Posted by Duff

Disclaimer:  If you know The Dervish personally, and I didn’t brief you beforehand, please, please don’t take it personally.

Bear with me.  I didn’t expect to have reason to write this post any more than you expected to read it, because if you’ve been reading, you know The Dervish and have chosen to subscribe to her brand of piss and vinegar.

She is still the same person. I say that with genuine belief, but also to remind myself, because there are now moments I look at her and juggle conflicting ideas of who she was vs. who she is. Which is silly. Because I know my girl.

Only now, I know another thing about her, and that’s that she has childhood absence epilepsy. Or, as I’m going to start calling it, CAE. Because me and CAE, we’re going to be likethis for at least a couple of years. 

Dervish, gardening

Where did that even COME from, you’re probably wondering, and you can stand behind me in line for that answer, but we may never get it, because it might be genetic (they didn’t know what it was in generations past, if they noticed it at all) and it might not. This isn’t really the time you or I want a shrug as an answer, but sometimes, that’s all we get. I invite you to shake your fist along with me. Let’s, you and I, be the most insolent fist shakers this side of CAE.

What it means is that The Dervish is prone to daily spells of stopping in her tracks, inspecting the tips of her eyelashes with her pupils, and being on pause. She picks up where she leaves off, and if she started in a position requiring complex balance, she may be picking herself up from the floor.  Usually, it’s unnoticeable. At night, when she’s exhausted, if you’re nearby, you might try catching her. She doesn’t remember it, and she doesn’t know anything is wrong.

It started a few weeks ago (it tends to start between 4 and 12, and her brain decided to go for the early end of the spectrum, which may give her a better prognosis), with us thinking she was exhausted from dropping her nap. “She’s out to lunch,” we’d say, because we’re douchebags like that. It’s okay to think that about us, because we do. Ignorance, in our shoes these days, is no excuse.

Speaking of ignorance, before last week, I knew nothing about epilepsy except what I’d seen on TV or in movies. You know what I mean–the grand mal, convulsive type of seizure that most of us think of, the kind that terrify us, and likely embarrass those plagued by them, and (insert your expletive of choice) the whole lot is awfully unfair, don’t you think? Because there’s so much more to epilepsy than that. There are real people, really young, tiny people brimming with promise and confidence (before the outside world would have them believing otherwise), and their parents who love them as fiercely as we all love our kids.

And speaking of fierce, how does someone like The Dervish own this? How dare the brain of an ass-kicking, name taking ball of fire who streaked into the world with irrepressible purpose dare do this to her? Dare frighten us?

There are worse things, and I know there are worse things. These other things, diseases, syndromes, accidents–things I’ve been mentally preparing myself for since the reason for this post brought me face to face with her mortality–they are plaguing other children, other parents, and I can’t be sorry enough. My Dervish has a well above average chance of kicking this thing before her teen years, if not sooner, quite possibly without a convulsive seizure.

Some moments I focus on that. Sometimes I think of the worst case scenarios.  With me, lately, you never know what you’re going to get. Hey, epilepsy, you biotch. You and I have something in common. Let’s go bowling, so I can wipe the floor with you.

But short of medication not working, or brain surgery, or a service dog to help her with a far more serious strain of this condition, there is still everyday life to contend with, and people who won’t know enough to understand, and I can’t be mad at them. I certainly hope The Dervish will never have to feel embarrassed if overcome at a birthday party or on  a date. That she won’t become a joke behind her back, that she’ll never feel different, that she’ll know I never, even while still trying to make peace with this, thought of her as anything other than she is: perfect.

I didn’t think it was possible to love her any more than I did just a few days ago, before I knew.  So, if for nothing else, I’m thankful to love another person, for sure, more every single day. Whether she needs it or not.

For responsible information about epilepsy (rather than a bunch of sites that will freak you out) visit http://www.epilepsyfoundation.org/

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