Tuesday, July 30, 2013

"Why is there a coyote on your head?"

While walking around Comic-Con this year, I got more people than usual asking me why I had Pocket Coyote riding on top of my head. Some people tried to guess what character I was cosplaying; others assumed it was some kind of inside joke; one person thought I was doing it to amuse a baby being carried by a man ahead of me in line. And when they realized I wasn’t in character, or kidding with nearby friends, or in any way related to that baby, I got the same question:

“Why is that thing on your head?”

For the first few hours, I could get away with saying something flippant: “He’s navigating for me,” or “He’s more comfortable up there,” or (my favorite) “He’s the brains of this outfit.” But eventually those replies began to sound more snarky and irritated than I meant them to, and I resorted to the real answer:

“Because there’s a hole in my head.”

I hadn’t gotten so many looks of astonishment and/or horror since I started styling my hair to cover the scars as a teenager. Usually the only people who find out about my little abnormality are hairstylists and anybody trying too hard to sell me a hat. But at Comic-Con, it’s sort of okay to be weird, even if you didn’t get up that morning planning to be weird. It’s a place that tolerates and even encourages some kinds of weirdness. I thought more people would be okay with mine.

But it turns out that saying “I have a hole in my head” makes con-goers freak out just as much as it does normal people. It’s probably the surprise that does it. Here, then, is my all-purpose explanation for the mysterious medical condition I’ve been hinting about in this blog, phrased in FAQ form. I hope this entry will act as a reference when I’m too tired to explain yet again why I have X, Y, or Z wrong with me. It’s not that I mind explaining, most of the time; it’s just that I don’t want to bore everyone unnecessarily with multiple explanations. Fair warning—there are some icky details ahead. Now, to the questions …

Healthy fontanelles. I don't have these.
Source: Gray's Anatomy
Why do you have a hole in your head?
I was born with a semi-rare disorder called craniosynostosis (actually, it was called cephalic synostosis when I was born, and now it’s just CS for short). Normal babies have soft spots called fontanelles—squishy seams connecting the plates of their skulls—which enable their heads to change shape as they’re pushed through the birth canal and as their brains develop. In a normal infant, those seams harden by the third birthday; in an infant with CS, one or more of those seams will harden much earlier, perhaps before birth. And if your skull is the wrong shape for your brain when that happens, you’re screwed. I had just one seam harden—the one that controls the final width of my skull—and my mother tells me that my head actually came to a point in the back. The pain was so intense that I spent every waking moment screaming.

Until the late 1970s and early 1980s, babies born with CS usually died in horrible agony before they could start kindergarten. The lucky ones lived with severe brain damage and/or blindness due to the fact that their skulls didn’t play nice with their optic nerves. But around the time I was born, surgeons began experimenting with reshaping the skulls of young infants with CS. At the time, the disorder was poorly understood, and parents were told that the surgery was their children’s only chance of survival—and even then, it was a crapshoot. Some parents opted out. Mine didn’t.

When I was five months old, someone cut my skull open along the fused suture, from just behind my hairline to just above the nape of my neck. The doctors placed a plastic plate in the gap that would, in theory, make my head approximately the right shape to contain a normal human brain. But they screwed something up. According to one family story, they used a plate that was too small to fill the gap; according to another, they put it in the wrong place; a third story claims that it just slid around after they closed up. Whatever the real story is (the records of the surgery were lost years ago), my skull is part bone, part plastic, and part nothing; there’s a place where the plate stops and my skull does not begin. It’s a dent in my head, about the size of a quarter at the top and a dime at the bottom, and when I tap on it there’s a muffled thoomp-thoomp that echoes inside my head, like a drumbeat.

