May 31, 2006

Well, that was a fun ride.

Holy crap
Originally uploaded by Citizen Rob.
You can say whatever you like about me (and I'm sure you already feel free to do so), but one thing is undeniable.

When I have a blowout, I do not screw around.

May 30, 2006

Phone conversation with Schuyler, just now.

Wild flowers
Originally uploaded by Citizen Rob.
Me: Did you have a good time today?

Her: Yeah!

Me: Were you a good girl?

Her: Yeah.

Me: Did you play?

Her: Yeah.

Me: Did you go swimming?

Her: Yeah.

Me: Did you eat bugs?

Her: (with an exasperated sigh) Noooooo...


Schuyler in B&W
Originally uploaded by Citizen Rob.
Schuyler starts her summer camp program today.

I hate turning her over to other people. A while back, I wrote about my secret dream, which was for us all to move to an island somewhere and be together without all the fears and pitfalls of a cruel society. It wasn't a healthy dream, I admitted as such at the time. On days like today, however, when Schuyler walks into another new situation armed only with her tough girl disposition and her Big Box of Words, my stomach ties in tight knots with all the old fears. That island sounded pretty good to me this morning.

A friend of mine recently found out that the teachers at her five year-old daughter's private school were singling out her kid for special treatment. It's not my kid, so I won't get into the specifics, but let's just say that I was a little surprised to learn that these teachers were adopting the Lord of the Flies educational model. A shame circle? WTF?

The details aren't important. What is relevant about this story is that the teachers apparently counted on the kids to keep the situation a secret, and for a long time, they succeeded through the use of that time-honored teaching tool, embarrassment. My friend didn't find out from her daughter, who was humiliated by the experience and was keeping it to herself, but from other parents where were hearing bits and pieces of the story from their kids.

The reason this story upset me so much, aside from the fact that in general, I'm not in favor of little kids being humiliated, is that this happened to a little girl who can speak. This happened to a little girl who loves to talk. I think you can see where this is going.

We're in a delicate place with Schuyler. A year ago, she was just beginning to use her device and was still spending all her time in a heavily (if incompetently) supervised special needs program. In a year or two from now, she will hopefully be proficient enough with her device that she will be able to accurately communicate to us if things go wrong and no one's around to stop it.

But right now, it's hard. Schuyler's spending more and more time in mainstream programs, and this summer, she'll be spending the better part of every day surrounded by neuro-typical kids. Neuro-typical North Dallas kids, many of whom will presumedly grow into North Dallas teenagers like the ones who recently had drug-infused muffins delivered to a local rival school's teachers and made a bunch of them sick.

She's still learning how to use her device, and communicating detailed incidents is still very difficult for her. We depend on her teachers and her after-school program staff to tell us when something happens, but we can all remember how often grown-ups got it wrong, and how important it was for someone to take us seriously when we needed to tell our side of the story.

Schuyler needs to be able to tell her side.

Julie came home from dropping Schuyler off this morning, and she was in tears. Nothing bad happened; Schuyler was nervous and hesitant at first, but then she saw some kids she recognized and was off in a flash. This is summer camp; she'll be outside almost the whole time, playing and swimming and getting dirty and eating bugs and generally being a kid during the summertime. Today wasn't a bad start at all.

But Julie was scared, like I'm scared. She'd like the island, too, but she sees better than I do that Schuyler would hate the island. Schuyer would swim to the next island when no one was looking and go play with the headhunter kids.

As much as I turn into Barbarian Dad when the world pushes Schuyler around, Julie is just as sensitive. But more than that, she's dedicated to the idea, as I am, that Schuyler's world shouldn't be so fucked up. The monster shouldn't be calling as many of the shots as it still is.

"I just want her to have fun like any other kid," Julie said through her tears. "I want her to be able to go swim and play and have fun like I always did when I was a little girl. I hate her stupid device sometimes. I don't want her to be different."

