It's been three months of contract negotiations and working out all the tiny details, a lengthy process with any publisher but especially tricky with a large house like St. Martin's Press, with their in-house divisions for things like audio books and overseas editions.
(And merchandising and game rights, oddly enough, although both remain sadly blocked out of my agreement. That's too bad; I was looking forward to my action figure, and Schuyler's Monster for Playstation 3 would have been extreme.)
Today, I am holding the first tangible result of all my agent's hard work.
Friends, I have my contract. Eleven pages.
I'm sure I'll write more about this over at the book blog later tonight, but I just wanted to mention the moment here, with all of you. (Even the assmonkeys.) Many of you have been with me from the very beginning, back before Schuyler was even born, and I know a lot of your hearts broke when she was diagnosed, too. Every time she does something great, I can feel how much pride is out there, among people who will probably never even meet her. When she stumbles, I sense all the invisible hands reaching out to catch her.
Incidentally, there's not much to say about Schuyler at the moment. She's doing well in school, keeping up with all the jabbering mainstream kids in her class and getting excited about the holidays and her birthday. Perhaps it's tempting Fate by saying this (although really, by now it should be pretty clear that Fate can kiss my ass), but Schuyler may have entered a somewhat boring part of her life, at least until she takes a copy of the book to school sometime in the next year or two and uses it to smack some pretty blonde cheerleader in the head.
I'm taking her to The Nutcracker on Friday. There's your Schuyler news. I love classical music but have always been strangely cool towards ballet, so it'll be interesting to see who becomes a twitchy freak first, Schuyler or me.
Things are moving inexorably toward the day when Schuyler's life changes because of this book. It's impossible not to consider that, and we have. It was one of the first conversations Julie and I had about the book. We decided, and still believe, that the concerns (real and imagined) are outweighed by the potential benefits for Schuyler and all the other kids out there with their own particularly monsters, and even more so for other parents who find themselves in their own world of "WTF?" when their lives get turned upside down.
I've mentioned the monkey paw aspects of this book before, but today, I'm going to allow myself to set that aside and enjoy the moment. Just a moment, and then back to the work of finishing the book, and the very real work of being Schuyler's father.
Today I'm going to enjoy looking at that last page of my contract, at the line with my signature on it, beside the word "Author". Today, I don't feel like a fraud when I read that word. And that, my friends, makes this a very, very good day.
November 21, 2006
November 20, 2006
Rob Rocks the Peg
(Originally posted at SCHUYLER'S MONSTER.)
An observant blog reader spotted this in the Sunday edition of the Winnipeg Free Press:
It’s not really news or anything, I just thought it was fun that I popped up in Winnipeg, just sort of at random.
I’m a news item, by golly, and not in that “He was always such a quiet neighbor...” sort of way. So much for my high school guidance counselor’s powers of prognostication...
An observant blog reader spotted this in the Sunday edition of the Winnipeg Free Press:
Blogger Robert Rummel-Hudson has landed a book deal based on his blog, 'Beloved Monster and Me' (belovedmonsterandme.blogspot.com), a chronicle of life with his daughter, now seven, who has an extremely rare neurological disorder. His memoir, 'Schuyler's Monster', will be published by St. Martin's Press in the Winter of 2008, Publisher's Weekly reports.
It’s not really news or anything, I just thought it was fun that I popped up in Winnipeg, just sort of at random.
I’m a news item, by golly, and not in that “He was always such a quiet neighbor...” sort of way. So much for my high school guidance counselor’s powers of prognostication...
Better
Schuyler and I bought these Chuck Taylors over the weekend. Think of it. Shoes with something to say, worn by a little girl who can't say a word. That's some fated footwear right there.
There's one good thing about depression, a great thing, actually, even if it's a little manic. When it finally lifts, you feel fucking awesome, like nothing can beat you. You may not suddenly have all the answers, but you feel like you do, and that's not nothing.
I'm sure there's a chemical element to the passive of a depressive episode. I'm not sure I care so much. It's the other reasons for improvement that interest me more. There's clarity of thought and good advice of smart friends who listen and care, and improved health, too.
And exercise. I've started hitting the treadmill at my apartment complex's workout room for an hour a day, walking at 3.5 mph. Not exactly tearing it up, but compared to the ass-to-couch regimen I've been following, it's a start.
Mostly, however, it involves reaching the point where you're just not going to be down anymore. That's how it works for me. I never know exactly why I go into a down period, other than identifying the things that trigger it on the surface, and likewise I have no idea exactly what makes my mind arrive at "Oh, fuck this", either.
But I feel better, and stronger, and ready for the next few weeks. I need to finish the book, have a productive and successful New York City trip, and turn thirty-nine without stepping in front of a bus.
I can handle that.
There's one good thing about depression, a great thing, actually, even if it's a little manic. When it finally lifts, you feel fucking awesome, like nothing can beat you. You may not suddenly have all the answers, but you feel like you do, and that's not nothing.
