27: or, the Wildest Ride Ever

bride’s bouquet, volume 1

Love and marriage

My 27th year continues to be the biggest and most significant yet. A little over seven months from meeting him, I married the love of my life. I can’t believe the whirlwind we’ve survived, and certainly never thought the friend’s boyfriend’s cousin I met at a hippie festival would end up becoming my husband when we started on this journey. 

I never thought I’d be one of Those People, the “when you know, you know” people, but I’ve certainly learned you can’t judge someone else’s relationship on time. The minister who performed the courthouse wedding asked how long we’d been together; when we replied, he said he and his husband married after eight months…and that was four years ago.

When you know, you know. 

Trials and hardships truly forged the relationship in fire, and we’ve learned volumes about each other in a matter of months – and in some cases, weeks. The official proposal was no photographed event by some professional photographer, was no on-one-knee occasion – but it was absolutely and 100% perfect. And now, I’m so proud to call this man my husband. 

So much seems it was “meant to be,” that the events of our respective lives were leading us to this crash into each other’s existence, unavoidable and scary – but welcome. 

I didn’t realize how much I’d given up on romance and love until all this happened and I was forced to reevaluate my beliefs. I’ve never been so glad to be proven wrong. 

Medical fun

March 30, I suffered the most serious seizure I’ve had to date. It opened my eyes enough to finally take seriously the Alabama law that forbids driving for six months after a seizure, and I’m now 3.5 months into that period, seizure-free. This has undoubtedly been one of the most challenging times of my life in a city as devoid of good, readily available public transit in Birmingham, but the help and support of friends, my mom, and my husband have all made it that much easier. 

Just two and a half more months to go…

More importantly, it forced me to reevaluate life. I still get depressed and anxious, still fight through the darker urges and desires to be out of this mind of mine, but overall I’ve come to appreciate everything I have and the fact that I’m still alive after such a terrifying experience. 

Lessons well learned

I’ll certainly never forget the significance of being 27 and all it brought to me. Most of it still feels surreal. Signing or writing my new last name is still so awesomely new and awesomely bizarre. I’ve grown so much, experienced so much, been through more than I ever imagined for myself at this age. 

I wouldn’t trade it for the world. 

Here’s to you, 28 (on July 27). Let’s see what you got. 

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speak of the devil

Jumping off my post before last, back to epilepsy!

December 8, I was working on one of my two papers due for the end of the semester.  I was stressed, worried about graduation the coming Saturday the 12th, and about the paper.  I had a paper due the next day as well — both of which were to be 15-20 pages — so as you can imagine my mental state wasn’t the best.

Around 10:30pm I had a seizure.  Of course, I didn’t know anything until I woke up to my mom telling me I’d had one, and making sure I was okay.  Again, we searched for my glasses and once they turned up and I rested for a few minutes, I resumed my paper, determined to finish by the midnight deadline.

I finished it just before midnight (but at what cost?), and god only knows how it ended.  I only made it to 14? maybe? pages, and I haven’t read it since.  I emailed my professor the following day and explained why the ending might suck.  She commented that it did end a little “unceremoniously” but not in a bad way — I still ended up with an A in the class, so it must not have been too terrible.  At least the first twelve pages of the paper made sense.

You’d think that’s it, but…

Later that night, around 2, I had another seizure.  I was still awake at that time, which was surprising given the postictal state is usually one of heavy sleep.  I woke up breathing extremely hard and practically on my stomach, and I remember mumbling to Mom (who had come in again) that I was tired of being woken up to hear I had a seizure.

She decided to take me to the emergency room after the second one (because it was previously unheard of for me to have more than one in one day), and everything checked out fine.  I got a CT scan, got prescribed some klonopin, and went home to rest.

By the time graduation came around Saturday, I had two dark-purple black eyes and a scratch on my cheek.  I think patrons at work thought I’d been abused.  Thank god for Ben Nye concealer, as I was able to hide that mess for graduation.  When I walked across the stage I practically danced.  After a harrowing week of feeling like crap, my mind in another world and not allowed to rest up after that first seizure, I still graduated.

Whenever I think about how I’m not sure I’d survive something, or I think I can’t do it, I just remember that I walked for graduation and finished two papers the week I had two seizures in a row.  I can do anything.

 

accepting a disorder (1/?)

(This got really long somehow.  Blame it on being in the mindset of writing final papers.)

I was thirteen when I had my first seizure, then none again until 2008.  Now it’s up to eight total in my lifetime, from the years 2008-2015.  (Two in 2008, one in 2014, and five in 2015).

Needless to say, this year has been the roughest year of them all in terms of my epilepsy.  But one thing is for sure: I’ve learned a lot about my own disorder and the way it affects me specifically.

Continue reading

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.