October 31, 2006
I looked over at her and asked, "Are you excited about Halloween?"
"Yeah," she said, not looking away from her show.
"Are you looking forward to being a witch?"
"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.
"Tell me, Schuyler, are you a good witch or a bad witch?"
She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.
Well. There you go.
Originally uploaded by Citizen Rob.
Those of you living in the New York City area might be wondering to yourselves, "Say, I wonder what I'm going to be doing on the evening of Monday, December 11? Surely there's some way I can spend, say, twenty bucks or so and be both informed and amused!"
From Blogger to Author: How Bloggers Got Book Deals, and What Happened Next
Monday, December 11, 7-9 pm
Small Press Center
20 West 44th Street
New York, NY 10036
I had no idea that Jessica "Washingtonienne" Cutler is going to be one of the speakers. I'm going to have to try extra hard to be interesting now. "Yeah yeah yeah, crazy sexual exploits in the halls of power are interesting, I suppose, but what we REALLY want to hear about is the Big Box of Words!"
Don't worry. I'll make stuff up if I have to. For twenty bucks, you deserve some zazz.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
October 30, 2006
But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.
We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.
I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.
But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.
The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.
We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.
Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)
You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.
Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.
But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."
Halloween is her day to just be a kid.
As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.
October 28, 2006
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
October 26, 2006
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
October 21, 2006
On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.
On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.
Stalkers, sharpen your knives and make your plans.
October 16, 2006
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
October 9, 2006
Originally uploaded by Citizen Rob.
I ran across this while researching something for my book, and it resonated so strongly with me that I wanted to share it.
I don't always think people understand why Schuyler's situation makes me so sad sometimes. I'm not always sure I understand it myself.
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
-- The Impact of Childhood Disability: The Parent's Struggle, by Ken Moses, Ph.D.
October 6, 2006
Originally uploaded by Citizen Rob.
Typically, when I write a blog entry, I start with the topic and go from there. When I'm done writing, I'll go find a photo that will go with it, or I'll take one if I need one. Or perhaps I'll steal one from someone else's page, maybe yours! The point is, usually the photo comes last, as an accompaniment to the writing.
This morning as I was leaving for work, Schuyler was drawing with her big markers, wearing her little ballerina outfit that she inexplicably puts on when she's playing around the apartment. I have no idea what the appeal might be, particularly since she doesn't really dance around much when she wears it. Anyway, she was drawing quietly with her markers, and I thought it was cute so I took a few photos on my way out the door.
It wasn't until later, after I loaded the photos into my computer, that I saw what I had captured, and knew that I wanted to write about it.
Anyone who has ever met Schuyler and spent any time with her knows how sociable she is. She is outgoing and friendly and not one bit shy. It's almost scary sometimes, how warm and happy and turned-up-to-eleven she can be.
But Schuyler lives most of her life inside her head. It's not so pervasive as it was when she was younger. She can make herself more clearly understood now, she has options she didn't have before. But she only makes those connections when it suits her, and much of the time, it doesn't.
Strangely, this is a side of Schuyler that I understand completely. When she disappears inside her own head like she's doing in that photo, I get it. It's not because of her monster, not entirely. I think she retreats there because it's a place where she makes sense. Schuyler is a social creature, but she is also a very internal one, a person who can be totally alone in a crowded room. I watch her withdraw, not out of sadness or anger or stress, but simply because that's where she lives, inside herself. And I get it, because it's where I live, too.
Tomorrow, she and I will spend the day at home together, and I know that like on most days we have, we'll spend part of it just sitting together. She'll draw or play with her dolls, making them speak to each other in her strange moonman language (she never uses her device to make them talk; she tried that early on, making her dinosaurs say "I love you" to each other, but that didn't last) while I write. We'll do that for hours, and we'll never say a word, and it'll be perfect.
I guess I like that shot because I take a lot of photos of Schuyler that show the vibrant part of her personality, but I feel like a real photographer when I take one that shows her where she lives, inside that strange and broken and beautiful head.
October 4, 2006
Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.
Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.
I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.
Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.
So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.
Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.
But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."