was on more medications than an 18-going-on-19-year-old should have been on.  From my Livejournal on July 6, 2008:

I am simply up to my neck in prescription medications. Twelve pills a day – four in the morning, eight at night – 1,740 milligrams in total, plus whatever is in my Orthocyclen. Add an inhaler, two puffs as needed, which delivers 180 mcg of albuterol in total, and three Advil (200 mg/tablet – 600 mg in total), or 1 Imitrex (whatever I feel more like taking) for migraines. Throw in some IBS on the side, and you’ve got me in a nutshell.

At the time I was switching from Keppra – which made me REALLY gain weight and didn’t help with seizures, obviously – to Lamictal, which I’m still taking, three years later, but even today I have to take three medications (four, if you count melatonin, and I need to start taking it again but haven’t for a while) at night.

So, I think it’s pretty understandable that during the year of 2008, especially within the first seven months, I was the most depressed I’d been since my father died, maybe even since before.  I felt so needy.  I had to rely on other people for transportation when my car had been newly fixed.  I had people asking me if I was okay every two seconds, which, while I’m glad I had people who cared, it got old fast.  The director of The Children’s Place made sure I knew that even if the child-to-teacher ratio was met (it never was, by the way) and if I was 19, I couldn’t be alone with the kids because of my epilepsy.  It’s a great reason, of course, but at the time it was just another heap on the pile of “why Christina is worthless” that was just building and building in my head.  Even at Starbucks, I was constantly terrified of having a seizure while fixing drinks and pouring freshly-steamed milk all over me.  I hated being babied.  I was convinced I had cancer and that the MRIs and CT scans just hadn’t shown it.

Even though I’ve taken control of my epilepsy – no, Lamictal has, not me – I still get down about it a lot, actually.  Every single night when I go to take my pills I wonder why I have to take these.  What did I do to make my brain decide it wanted a reset every once in a while and render me unable to even talk properly for weeks because of a bruised tongue and cheek and sore muscles and the inability to drive for six months seizure-free under Alabama law?  What happens if (but I always think ‘when’) the pills stop working, when my body grows immune to it and I have a seizure again?  Can I just go back to being a kid and not having to take any pills except for the occasional antibiotic?  Why do I need three at night?  I mean, every kid hates taking pills, but I never grew out of it.  I still get nauseous probably 97% of the time I take my pills at night and feel like throwing up for hours afterward.  It’s horrible and I don’t know how to stop it – I’ve tried everything, including pills in pudding, and nothing helps.  Or it helps for a while and stops.  Psychologically I never grew out of the fear and hatred of pills. And all of it stems back to “well, if I weren’t so screwed up, I wouldn’t have to take them.”

There are rarely moments when I screw up and don’t think, “What’s wrong with me?  Everything is wrong with me!” I know that sounds dramatic, and yes I’m on medicine for depression but something about the year of seizures made something open up inside me that I can’t get closed now.  If I oversleep for work, I get upset more than I feel I would normally and cry and my mind just goes – why am I screwed up?  Why am I such a failure?  And it all goes back to the seizures.  I don’t know if anybody really knows how depressed I was that year.  My mom and Joseph both have and had an idea, but there is something so very deep in my mind that just screams, “You’re screwed up.  You’re messed up and there’s nothing you can do about it but to keep fucking up everything for everybody!”  For something I can’t even control…how stupid is that?

I don’t know what happened that summer with my body.  Was it just the ceasing of major hormones of puberty and my body finally just settling into itself as Christina the Adult?  My first seizure was when I was 13, so I could see it having to do something with puberty.  But how will that affect pregnancy, whenever I have kids?  Won’t I have to be taken off my Lamictal?  What then?  What if I pass it down to them?

The paragraph above and the thoughts contained therein don’t really ever go through my head when I’m upset about it or something else that has made me feel like something’s wrong with me.  Even migraines make me hate my body and hate myself.  But they’re still things I worry about and things that I feel a 21-year-old should not have to worry about.  I hate having to tell doctors, when they ask if I have any conditions or am on any medication, that I “have epilepsy” (I still have trouble identifying myself as an epileptic because I don’t think it should be something that defines someone), or that my Lamictal is “for epilepsy.”

But I guess that’s the real world, and I guess I’ll always have to be on seizure medication unless I want to risk another seizure and then…well, we’ll see when I get there.

Happy Upcoming Last-Seizure Anniversary, self!  Maybe if you make it to five years we can try to get off medication…but we’ll see.

We’ll always see.

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One thought on “Consider the following!: Epilepsy sucks.

  1. It’s your Scarlet “E” I suppose. For almost two years now, every time I go to a doctor and make it to the “Check all that apply” section, I have to checkmark “cancer” and it makes me want to cry every time. Obviously, you’ve been dealing with this for a while now, but you’ll never stop having to deal with it. I am sorry it’s hard. I know it is. Happy anniversary!!!

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