When things are going badly for Schuyler, it's hard to be her parent. But the thing is, sometimes it's hard when nothing's wrong, too.

May 29, 2006

Memorial Day 2006

Nevinson, "Paths of Glory"
Originally uploaded by Citizen Rob.
For 14 hours yesterday I was at work -- teaching Christ to lift his cross by numbers, and how to adjust his crown; and not to imagine he thirst till after the last halt; I attended his Supper to see that there were no complaints; and inspected his feet to see that they should be worthy of the nails. I see to it that he is dumb and stands to attention before his accusers. With a piece of silver I buy him every day, and with maps I make him familiar with the topography of Golgotha.

Wilfred Owen, 1918 letter to Osbert Stilwell


Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."

Abraham Lincoln


What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?

Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"


O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.

Mark Twain, "The War Prayer"


Only the dead have seen the end of war


May 28, 2006

BBoW Report

Originally uploaded by Citizen Rob.
(A lot of people have been curious about the Big Box of Words, so maybe I'll make this a regular feature.)

Today at lunch, Schuyler grasped, using her device, two concepts that I hadn't really thought about but which I'd suspect are tricky for little kids. She spelled all these things out on the BBoW, and she pointed to Julie and me and herself to indicate who she was talking about.

So here's what Schuyler told us on her device today.

1) Her name is not just Schuyler, but Schuyler Hudson. She understands that both names refer to herself, and she taught herself how to spell it by looking at her medical alert dogtags.

2) My name is not just Daddy, but also Rob, and Mommy is Julie, too. I told her she could call us whatever she wanted (a position I've always taken, liberal hippie freakshow that I am), but she's going to stick with Mommy and Daddy for now.

She had her Barbie mermaid with her, and when we asked her what the doll's name was, she looked on the toy itself for clues. She found one and started typing happily on the BBoW, relieved to dodge the pressure of coming up with something by herself.

As a result, apparently her Barbie's name is Mattel. Nice to meet you.

Monster Girl

Monster Girl
Originally uploaded by Citizen Rob.
Schuyler and I were hanging out the other day, eating some cheese and watching television, and we stumbled across a Godzilla movie.

Schuyler loves monsters, and she loves dinosaurs. Godzilla is both. She was in a state of absolute joy.

The funny thing about this movie was that it was a fairly recent one, from 2001, but it took me a while to realize that. I mean, 2001 was just a few years ago; Peter Jackson's amazing effects for The Lord of the Rings were already in theaters, and yet Japanese Godzilla movies looked as cheap and crappy as ever. Some of the effects were passable, such as his atomic halitosis, but by and large it was still a guy in a big fat rubber suit, stomping around a tiny Japanese city like the Grimace. His face looked a little better, not so much like the Cookie Monster as past incarnations, but not much. I was actually charmed at how the Japanese must have a sort of fondness for bad Godzilla effects. Clearly, they could make a better looking monster, and choose not to.

Anyway, he was good enough for Schuyler. When Julie got home from work, Schuyler told her she saw a dinosaur on her device and then "raar"-ed around the apartment for the rest of the evening.

This is pretty representative of the kind of weekend Schuyler and I had together while Julie worked. I've talked about it before, but we have a vibe together that's unique to the time we're alone. When anyone else is around, Schuyler deals with the usual six year-old complicated social dynamics. But in our own ways we are broken, she and I, and so we give each other a break.

One thing I've never mentioned here, at least that I don't recall, is that Schuyler sleeps like the dead. At an early age, she started sleeping regular hours, and she goes to bed willingly, with a laugh, a story or two and a big sloppy kiss. Once she's out, that's it. She won't wake up until she's ready. If I get a late night phone call and I don't want to disturb Julie (who is a very light sleeper), I will actually take the call in Schuyler's room, while she sleeps. She never so much as stirs.

With this in mind, and the fact that I do my best writing when there aren't any distractions and haven't been getting all that much in the way of quality time with the book, we are considering getting Schuyler some kind of loft bed and putting a little writing desk underneath it for me. We'd share the space, and I'd spend late nights writing her book while she slept above me. It seems to make a perfect kind of sense.

