(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.
May 19, 2006
Could be worse. Could be raining.
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.
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
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.
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
Podzilla
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.
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
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.
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.
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?
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.
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.
"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
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.
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
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.
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
So, would you like to know how to make Schuyler's head explode?
Take her to see King Kong for real.
Take her to see King Kong for real.
May 6, 2006
I don't care if I never get back.
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.
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
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.
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
Butthead
Over at Diabetes Notes, I'm joining the rest of the Science & Health blogs on b5media.com 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.
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.
Woah!
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.
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.
Woah!
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.
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.
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.
April 30, 2006
Artsy Fartsy
Do you want to know why the internet is cool? Do you?
I got an amazing gift in the mail today, from my friend Jen. She had it drawn by her brother Tom Owens, an animator and storyboard artist at Dreamworks. I had no idea what she was up to until it arrived. I'm hanging it in my office tomorrow. I only regret that I don't have a scanner large enough to properly share it with you.
What an awesome way to start the week. Beats the crap out of last week.
I got an amazing gift in the mail today, from my friend Jen. She had it drawn by her brother Tom Owens, an animator and storyboard artist at Dreamworks. I had no idea what she was up to until it arrived. I'm hanging it in my office tomorrow. I only regret that I don't have a scanner large enough to properly share it with you.
What an awesome way to start the week. Beats the crap out of last week.
Sunday afternoon, and a question.
I took a break from a problematic video project today and spent the afternoon bike riding with Schuyler. We rode to lunch, had crappy fast food while listening to cheesy 80s music ("She blinded me with science!"), and explored the neighborhood for a few hours. It was the best time we've had a a long, long time.
The biggest change in Schuyler these days, as evidenced by my last entry, is her level of comprehension of the things we tell her and the world around her. We always knew it was there to some extent, but lately it's been possible to converse with her more than ever before.
While we were eating, she got very mellow and cuddled up next to me like she does sometimes. She gets weirdly focused and serious when she's like this, and it's then, with our faces close to each other, that we talk.
I don't know why I never asked her before.
"Do you ever wish you could talk?"
She looked at me for a moment. "Yeah," she said with only a touch of sadness. It's one of her handful of words she can speak fairly clearly. Well, clearly to us, anyway.
But then she thought about it and changed her mind. "No," she said, and smiled. She's got new teeth coming in, so her smile isn't as gummy as it's been lately.
"You don't want to talk?" I asked.
"Huh uh."
"Really?"
"Noooooooo," she said with a little smile and an eye roll, as if it was a silly question.
"You getting along okay like this?"
"Yeah!" she said with a laugh, and that was it. The serious talky window was closed and we were back to play time.
Which was perfectly fine with me. I liked the answer I got.
The biggest change in Schuyler these days, as evidenced by my last entry, is her level of comprehension of the things we tell her and the world around her. We always knew it was there to some extent, but lately it's been possible to converse with her more than ever before.
While we were eating, she got very mellow and cuddled up next to me like she does sometimes. She gets weirdly focused and serious when she's like this, and it's then, with our faces close to each other, that we talk.
I don't know why I never asked her before.
"Do you ever wish you could talk?"
She looked at me for a moment. "Yeah," she said with only a touch of sadness. It's one of her handful of words she can speak fairly clearly. Well, clearly to us, anyway.
But then she thought about it and changed her mind. "No," she said, and smiled. She's got new teeth coming in, so her smile isn't as gummy as it's been lately.
"You don't want to talk?" I asked.
"Huh uh."
"Really?"
"Noooooooo," she said with a little smile and an eye roll, as if it was a silly question.
"You getting along okay like this?"
"Yeah!" she said with a laugh, and that was it. The serious talky window was closed and we were back to play time.
Which was perfectly fine with me. I liked the answer I got.
Kelly
Two things of note this weekend, both of them accomplishments by the ladies of the house. Don't look at me like I'm going to do something equally cool. It's the weekend, man. If I even shave, it's a miracle. (And I didn't.)
First of all, congratulations are in order for Julie, who got a big promotion at The Monolith yesterday. Every time we move, she transfers with the company, which is one of the cool things about working for a big corporate monster like The Monolith, but she always ends up having to take a different position, depending on what's available. Well, as of today, she's back on the management team, in her old position as the store's Community Relations Manager. How weird is is that she and I are both doing the same thing in our respective places of employment? We are Ministers of Propaganda. Say what you will about this household, but it is definitely NOT a no-spin zone.
