Friday, May 8, 2009

Where It Came From

Daney's neurologist has had to convince Dave and me that our daughter's recently-diagnosed epilepsy is genetic.

We've told him there's no one in either family, no one, with epilepsy. We're sure.

But I've done my own digging, (of course), and I've found that quirky things which both families do have are definitely related to the condition.

For example, Dave and his brother have had years of sleep terrors. Like Daney's seizures, these terrors occur at night, during exhaustion.

My family has a history of migraines, which are also tied to epilepsy. The National Migraine Association claims that "both disorders are characterized by paroxysmal, transient alterations of neurologic function." I think that means that it's the brain that causes these short, frequent episodes. Which brings me to the prefix "epi": a medical term derived from Greek that means pretty much any preposition.

Julius Caesar, Napolean, and Vincent Van Gogh all had epilepsy, but we aren't related to any of them.

The creepiest connection comes from something I don't like to happen, or think about, let alone bring to the public domain. It's this weird thing that happens to me after I do yoga, when I'm all tired out and laying there, breathing, in sivasena. After a few minutes, when my mind is clear (for once), the world behind my eyelids begins spinning a little, then a little more. Then it feels like my spirit or something is pulled out of my body; it starts from my head, and just rises for a second or two, hovering above me, until it it sucks right back in.

I know.

It's crazy.

I never thought it was really real. I thought maybe I was falling asleep.

But a New York Times article published in 2006 about a study in Geneva reports this occurrence (what some people, but not me, call an out-of-body experience) as a current flow, related to epilepsy.

So, I'm learning that magical Daney, our only daughter who prays for peace and read the entire Harry Potter series in three weeks when she was nine, who plays Calico Critters with her little brother for hours, who sews pillows and writes letters, love notes, and stories, this girl is an unfortunate confluence of two families' neurological conditions.

I see now how her doctor can say her epilepsy is genetic.

Which doesn't help as I hold that shaking girl in my arms, or as I watch her run in a field and wonder if she's getting too tired. It doesn't help when she has to stay up all night for a seizure-induced EEG, or when she has to have a blood test, or when I watch her sleep, zonked out by the medicine.

And it doesn't help at night, when I hear her mattress creak or crunch.

All this, after all, is just the where the condition came from. It's not why Daney got it, or how, or when, if ever, it will all be behind her.

How it helps is that I tell myself that Daney's epilepsy has come from her families, families which also have otherwise good health and happiness and strength and coping skills. She knows all that's there, and I know it, too, and that's how we get through it.


Christy Raedeke said...

Kinda freaked about your out of body experiences...

BTW, when I see beautiful Daney gracefully scaling the Eiffel Tower at the park or running through the cold creek it's hard to believe her brain has a terrible secret life of its own at night. What a mystery.

Jennie Englund said...

Christy, I know. Creepy! Thought you might kinda like it, though.

That little Daney. Oh. The gift in it all is her sheer cheerfulness.

You know what I'm talking about.

Is a daughter just such a special thing?