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Anatomy of a Storm

It sometimes announces itself with a dizzy spell, but mostly it begins without warning.

It simply begins with a pause.

In this case, it begins about ten minutes before Schuyler’s final soccer game of the season. It’s a complex partial seizure, and in many ways it is indistinguishable from the absence seizures that she seemed to have a few years ago. I say “seemed” because then and now, Schuyler’s seizures have evaded detection by the EEG. We’re told this isn’t unusual; both absence and especially complex partials can be elusive. Like Bigfoot, they mostly define themselves by the evidence they leave behind.

Schuyler simply stops on the field. If past seizures are any indicator, she probably stops and looks upward, slightly over her sightline and slightly to the right. If you were to notice her in this state — and you would be very unlikely to do so — you might see her mouth moving ever so slightly. She might not even stop walking, not entirely.

It probably doesn’t last for long, maybe ten or fifteen seconds. But Schuyler is the unfortunate victim of poor timing this morning. One of her best friends, a girl whom Schuyler has known since kindergarten when they attended special ed classes together but who no longer see each other often, this girl is on today’s opposing team. She has brought a gift for Schuyler, a stuffed dog, and comes running onto the field excitedly, the dog extended before her, as Schuyler begins coming out of her seizure. Her friend grabs Schuyler’s shoulder and spins her around excitedly.

Standard Model Schuyler would have erupted into squeals of joy and leapt around the field like a monkey for the better part of the morning.

Post-Ictal Schuyler doesn’t recognize her oldest and best friend, at all. Post-Ictal Schuyler stumbles back in fear, her hands flying up to defend herself. Her friend, not understanding, keeps coming. Schuyler steps back and then throws herself to the ground, her hands over her ears and head. When the coach comes over to see what’s going on, Schuyler is sobbing uncontrollably.

Julie makes her way to the players’ bench. Maybe a minute after she sits with Schuyler, she waves me over, too. Schuyler is red-faced, her eyes as tired as I’ve ever seen them. And she is still crying, hard.

“I don’t know why I’m crying,” she says between sobs. “My little monster is so mad at me!”

This is Schuyler’s state for another two or three minutes, and it shows no sign of stopping. Finally she begins to quiet, and when I put my mouth to her ear and make a little fart noise, she suddenly starts to laugh. And that’s it for the crying. We ask her if she wants to sit out the game, or even go home. She brushes us off.

When the game begins, we return to our seats as Schuyler roars onto the field with unprecedented speed and fury. She kicks the ball, hard, sending it low and fast over everyone’s heads. A few seconds later, she runs up to the ball again. And this time she kicks it with every ounce of her power. It flies directly into the acrylic wall separating the field from the observers with a loud BOOM. Everyone gasps and then laughs.

But Schuyler isn’t laughing. She stands for a moment, staring darkly at the spot where the ball hit, before running off again. I know that expression.

Schuyler is angry. She’s furious, and she doesn’t know where to channel that anger. Later she says she’s mad at herself, and then clarifies that she’s actually mad at her little monster. Schuyler compartmentalizes and anthropomorphizes her disability, and it usually helps her. But not when the thing she needs the most is to kick the crap out of something. This time, it’s the ball.

Schuyler continues to play, but her anger passes and she has her usual good time until the final buzzer. After the game, she stays to pick up her trophy. Hey face is happy, but her eyes are tired, a special kind of tired that we only see when she is Post-Ictal.

As we get in the car and drive home, Schuyler is willing to talk about her seizure. But she does so in the way you would discuss a bad storm, in the bright sunlight of the following day. Schuyler assesses the damage, picks up the pieces and moves on.

Her sad, helpless father will remain standing in the wreckage a bit longer, lost in his fear.

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