The other thing that happened yesterday involves Schuyler. I bought her a Cabbage Patch Doll, partly because she's been a very good little girl for quite some time without much in the way of reward and partly to distract her from the Mermaid Barbie that she had become fixated on in the store, despite its near-identical appearance to the Mermaid Barbie she already owned. Her sudden interest in a fat-headed, buck-toothed ugly doll seemed like a healthy improvement over her fixation on perfect, big-boobied Barbie.
She brought her Cabbage Patch Doll home, and I told her that she'd have to name it. This was a reach, and perhaps an unnecessary one since in addition to having the designer's name printed on their asses (no, really, I didn't believe it until Julie told me and had the doll moon me), Cabbage Patch Dolls come with names and birth certificates. Where's the fun in that? That would be like giving birth a baby and not being allowed to name it. (Not to mention someone's name tattooed on its ass.)
I had no idea what she would do, but I told her to get her device and tell me her doll's name. After she considered it for a few moments, she started deliberately typing on her Big Box of Words.
And that's how we learned that her new friend's name is Kelly.
Now here's the thing about that. Schuyler doesn't, to my knowledge, know anyone named Kelly, although she obviously heard the name somewhere. She certainly doesn't have any friends named Kelly. But she knew that was her doll's name, and more importantly, she knew how to spell it. She got it wrong at first, and then she figured out what she got wrong and fixed it.
What this means is that Schuyler understands the functions of letters well enough to work out how to spell a word that she wants to say. It also means that she grasps the basic rules of spelling, and therefore reading. AND, it means that she understands the relatively abstract concept of arbitrarily selecting a name for an inanimate object that represents a living being.
Which might not impress you if you've got your own little neurotypical wonderchild at home. But reading and spelling and abstractions are not easy for a nonverbal child. Stop for a moment and ask yourself how you would teach a mute child to read. Imagine that you could never get any kind of feedback, no repetitions of the things, no reading out loud to confirm that the things you are trying to teach are taking hold. You just read and provide tools like the BBoW and hope and pray for a sign that it's taking root inside a unique and broken brain whose workings have already baffled the world's leading expert on her monster.
So yeah. We're extremely proud of her. I am more convinced than ever that she's going to confound and exceed the world's expectations. I'm counting on her to write the rebuttal to my book one day.
First of all, congratulations are in order for Julie, who got a big promotion at The Monolith yesterday. Every time we move, she transfers with the company, which is one of the cool things about working for a big corporate monster like The Monolith, but she always ends up having to take a different position, depending on what's available. Well, as of today, she's back on the management team, in her old position as the store's Community Relations Manager. How weird is is that she and I are both doing the same thing in our respective places of employment? We are Ministers of Propaganda. Say what you will about this household, but it is definitely NOT a no-spin zone.
The other thing that happened yesterday involves Schuyler. I bought her a Cabbage Patch Doll, partly because she's been a very good little girl for quite some time without much in the way of reward and partly to distract her from the Mermaid Barbie that she had become fixated on in the store, despite its near-identical appearance to the Mermaid Barbie she already owned. Her sudden interest in a fat-headed, buck-toothed ugly doll seemed like a healthy improvement over her fixation on perfect, big-boobied Barbie.
She brought her Cabbage Patch Doll home, and I told her that she'd have to name it. This was a reach, and perhaps an unnecessary one since in addition to having the designer's name printed on their asses (no, really, I didn't believe it until Julie told me and had the doll moon me), Cabbage Patch Dolls come with names and birth certificates. Where's the fun in that? That would be like giving birth a baby and not being allowed to name it. (Not to mention someone's name tattooed on its ass.)
I had no idea what she would do, but I told her to get her device and tell me her doll's name. After she considered it for a few moments, she started deliberately typing on her Big Box of Words.
And that's how we learned that her new friend's name is Kelly.
Now here's the thing about that. Schuyler doesn't, to my knowledge, know anyone named Kelly, although she obviously heard the name somewhere. She certainly doesn't have any friends named Kelly. But she knew that was her doll's name, and more importantly, she knew how to spell it. She got it wrong at first, and then she figured out what she got wrong and fixed it.