I wonder sometimes if she and I would be as close as we are, as weirdly in sync, if it weren't for her monster. If she were a normal child, if I didn't have to listen and watch so closely and so patiently to understand what she was saying, would I love her as deeply as I do? Would she love me with the same energy, with the same constancy, if she didn't have to work so hard to build her own world and share it with me? I don't know. A broken, beautiful, silent Schuyler is the only one I've ever known. I wouldn't know what to do with any other kind, and so I love her with everything I am.

Schuyler loves monsters, something I suppose she got from me. Unlike myself, however, she doesn't seem to mind her own monster too much.

It's too bad she's already in bed. Kung Fu Hustle is on, and she'd love the beautiful mute girl. That, and all the fancy ass kicking. She is my pretty ninja, after all.

May 26, 2006


If you've sent me an email in the past few days and haven't received a reply, please send it again. I have my email back up and running, but I couldn't save the messages I'd already received.

(Note to Stephanie in San Antonio: Your email was one of the very last I got before The Crash, so I didn't get a chance to say thank you. Send again, please!)

Still picking up the pieces here...

May 25, 2006

Death Takes an iBook on Holiday

Originally uploaded by Citizen Rob.
Well, my laptop's reprieve was apparently a temporary one, like that moment when the body twitches and you think it's still alive, but alas, it's just a last little bit of electricity in the brain stem.

I do believe the iBook is dead.

I backed up my book about a week ago, so the worst case scenario there is that I lost a few pages written since then. I lost some video and photo work I've been doing, but that was all backed up as well, so thanks to some inexplicably responsible behavior on my part, data loss shouldn't precipitate a great weeping in the land.

This may take a little time to sort out, though. Guess I'll actually go outside and see the sun this weekend. Stupid sun.

May 24, 2006

Ten Things

Hi there
Originally uploaded by Citizen Rob.
(Originally written for Diabetes Notes, but I thought I'd share.)

Here are some things I've learned from my three months as a diabetic.

1) Aspartame makes my blood sugar go all funky.

2) Splenda makes me feel (in the best possible way) like I'm cheating on my diet, and does not appear to make my blood sugar freak out or my liver turn to stone or my brain explode or whatever I keep reading is supposed to happen to me when I eat it.

3) Because of 1), I am sad to part ways with Diet Dr Pepper, alas. I mean, I'm saying goodbye to most diet drinks, but Diet Dr Pepper is the only one that did not taste like it was made with butt.

4) Because of 2), I am now entering into a beautiful long-term relationship with Diet 7-Up, Diet Big Red (which tastes VERY guilty, and probably not what you'd expect a grownup to drink), Sugar Free Jello Pudding (chocolate and the ever elusive vanilla, which I might actually push over an old person to get to if she was standing in front of the display at the grocery store) and Breyer's Carb Smart fake ice cream (but only chocolate; the other flavors are weird, like what an alien might come up with if he were trying to make ice cream back on Mars).

5) As long as I am on a double dose of Glucophage, I should probably stop scheduling important things in the morning. I need that time to sit and be an 80 year-old man for a while.

6) When buying a bicycle for exercise, getting a big heavy one-speed beach cruiser? Pretty fabulously stupid. I'm going to trade up to something practical.

7) When your bike is big and stupid and impractical and hurts to ride up hills? You tend to find excuses not to ride it.

8) When your ass starts expanding for seemingly no reason, see 7).

9) There are some people out there with some pretty strange ideas about diabetes. Every last one of them has a cure for you, if you'll just listen and follow their bizarre advice.

10) Man, I miss pasta.

May 21, 2006

"and the seeds falling softly from the branches of the trees..."

No comment.
Originally uploaded by Citizen Rob.
Things aren't always going to be like this.

