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Little Monster

Schuyler will tell you that she has a little monster in her head.

When we told her that there was something in her brain that makes it difficult for her to speak and makes it harder for her to learn things and which gives her seizures, she decided it was a little monster. She calls it Polly, because that’s what she heard when we told her it was called polymicrogyria. Schuyler will tell you many things about her monster. Perhaps the most important thing she will share with you, and I’ll quote her directly now from something she said not five minutes ago, is this:

“I hate my little monster. But I like me!”

Schuyler grew up with the metaphor of her broken brain having a monster living inside it. It was more than a convenient literary device. It was a way to cope with the sudden news that our little girl had a significantly malformed brain, one that was likely to throw challenges both large and small into her path for the rest of her life. When parents first learn their child has a disability, particularly one that threatens their life, there are a number of paths they can choose, everything from acceptance to abandonment. For us, taking up the fight against a monster “with rubber swords if necessary,” as I said in my book, is a lot easier to conceptualize than trying to make peace with the fact that one part of our beloved little girl was hurting her. How do you fight a little girl’s brain? And yet when it treats her so malignantly, how do you not?

Schuyler absorbed the metaphor of the monster at an early age, I suspect. This troubles some parents of kids who, for whatever reason, have difficulty with metaphors. For some reason, Schuyler has always embraced them. For so many years, she existed mostly in an internal world that only she knew, and even though AAC helped build bridges to the world for her when she was about five, I think the use of metaphor has always provided a way to make sense of things around her. Something inside her brain is obstructing her progress through the world. Perhaps she, like her father, deals better with it if it’s something separate, something that can be resisted. Schuyler hates her monster, but she likes herself.

Schuyler hates her little monster, but she loves the big ones in the world, or at least the world of movies and books. And while she appreciates them all, it’s the ones who are misunderstood that reach her the most viscerally. Her favorite movie is 2005’s King Kong, but the last act still pisses her off every time. Same for the end of the Godzilla remake, when he’s tangled in the wires of the Brooklyn Bridge, his heartbeat fading to nothing. She has no problem with bad monsters getting their comeuppance; War of the Worlds ends exactly the way it should, as far as she’s concerned. (Except how is the son still alive? Seriously! But I digress.) But the good monsters should be free to live their monastery lives without the military shooting rockets at them.

I think Schuyler has mixed feelings about her own little monster. She shows no interest in embracing neurodiversity; she understands that Polly has fangs, and she dreams of being like every other monsterless little girl she sees. She’s beginning to understand a greater, more complicated truth, that everyone has little monsters of their own. Most of them are even less visible than hers.

To hate Schuyler’s little monster is not to hate Schuyler. It’s to take up a war that she herself wants to wage. The older she gets, the more complicated her realationship becomes with that monster. She could have named it Brainzilla or Satan or Little Green Nasty, but she didn’t. She named it Polly, a shorter and sweeter version of polymicrogyria, a word that baffles with more than its length and awkward pronunciation. I can’t help but wonder if she holds out some small hope of one day negotiating an uneasy peace with her little monster, as I do.

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