Why can’t I see the hole in your head?
Because it’s under my scalp, which is under my hair. You can’t see the scar from the surgery, either; when I was a kid I used to part my hair along it, because it was easy and no hair grew in that spot, but the exposed scar tissue would sunburn, crack, and bleed, which would really freak people out. I now style my hair to cover the scar and the hole, so the only visual evidence left is the white hair that started growing out of the scar when I was in college. If you see glimmers of silver in my hair in photographs, it’s not because I’m old, or prematurely gray; it’s because I’m too lazy to dye each white hair individually back to my natural color.

Can I feel the hole?
Can you? Probably, if I let you. Will I let you? Probably not. While I sometimes allow people to gently touch the spot, I insist on guiding their hands so they don’t press too hard, and I long ago started insisting that I get to touch their heads afterward in trade (you have no idea how freaky your normal round heads feel to someone who’s lived her whole life with something different, and I’m just as intrigued as you are). Kids are usually curious enough that they’re okay with that deal, and they’re very gentle; adults are weirded out by all the touching, and they’re less gentle. Thus, very few adults get to touch my head. For what it’s worth, though, everyone who is allowed to touch the hole notices it immediately; it really is there, obvious to the fingers of the casual observer.

Does it hurt?
Not much, and not anymore. The bleeding scar hurt when I was a child, but not so much that I wouldn’t scratch the scabs. It’s possible that my migraine headaches are related to this (just as it’s possible that my vision problems in late childhood and my fifty-plus ear infections before the age of five had something to do with a misaligned skull), but there’s no way of knowing. I am part of the first generation of adult CS survivors; they’re still studying us, when there’s funding for it, and either way nobody knows exactly how CS will affect our lives in the future. On the plus side, I can cure a headache by putting something cold on top of the hole, so if you ever see me walking around with a frosty can of Coke on my head, be nice and use your indoor voice, because I’m probably fighting a migraine.

Does the hole in your head make you … (smarter, dumber, prone to seizures, etc.)?
I don’t have seizures or obvious neurological symptoms, but there’s no way to tell whether the shape of my skull is affecting my brain functions in some subtle way. I have an IQ that’s been measured at just north of the genius line, but so do most of my relatives, including one sibling who has very mild CS symptoms (never treated) and one who shows no symptoms whatsoever. My intelligence is considered below average for my family, though, so some people think I might really have mild brain damage. (I tell the kids in my writing classes that I’m a “dumb genius”.) My schoolmates used to complain that the hole in my head somehow made me smarter, which gave me an unfair advantage in classes, but I don’t put much stock in the scientific theories of third-graders.

Are you going to have surgery to correct it?
I have no such plans. It would be painful and expensive, and there’s no way of knowing whether it would do me any good. Like most people, I try to avoid unnecessary neurosurgery. My condition has been pretty stable for more than 20 years; I don’t want to screw it up.

Is this going to affect your long-term health?
There’s no way of knowing. Scientists are still studying CS, and there are so many forms of it that they probably won’t find any answers to my case in my lifetime. Right now they’re pretty sure that the disorder is genetic, but they’ve only identified the genes responsible for about 10% of known cases. The answer to almost every question about CS itself is “we just don’t know.”

Is it dangerous?
Yes and no. I have a hole in my head where humans are supposed to have armor protecting their brains; that’s never a good thing. A blow to the wrong part of my head could be fatal—I’d be dead before I hit the ground—but it’s not like I’m made of glass. The rest of me is fine. I just have to be careful when I’m around anything that might bop me on the head. Which leads me to …

So why do you have a coyote on your head?
Because of you normal people! Normal humans live their lives with a bony layer of protection around their brains; they don’t think to watch out for people who don’t. In my everyday life, I have to be careful of open cupboard doors and books falling off high shelves. I wore a hardhat last time I helped a friend with home renovations (there were bits of wood and metal flying). Most of the time, though, I just pay close attention to my surroundings and I’m fine.