One day, when things turn around and I can afford it, I am going to have a small piece of jewelry commissioned for Schuyler. I envision something like the work of Jeanine Payer, except within normal human price range. Perhaps I'll find an up-and-coming jewelry artist who'll take on the work one day.

The quote that I want for Schuyler is, perhaps predictably, from the lyrics to an Andrew Bird song (although actually, it's a cover of a Handsome Family song) called "Don't Be Scared". It seems to me to be about an imaginative child who, for whatever reason, lives in an internal world.

I have one of those children.

Whenever Paul thinks of rain, swallows fall in a wave and tap on his window with their beaks. Whenever Paul thinks of snow, soft winds blow round his head and his phone rings just once late at night-like a bird calling out, "Wake up, Paul. Don't be scared. Don't believe you're all alone." "Wake up, Paul," whisper clouds rolling by and the seeds falling softly from the branches of the trees.

Don't be scared. Don't believe you're all alone.

I want her to have those words for the rest of her life, always to remind her that she'll never be alone. I hope that's true, too.

May 19, 2006

Blast from the past

Schuyler and Julie, 2002
Originally uploaded by Citizen Rob.
(I tried to figure out how to embed this video in this post, but my brain went "Bzzzzt" fairly quickly.)

I was cleaning off an old drive and stumbled across this little Quicktime video of Schuyler during the summer of 2002, when she was about two and a half.

Good lord, she's grown a lot.

That was back before we knew about her monster, or how profoundly it was going to change her world (and ours) one short year later. It's weird, thinking back on that time.

Could be worse. Could be raining.

Shitstorm, by Luke Chueh
Originally uploaded by Citizen Rob.
So let me just put this out there.

I'm not having a swell week.

I had a blood sugar incident two days ago in which, despite doing everything the right way, my blood glucose level reached a dangerous level. Because of this, I have now had my daily dosage of Glucophage doubled. So far, this horse pill double whammy does not seem to have a very marked impact on my blood sugar, but it does leave me feeling nauseous and wiped out, like a puppet who has just gone from being animated and lively to being discarded in the toybox for the night.

My dental adventure has left us financially... anxious. I think that's a nice way to put it.

We're trying to find an affordable, non-thug-filled program for Schuyler for the summer, but those two criteria don't appear to cross paths very often in North Dallas. She might end up needing that shiv after all.

And Julie got so scared by my blood sugar incident that she cried. Hard. I think it's all starting to weigh down on her, too.

So yeah. Here's to next week.

Big Box of Words

Schuyler talks
Originally uploaded by Citizen Rob.
As promised, it's time for a little primer on Schuyler's Big Box of Words. ("Little" obviously being a relative term.)

The BBoW is actually a Prentke Romich Vantage Plus augmentative alternative communication device. The BBoW is smaller in screen area than a laptop but is in a heavy, durable plastic case that can deal with the kind of gentle, loving care that a six year-old is known for. It uses an interactive dynamic display that responds to touch, even when coated with mac and cheese. The device weighs about four pounds and has a clear cover (with lots of stickers) to protect its screen, as well as a shoulder strap. Because the screen is very bright and is in use for most of the day, the BBoW requires overnight recharging most evenings, after Schuyler goes to bed.

The BBoW is programmed using a communication language called Unity. It has an expandable vocabulary of about three thousand words and can be programmed to function at a number of different levels, from a remedial level for beginners and profoundly impaired kids to an advanced level suitable for adults. The system uses a combination of pictures and words to build sentences and give choices and ultimately teach language. Certain choices prompt the device to change the menu options to make communication easier and show the user how language works smoothly.

For example, if Schuyler wanted to say that she wants to have spaghetti for dinner, she would hit a button with a little girl on it for "I" (rather than ones for "you", "he", etc.) and then a little icon with a criminal in stripey clothes ("want"; get it?), followed by a button with the word "to" and then a button with a picture of an apple. As she does so, a screen at the top of the BBoW fills in the words as she selects them. "I want to eat..."