What this means is that Schuyler understands the functions of letters well enough to work out how to spell a word that she wants to say. It also means that she grasps the basic rules of spelling, and therefore reading. AND, it means that she understands the relatively abstract concept of arbitrarily selecting a name for an inanimate object that represents a living being.
Which might not impress you if you've got your own little neurotypical wonderchild at home. But reading and spelling and abstractions are not easy for a nonverbal child. Stop for a moment and ask yourself how you would teach a mute child to read. Imagine that you could never get any kind of feedback, no repetitions of the things, no reading out loud to confirm that the things you are trying to teach are taking hold. You just read and provide tools like the BBoW and hope and pray for a sign that it's taking root inside a unique and broken brain whose workings have already baffled the world's leading expert on her monster.
So yeah. We're extremely proud of her. I am more convinced than ever that she's going to confound and exceed the world's expectations. I'm counting on her to write the rebuttal to my book one day.
April 26, 2006
Listen
"A sober friend once said to me, 'When I was still drinking, I was a sedated monster. After I got sober, I was just a monster.' He told me about his monster. His sounded just like mine without quite so much mascara. When people shine a little light on their monster, we find out how similar most of our monsters are. The secrecy, the obfuscation, the fact that these monsters can only be hinted at, gives us the sense that they must be very bad indeed. But when people let their monsters out for a little onstage interview, it turns out that we've all done or thought the same things, that this is our lot, our condition. We don't end up with a brand on our forehead. Instead, we compare notes."
--Anne Lamott, Bird by Bird
--Anne Lamott, Bird by Bird
April 25, 2006
A break in the trainwrecky goodness
Because I am every bit as sick of writing about my teeth as you are of reading about them, and because I don't particularly feel like taking on any of the other things currently making me crazy, I thought I'd share something positive that I'm looking forward to. I'm taking those lemons and making some lemonade, by golly. If I have any left over, perhaps I'll squish them in someone's eye.
Tomorrow after work, I'm going to try to go see a book signing by Anne Lamott.
I've always been a big fan of Anne Lamott. Her book on writing, Bird by Bird, had helped me immeasurably, and Operating Instructions, her account of the first year of raising her son by herself, went a long way towards convincing me that even fucked up, broken people can be good parents. I've been a little less enamored of her later work, as she has delved further and further into a Christian world into which I have a hard time following. Even then, however, she writes more about spirituality than religion, and so it's not so hard to digest. A lot of it actually speaks to me, as scary as that can be sometimes.
I don't know if you remember this or have been reading long enough to catch it the first time I wrote about it, but when I was looking for a literary agent, I knew I'd found the right one when she compared my writing to Anne Lamott's. I don't think for a moment that I'm nearly as good a writer, but I'd like to think that we're on the same path. Minus a lot of the Jesus, perhaps, but still.
So if you're a Dallas area stalker and would like to kill me, you should hide outside the Barnes & Noble at Lincoln Park in Dallas tomorrow night. I've got to warn you, though. The pain in my mouth and the bullshit in RobWorld is making me mean. You might have to sneak up on me.
Tomorrow after work, I'm going to try to go see a book signing by Anne Lamott.
I've always been a big fan of Anne Lamott. Her book on writing, Bird by Bird, had helped me immeasurably, and Operating Instructions, her account of the first year of raising her son by herself, went a long way towards convincing me that even fucked up, broken people can be good parents. I've been a little less enamored of her later work, as she has delved further and further into a Christian world into which I have a hard time following. Even then, however, she writes more about spirituality than religion, and so it's not so hard to digest. A lot of it actually speaks to me, as scary as that can be sometimes.
I don't know if you remember this or have been reading long enough to catch it the first time I wrote about it, but when I was looking for a literary agent, I knew I'd found the right one when she compared my writing to Anne Lamott's. I don't think for a moment that I'm nearly as good a writer, but I'd like to think that we're on the same path. Minus a lot of the Jesus, perhaps, but still.
So if you're a Dallas area stalker and would like to kill me, you should hide outside the Barnes & Noble at Lincoln Park in Dallas tomorrow night. I've got to warn you, though. The pain in my mouth and the bullshit in RobWorld is making me mean. You might have to sneak up on me.
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