Looky, Daddy!

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I just want to make it clear: Kathryn had epilepsy before epilepsy became cool. We're not seizure-disorder posers. We're the trend setters.

This is not a happy issue of Newsweek. It makes the stuff I have written about epilepsy read like a friggin' Family Circus comic.

Just a few snippets:

"The mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population"

"Advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition."

"There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is."

The director of my twins' preschool gave me a copy of this magazine on Friday. Apparently, she thought I was looking too well-rested.

I have, for the most part, stopped writing about epilepsy. This is for two reasons. One, every time I write about it, I feel like an asshole. Kathryn's form of the disease is mild, and as much as it has thrown her and our family for loop after loop (after loop), there are thousands of families whose lives to the very minute are governed by this bitch disorder. That said, the second reason I rarely post about it these days is that I'm fucking sick of it. Just fucking sick of it.

Kathryn takes medications four times a day. The medicines are to keep the seizures at bay. The staggered schedule is to manage the side-effects. Every morning before school, I put four pills in a little dish next to her cereal bowl. Two of those pills, my wife and I were assured, "shouldn't have too much of an effect on her school work." When Kathryn gets home and settles in to do her homework, I load her brain up with more of that shit. You know what has an effect on school work? Being eight. Being eight years old has an effect on schoolwork. It doesn't need any assistance, thank you very much, but here we are, loading up my daughter daily with milligrams of pharmaceuticals guaranteed to make adolescence just that much harder. And I don't remember it being that goddamned easy to begin with.

At dinner, we give Kathryn an anti-seizure drug that causes insomnia, but that's okay because a few hours later, we give her a different one that supposed to make her sleepy.

Just fucking sick of it.

Just fucking sick of watching her play on these spring days and wondering when the magic time is. Wondering when she'll have played so much that a nighttime seizure is certain. Just fucking sick of deciding what is worse, the eye-rolling and anger when I ask her to come in, or the look of recrimination later as she wipes the drool from her chin and slurs at me that I should not have let her play so long.

Just fucking sick of wondering if I should tell our neurologist about the latest seizures, because I know the answer will be to add another drug to our already overly-cocktailed child.

Just fucking sick of the med-induced mood swings. Just fucking sick of wondering if the cure is worse than the disease.

Just fucking sick of the medical bills. Of the hundreds of dollars in monthly co-pays alone, and of the fuckers who scream SOCIALIST! whenever healthcare reform is discussed in this country.

Just fucking sick of feeling sorry for her, for myself, for what the MILDEST FUCKING FORM OF THIS FUCKING DISEASE has wrought upon this beautiful, beautiful child.

I'm just fucking sick of it.

Note: I am not going to open up comments on this post. That is a selfish decision on my part and I recognize it as such and I apologize for it. However I invite you to continue the conversation begun here on your own, be it on a blog or with your friends or family. Just try not to say "fucking"as much as I did. I think I overdid it.

Superman

There's a guy in Washington state who wears a Superman costume. Not every day, but every day he can. Most days. This American Life profiled him here. He doesn't think he's Superman. I suspect most people who actually believe themselves to be Superman do not live long enough to be profiled on a radio show, what with the flying and the speeding bullets and all. This guy just likes to wear the costume.

He doesn't go around drawing extra attention to himself. He doesn't ham it up. He just wears a Superman costume. The reasons behind his choice are complicated, like most reasons are, but in his interview he said something extremely illuminating. "A lot of times," he said, "I can't wait to pop [the costume] on because, you know, as soon as someone sees you, their day is different. They've got a story to tell."

It isn't all about him. He wears the costume to give others a story, a touchstone for their day. Think about it. Tell me a single day of yours that would not have been made better if the guy in front of you at the checkout line or next to you on the train or pumping gas one car over from you were wearing a hand-sewn Superman costume. Or, if not better, at least different. And this guy, more often than not, was eager to make that difference for people.

Of course, he gets something out of it himself, mind you. I don't mean to paint him as an Atlas, shouldering a great burden to make others happy, or the clown who smiles during his performance but cries as he wipes the greasepaint off afterward, but still, when asked why he does it, his first answer was that he does it for others. Like a gift we didn't even know we wanted.

Maximum Frown

I was at my doctor the other day, trying to come up with the right way to explain to him that my digestive system isn't working the way it should, which is a tricky thing to do because you want to convey the seriousness of any discomfort you may be experiencing but at the same time you want to have as few things in your ass by the end of the appointment as possible, when a poster for Botox caught my eye:

 

It had the caption "Unretouched clinical photos taken at maximum frown before BOTOX Cosmetic and 30 days after BOTOX Cosmetic treatment."

And as I looked at the photo, I couldn't help but ask myself, "But what about the children?" Seriously, if that were me at maximum frown, how would my children know the beatings were about to begin? I mean, it's one thing to be chased around the house by the person in the top picture, right? But the person in the bottom picture? That would be downright terrifying. Like an android. Or a serial killer.

My kids wouldn't even know to start running.