When she hits the apple button, the screen changes. The top row now shows a list of meal types. She selects "dinner" and it changes again, showing different types of dinner menus. She selects "Italian" and then, from the next screen, spaghetti. When she's got her sentence constructed, she touches the area at the top of the screen where the string of words has been forming, and the device speaks the sentence for her.

"I want to eat spaghetti."

The voice that speaks is computerized and sounds more or less like a child. One complaint that I have with the device is that even though I assume most of the people who use them are fairly young, there aren't that many child voices available, and so I think every kid in Schuyler's class sounds the same, using the "Kit" voice. Even among people using the same voice, however, there are programmable variations in pitch and variance and speed that can personalize the voice further. Our original PRC rep told me that she can tell which of her clients is calling her on the phone just from these settings.

Let's discuss Schuyler's school. On another blog, some swell anonymous person descended from the upper branches of the Assmonkey Forest long enough to suggest that we must have pulled a fast one on the world since we raised all that money to buy Schuyler a device when she attends a school district that will provide the devices for its students.

Two points about that. First of all, when Schuyler first began using the BBoW, we didn't live in North Dallas. We lived near Austin, and the small school district where Schuyler attended was unwilling to help purchase the device that we considered appropriate for Schuyler. They said she'd never be capable of using it. I'd like to say she proved them wrong when we moved to North Dallas and placed her in a proper learning environment, but she was using it far beyond what her school thought possible a few weeks after she started using it. We had no idea that the local schools had a program for device users at that time. (There were only four in the country, although I'll bet there are more now.) It was several months later that we found out about the program and decided to risk everything and move to North Dallas so that Schuyler could attend her Box Class. By the time she started in that class, she had already been using her BBoW for about four months.

Secondly, if we ever decide to leave North Dallas and the school district here, she won't lose her BBoW. That's unlikely, but not impossible; today I found out from a friend who works as a nanny here that one of her charges, a four year-old, was pulled from her pre-school class because other four and five year-olds were making death threats to her. Apparently that's not as rare as you might expect. North Dallas has a reputation for having the best schools in Texas, but it is also infamous in this state for having horrible, nasty children. The Box Class is supposed to be a three-year program, after which time Schuyler will hopefully be able to attend mostly mainstream classes. We'd like her to stay in the North Dallas schools, but not if she has to make a shiv in shop class just to protect herself. I thought all this consideration was far far in the future until I was told about these four year-old kids threatening to cut another kid's throat, "and not pretend". Seriously.

So Schuyler's device is her own. She takes it most places, either on her shoulder or in her backpack. (Or on the shoulder of one of her parents if she can scam us into carrying it for her.) She does not carry it on the playground or to the swimming pool, places like that where it could be damaged. She also doesn't use it in bright sunlight where the screen is impossible to read. She takes it almost everywhere but won't keep it out to use if we're at a movie, for example. She uses it to order her own food at restaurants, something we insist on now even though it makes some waiters and waitresses uncomfortable. Fuck 'em.

In addition to the picture- and word-guided sentence construction, Schuyler uses her device to practice her spelling, which she loves to do, and also numbers and math. She was showing off her addition skills the other night at dinner, for example. She sees words and spells them out on a section of the BBoW that gives her a screen with the alphabet on which she can spell whatever she likes. She loves spelling things out and will often use this page to say things that she can just as easily find pictures for on other parts of the device.

She explores on her device constantly. She found a page with body parts one day while we were all driving somewhere once. Nothing like hearing the word "penis" come floating up from the back seat out of nowhere. She also found the word "yikes" on the BBoW, which was sort of a random thing to hear her say. To her credit, she used it properly.

Someone left a comment once suggesting that we should refer to it as her "voice" or "words" rather than her device. Both we and Schuyler's teachers refer to the BBoW as Schuyler's device, not her voice. Schuyler uses several different forms of communication, including the BBoW, sign language and even some limited verbal communication, and she understands the difference between them all. No baby talk is required.