But conventions are different. I’m in a huge crowd of people, many of them taller than I am and not looking where they’re going, many of them wearing costumes with huge artificial wings or spiky armor or giant anime swords slung over their shoulders. There are approximately one zillion ridiculous ways I could die in a typical convention crowd, and I can’t very well demand that 125,000 people stop flying their freak flags just because it might kill me. At a certain point, I have to either live my life in a bubble or accept that I might die in a stupid accident. Carrying a bean-bag toy on my head splits the difference.

It works like this: because of the shape of my skull and my slightly wavy hair, I have an unusually easy time balancing objects on my head. Bean bags are especially skull-friendly. I long ago got into the habit of temporarily storing objects on my head when I needed my hands free, which is how I discovered Pocket Coyote’s effect when he rides around up there. He looks a little weird up on top of my head, which draws just enough attention to make me visible. A typical con-goer is not going to hit me in the head by accident if Pocket Coyote’s riding cranial shotgun; they’ll worry too much about knocking off part of my “costume”. If I do get bonked on the head, Pocket Coyote takes most of the impact, and in a worst-case scenario falls off. I say something to the effect of “Oh, no! My navigator!” and the offending person turns around, realizes what’s happened, feels just a bit guilty, and is more careful in the future. The best part about this is that nobody has to know they almost gave me brain damage. It’s not a perfect solution, but it works well in environments where people have a sense of humor about whimsical headgear … and luckily for me, those environments also happen to be where people are most likely to brain me with a papier-mâché zanbatou.

So … is your life different because of this?
How would I know? What would I compare it to? I don’t remember a time before it. But there are some obvious differences—having to watch out for cupboard doors, for example, and having to explain to self-defense instructors that I need to wear protective gear when we’re practicing head shots.

Probably the most important difference, though, is the perspective I’ve gained from being the only known land-dwelling mammal with a blowhole. I have a medical condition that could kill me stone dead in the next 30 seconds or let me live to be a hundred years old. Growing up with that knowledge forced me to focus on what was really important in my life, and to make my peace with incompletion. I went to school because I loved it and because it was necessary for the foundation of a career, but I also acknowledged that I might not live to graduate. I finally decided that I was okay with dying in the middle of my education, if that happened, because the education itself was worth part of my life, whether I finished it or not. I wouldn’t consider that a waste of a life, because the intrinsic value was there, with or without the diploma.

Besides, I couldn’t avoid making long-term plans just because I might not live to see them through; I just had to make plans that would create a life worth living, no matter how long or short it was. Of course, anyone on earth could say the same—any one of us could die at any moment by accident, violence, or disease. It’s just that most of us don’t think about it very often. The hole in my head makes me think.

In some ways, I write stories because I have a hole in my head. A good book lives on long after its author is dead, so writing gives me a fighting chance at the longevity others take for granted. If I write a good story at age 30 and die the day it’s published, the book can speak for me for years to come. It helps me make peace with incompletion.

More importantly, though, telling stories is the single most worthwhile thing I can think of to do with whatever time I have. I was born with precious few advantages in life—hell, I didn’t even have a functioning cranium—but I’ve always had a head stuffed with stories. If you believe that people are made for certain purposes, that form follows function, then my function probably has something to do with storytelling, somehow. Stories let me share joy and sorrow, wisdom and folly, pain and perseverance. Stories change lives, raise dreams, build and topple empires. Maybe no story of mine will ever rise to that level—but if I live my life in trying, I can die content. It’s the quest that matters to me. I’ve got that little spring inside me that never seems to wind down, and it says: keep telling stories, whether people read them or not. So I keep practicing, keep writing, keep trying. And every once in a while, I write something that comes to life, that says something true, that reminds me why I’m doing this … for however long I can do this.

The hole in my head makes me think about what’s really worth my life. Right now and for the foreseeable future, that’s writing. So if you’re at a con someday and see a woman with silver threads in her hair and a bean-bag coyote on her head, say hi to us both.

And then maybe take a moment to think about what you’d do with a hole in your skull. You never know where the answer will take you … 

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