Living in the light

Pleased with herself
Originally uploaded by Citizen Rob.

One of the most positive and yet disquieting things about writing what I write online is hearing from other parents of kids with CBPS or one of its related polymicrogyria (PMG) disorders. It's disquieting for the same reason that it's postive, wonderful even. There just aren't very many of us. Really not at all.

Think about it. When Schuyler was diagnosed with her monster in the Summer of 2003, there were supposedly no more than about forty documented cases worldwide. Forty. There have been more U.S. presidents than there were diagnosed Congenital Bilateral Perisylvian Syndrome sufferers in 2003. A city bus could have carried them all, and these were cases scattered around the world. About the same time Schuyler was diagnosed, the first CBPS case in Asia had just been identified. THE FIRST IN ASIA. Asia's got a lot of people, I hear.

As more doctors became aware of PMG and learned how to identify it with a brain scan, the numbers increased. By the time Schuyler had her appointment at the University of Chicago in 2005, that number had grown to about three hundred, roughly the size of a college marching band. (I imagine Schuyler standing in the tuba section.) I'd guess that in the year and a half since then, the number has probably topped a thousand.

Out of a world population of 6.5 billion people.

Without the internet, I suspect we could go our whole lives without ever meeting another person outside of the University of Chicago who had even heard of Schuyler's monster, let alone anyone who had it or who had a family member with it. With the internet, and with all the writing I've done about Schuyler, I meet parents all the time. I have even heard from a young lady who had a mild form of it.

It's a tricky dance. Recently, a few people have been asking to know more about Schuyler's use of her Big Box of Words. At first I was surprised by this, because I felt like I'd been writing about it a lot. Maybe I just feel that way because I've been covering it in the book, but perhaps not so much here. I'll sit down in the next day or two and write something at length about it, because it really is pretty interesting and she's doing very very well on it.

But a few messages that I either received in email or didn't make public said that not only were people interested, but they had the right to DEMAND to know more because they had given money to help buy the device. I have to be honest, it was a little creepy. In their eyes, donating to Schuyler's device fund meant that they were somehow buying the right to dictate how much of Schuyler's privacy I violate here.

And I do violate her privacy, a lot. It's something I think about fairly frequently, and I've had reservations all along. But in the end, it's my choice, and Julie's, and one day it will be hers. If I get published, she'll be known at least in some small way as "The Mute Girl Who Was In A Book", which will have a lot more impact on her than anything on the web, but still. She may one day ask for all of this to come down, and if she does, then you'll come here and find a blank page, simple as that.

I hope it doesn't happen, though, because I think Schuyler's life has been enriched by the people who have come to know her through these pages. It's like she has the world's largest extended family, and without the embarrassing drunks you deal with at the holidays. Well, you know. Not since I had to stop drinking.

More than that, though, I think the biggest loss to the world if Schuyler ever decides to go offline would be to the people who come to the internet with a new CBPS diagnosis in their hand. They come looking for something scientific, something that will give them hope, and the world of Schuyler's monster is still small enough that most of them find her pretty quickly instead.

They go out looking for hope, but I'm here to tell you, there's not much of it out there. Scary stories about seizures and choking and retardation, and death. That's what we found in the summer of 2003. But now, they can also find a little girl with purple hair and a King Kong fixation who talks with a robot voice and lives her life turned up to eleven. They can see that the future may have just gotten different from the one they imagined, but it didn't lose its possibilities.

And while I'd love to take credit for that, the truth is that I just hold her up to the light. Schuyler is the one who inspires.

I recently heard from a mother who had just gotten a PMG diagnosis for her little four year-old daughter and who discovered Schuyler when she went looking for info. We exchanged a few emails, and she sent me a photograph of her daughter. One thing that I found fascinating about the pretty little girl in the photo was that just like Schuyler, there was nothing that indicated that this child was broken. I suspect that she lives in a world much like Schuyler's, where others sense that she's different but don't know why, and are enchanted rather than repelled.

But the really interesting thing about the photo is how much she actually looks like Schuyler. Dark features where Schuyler's are fair, but with the same big, slightly sleepy eyes, the same little rosebud lips and the same cheeks. I'm not sure if it's just a coincidence, or if somehow this is the gentle stamp that Schuyler's monster leaves on her and her new-found doppelgänger.

Fortunately for them, it's not a telltale physical trait that cruelly brands a face or a gait the way that so many broken children wear their own monsters, but an ethereal beauty that draws you into their strange, wordless world, whether you want to or not.

So yeah. I hope she decides to live in the light for a while.