How smart is Schuyler? No one knows. It is almost impossible to measure the IQ of a non-verbal child, and even testing by a skilled pediatric psychiatrist is a very subjective affair that we don't feel compelled to put her through at this time. She is clearly behind other kids her age but in the year that she's had the device, she's made good progress. I am convinced that she is of normal intelligence, and as she finds her voice, she'll continue to catch up.

I also predict that she'll eventually learn to swear on the BBoW, probably sooner than her teachers will like. Well, I can dream my little dream.

May 17, 2006


A quick note to say that I have been featured once again over at the very cool Quirky Nomads, so if you'd like to hear me mutter my way through a blog entry (and really, why wouldn't you?), go give it a listen.

And I'd like to thank Sage for editing out the part where I said that my blog was "available online, which is where you'll find most blogs, I think". Although I'll always share my more idiotic moments with you fine folks.

May 15, 2006

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.

May 13, 2006

You have questions.

Friday afternoon
Originally uploaded by Citizen Rob.
Answers to your questions!

Okay -- my first question is I want to know more about those graphics from Luke Chueh that you keep using to illustrate -- perfectly -- the theme of a particular post.

Luke Chueh is a California artist whose work I absolutely love. He puts cute, melancholy characters in often macabre situations. And no, I don't actually have permission to use his images here, but one day I hope to make up for that by purchasing some of his art.

If you like it and want to spend some money, just let me know that I was responsible for you finding (and paying) him. It'll get my karma off the hook.


What is Julie's favorite TV show?

I know I give her a lot of shit about watching Gilmore Girls (and for good reason -- the show sucks), but without asking her, I'd have to say that it's probably a tossup between Lost and Grey's Anatomy, either of which I'd take over GG any time.

She also watches an odd show on Bravo about this rabbi who drives around helping extremely fucked up families find "shalom in the home". It's just weird enough to watch.


I'd like to hear more about Julie. Does she like to write? Does she have a blog? Maybe some guest entries.

Ha. She hates writing and refuses to contribute. Trust me, I've asked.

I've been toying with the idea of doing a podcast, and if I do, I'll make her get involved.


I would like to know if you're ever going to get a tuba. Also I would like to know what your favorite color is, if you have an accent, why the sky is blue, who makes you laugh, and is it faster to get the New York than by car.

I'd love a tuba, but man oh man, they're not cheap, even the used ones. My favorite color is yellow. I lost my Texas accent when I moved away in 1997 but I'm getting it back, I think. The sky is blue because if it was green, you wouldn't know when to stop mowing the grass. Schuyler makes me laugh; she's legitimately funny, like a grownup. If you're asking about professional comedians, I'd say people like David Cross, Jon Stewart and Ricky Gervais. The New York thing? I'm not quite sure what you're asking, so I'll say "No".


Are you and Julie going to have more babies cause the one you have now is pretty stinkin' awesome and cute???? We need more cool people in the world!

She is pretty awesome, and entirely unique. And that's part of the problem.

Schuyler's monster is almost certainly genetic. It's not entirely clear what the chances are of it recurring -- Yale said one in four, while the University of Chicago thinks it might be as low as seven percent -- but the risk is there, and there are no guarantees that the next time around would bring the same level of severity.

Schuyler's CBPS is not nearly as bad as a lot of kids, most of whom have some level of physical impairment and mental retardation that Schuyler does not have. A lot of them die.

So yeah. If it were a risk of having another child who in the worst case scenario is just like Schuyler, I don't know, we might consider it. But the worst case scenario is pretty bad. No thanks.


I want to know what happened with your eye and Buddy. What did Dr. Hottie say?

She said my eye is fine and that blood sugar fluctuations can cause flashes like that. She's also sending me to a team of ophthalmologists just to be sure. And she called me a young patient again. Oh yeah.


Why don't we hear more about Schuyler using her big box of words? Is it too complicated for her to use or is she just not that interested yet?

You're kidding, right?

May 11, 2006

I want a new drug.

Pharm-Life, by Luke Chueh
Originally uploaded by Citizen Rob.
After three month of trying to control my blood sugar and weight with diet and exercise, I had my follow-up appointment with Dr. Hottie.

"So, how are you doing?" she asked.

"Well, I'm fat and my blood sugar's too high," I said. "Other than that, I'm swell."

It was true. My blood sugar is down, but not enough, and I actually gained a little weight, which she said was normal. So we moved on to the next step, and that next step is a drug called Glucophage.

It's not a bad one. I don't have to inject anything into my stomach or get bitten by a Gila Monster, for example. It's just a big pill that I take once a day. Glucophage works in three ways. It reduces the amount of glucose produced by the liver, it reduces the amount of glucose absorbed from food through the stomach, and it improves the processing of the body’s naturally produced insulin to reduce the amount of glucose in the blood stream.

It doesn't seem to have many side effects, apart from fucking with my digestive system a little bit. A small number of people can react to it by developing a condition called lactic acidosis, and that can be fatal in about half the people who get it, usually patients with kidney or liver problems. So that's no fun. But so far, I live and breathe.

My eyes are fine, too. You know, aside from their usual state of nearsightedness.

The other thing that Dr. Hottie did was put me on something called the Zone diet. Okay, I admit, that was the day before yesterday, and all I've done so far is buy some of these Zone Perfect bars for my desk drawer at work. Baby steps, you know.

I don't have much else to report, actually. The person who was bitching in my comments about the quality of my writing since I took on my diabetes blog will no doubt be even less thrilled that I am also now writing for a literary blog with my friend Rhys. Yeah, I know. Guess I'll have to start reading now.

This entry might actually be slightly lamer than most, but honestly, I don't have a lot to say today. I'll tell you what. You ask me whatever you want, and perhaps I'll answer your questions in future entries. I promise not to lie unless my true answers are too boring. So get ready to be bullshat.

May 10, 2006

Living the lush life

Cavity, by Luke Chueh
Originally uploaded by Citizen Rob.
I just received a letter from my insurance carrier (whom I won't name, but their initials are MetLife) detailing the recent dental work I had done. It included this interesting line:

Local anasthesia is not a covered expense.

It wasn't a big deal, since in the big scheme of things it wasn't a huge expense. But it made me think, just how tough do they expect you to be, that anasthesia during a root canal is considered a luxury item?

I feel like such a little prince all of a sudden.

Talking about the weather

Angry clouds
Originally uploaded by Citizen Rob.
Little did I know when I took this photo that this storm was going to kill people.

Considering how close this storm was, we didn't actually see any of it at our place. After I took this photo, we sat outside and watched these huge thunderheads move in, towering overhead and flashing with lightening but never actually reaching our place. The winds whipped our clothes and blew the ducks around the pond, but the storm itself moved just north of us. What was a beautiful and awesome display for us was a profoundly crappy experience for the three people who died and the ten who were hospitalized.

We didn't think much of it at the time, beyond "Cool, big clouds!", even when the tornado warning flashed across the screen. It wasn't until we turned on the television this morning that we saw the images of debris and house foundations and the inevitable "It sounded like a hundred freight trains!" interviews.

This time of year in north Texas, weather warnings scoot across the screen almost every night. You quickly determine whether or not your house is going to get sucked up or your car flattened by hail, and then you go back to your "What Not to Wear" or whatever. It doesn't necessarily occur to you that somewhere just up the road, someone else's home and life is getting ripped apart.

Makes you think.

May 7, 2006

Hero worship

The Beast
Originally uploaded by Citizen Rob.
So, would you like to know how to make Schuyler's head explode?

Take her to see King Kong for real.

May 6, 2006

I don't care if I never get back.

Schuyler boos.
Originally uploaded by Citizen Rob.
We took Schuyler to her first baseball game last night.

We sat in the cheap seats, ate lots of nasty ballpark food, got Schuyler her very own Texas Rangers ballcap (in purple, of course), and had a lot of fun. The Rangers lost by one run, but only after coming back from a seven run gap in a single inning. It was a good game and we had a great time, which we were all definitely due.

Most importantly, however, we took the opportunity to teach Schuyler a very important skill, one that she will be able to use anywhere in the world. It was a skill she took to instantly, too.

She learned to boo the Yankees.

May 5, 2006

Buddy & Me

Twinkie, by Luke Chueh
Originally uploaded by Citizen Rob.
Years ago, I wrote that if I ever got a tumor, I'd call it Buddy and rename my journal "Buddy & Me".

Well, I think Buddy is here. And he's a ghost. In my eye.

In my right eye, to be precise. For about four hours today, I could see a little flickering ghostly blob, just off from the center of my field of vision. It was this shimmery little thing, metallic gold in color, and it just sort of hung out. It was very defined and present, and aside from being a little distracting while I drove, it didn't cause me any discomfort. It was like a tiny little "check engine" light going off, except of course it was warning me that my head was about to explode.

I have no idea what Buddy the Eyeball Ghost was, or if he'll be back. I don't know if he was a result of the Beedies, or some new fun way that my body is betraying me. I have an appointment with Dr, Hottie next week, so perhaps she'll be bale to shed some light on Buddy and his mission in my eyeball.

So there you go. All you armchair doctors can go nuts telling me what sort of hideous eyeball tumor I've got now. Just remember, his name is Buddy. Buddy the Eyeball Ghost.

May 4, 2006


Originally uploaded by Citizen Rob.
Over at Diabetes Notes, I'm joining the rest of the Science & Health blogs on in talking about smoking issues today.

I'd like to pretend that I'm telling you this so you can go over and see what everyone has to say and maybe learn a little something to help you become a healthier person.

But really, I just wanted to use this graphic created by the CDC. It makes me stupid happy.

May 2, 2006

What I'm Listening to Tonight

Tables and Chairs by Andrew Bird

If we can call them friends we can call them on red telephones
and they won't pretend that they're too busy or they're not alone.
If we can call them friends we can call,
holler at 'em down these hallowed halls,
but we can't let the human factor fail to be a factor at all.

Don't, don't you worry
about the atmosphere
or any sudden pressure change.

'Cause I know
that it's starting
to get warm in here
and things are
starting to get strange.

And did you
did you see how
all our friends were there
drinkin' roses from the can?

How, how I wish I
I had talked to them
and wished they
fit into the plan.

And we were tired of being mild.
We were so tired of being mild.
And we were tired.

I know we're gonna meet someday in the crumbled financial institutions of this land.
There will be tables and chairs,
there'll be pony rides and dancing bears,
there'll even be a band.
'Cause listen after the fall there'll be no more countries
no currencies at all.
We're gonna live on our wits
gonna throw away survival kits
trade butterfly knives for adderal.
And that's not all.
There will be snacks, there will
there will be snacks!

And we were tired of being mild.
We were so tired of being mild.
And we were so tired.

So don't you, don't you worry
about the atmosphere.

May 1, 2006

My rapidly expanding ego will soon eat your town.

Originally uploaded by Inkygirl.
And as if that last thing from Jen wasn't cool enough, check out this very nice entry by one of my favorite artists, Debbie Ohi. Look at that, it's me! I've been drawn by a few people in my lifetime (and I'm not just talking about on the bathroom wall in high school), but I think it's safe to say that this is my favorite.

Here's the part that makes me the happiest. Like Jen and her wonderful gift yesterday, Debbie didn't tell me she was doing this, or even that she'd done it. I was wandering through my flickr contacts and saw that she'd posted a new entry in her Little Nightmares series. I love this series; one day I am going to buy as many prints from it as I can. (This is my favorite so far.) As I was looking at it, I glanced at the little Previous Photo window.

"Hey, that's me!" thought me.

And then I followed the link and the rest is history. Or, you know, a blog entry, anyway.