I'm sure there's a chemical element to the passive of a depressive episode. I'm not sure I care so much. It's the other reasons for improvement that interest me more. There's clarity of thought and good advice of smart friends who listen and care, and improved health, too.
And exercise. I've started hitting the treadmill at my apartment complex's workout room for an hour a day, walking at 3.5 mph. Not exactly tearing it up, but compared to the ass-to-couch regimen I've been following, it's a start.
Mostly, however, it involves reaching the point where you're just not going to be down anymore. That's how it works for me. I never know exactly why I go into a down period, other than identifying the things that trigger it on the surface, and likewise I have no idea exactly what makes my mind arrive at "Oh, fuck this", either.
But I feel better, and stronger, and ready for the next few weeks. I need to finish the book, have a productive and successful New York City trip, and turn thirty-nine without stepping in front of a bus.
I can handle that.
November 16, 2006
Dreaming
Like many nights these days, I was up pretty late writing last night, finally going to bed around 2am. I woke up not long after and rolled over to discover Schuyler lying between Julie and me, watching me quietly in the dark with wide eyes. She smiled sadly when she saw me open my eyes, like she was safe at last. I knew then that she'd had a nightmare.
Schuyler's bad dreams mystify me, along with her good ones, too, I suppose. One day she'll be proficient enough on her device to describe them to us, but until then, they are lost to everyone but her. Schuyler's dreams create a world that may sometimes frighten her but is nevertheless entirely her own. That's true in some way for all of us, I guess, but for her, the things that she sees and experiences in her sleep defy explanation. I wish I could share in more of Schuyler's experiences, and her dreams most of all.
Dreams are complicated for me. In general, I am not a very New Age kind of a guy. That's probably not a huge surprise. And yet.
I won't get too moonbaby on you. It's not that I think I can predict the future or anything, because while I've had dreams that might be described as prescient, I also understand that dreams like that are most likely the subconscious working out things that the conscious mind is still trying to figure out. I had a long paragraph about how something I dreamed came true recently in a way that suggested a weird connection with Schuyler, but when I went back and read it, all I could think was "Good lord, what a load."
So I'll spare you the Crossing Over crazy talk and simply say that I have begun to listen more closely to my dreams. I wish I understood them better. And I wish I knew more about Schuyler's. I feel like there are answers there, for her and for me.
I also wish she didn't have to experience hers alone. But then, I wish that about a lot of things that I can't help her with.
Schuyler's bad dreams mystify me, along with her good ones, too, I suppose. One day she'll be proficient enough on her device to describe them to us, but until then, they are lost to everyone but her. Schuyler's dreams create a world that may sometimes frighten her but is nevertheless entirely her own. That's true in some way for all of us, I guess, but for her, the things that she sees and experiences in her sleep defy explanation. I wish I could share in more of Schuyler's experiences, and her dreams most of all.
Dreams are complicated for me. In general, I am not a very New Age kind of a guy. That's probably not a huge surprise. And yet.
I won't get too moonbaby on you. It's not that I think I can predict the future or anything, because while I've had dreams that might be described as prescient, I also understand that dreams like that are most likely the subconscious working out things that the conscious mind is still trying to figure out. I had a long paragraph about how something I dreamed came true recently in a way that suggested a weird connection with Schuyler, but when I went back and read it, all I could think was "Good lord, what a load."
So I'll spare you the Crossing Over crazy talk and simply say that I have begun to listen more closely to my dreams. I wish I understood them better. And I wish I knew more about Schuyler's. I feel like there are answers there, for her and for me.
I also wish she didn't have to experience hers alone. But then, I wish that about a lot of things that I can't help her with.
November 13, 2006
Hootenanny
There's not much new to report about Schuyler other than the completely uninteresting details of the cold that she's enduring (two words to strike fear into your heart: green elevens) and the (probably inappropriate) high black boots she wants me to get for her. (She's currently wearing a camouflage half-jacket and grapey purple hair, so I suspect we all know how this is going to end.)
In the interest of continued shameless self-promotion, let's take a look at the newly-expanded list of speakers for the MediaBistro "Blogger to Author" panel in December:
-----
-- Jessica Cutler, author of The Washingtonienne: A Novel (Hyperion), a book loosely based on her blog about her raunchy exploits as a congressional staff assistant
-- Maxwell Gillingham-Ryan, author of Apartment Therapy (Bantam), and New York editor and co-founder of Apartment Therapy, the design blog the New York Times called "quietly addicting"
-- Kate Lee, literary agent at ICM, whose client list includes prominent bloggers, reporters, editors, publishers, novelists, and memoirists
-- Laura Mazer, Managing Editor at Seal Press (an imprint of Avalon), which has published numerous titles that began as blogs
-- Robert Rummel-Hudson, author of the forthcoming memoir Schuyler's Monster (St. Martins Press) which began as an online journal about how his life was transformed when his daughter Schuyler was diagnosed with an extremely rare neurological disorder that left her unable to talk
-- Rachel Kramer Bussel, moderator, Senior Editor at Penthouse Variations, writes The Village Voice's Lusty Lady column. She's edited 13 erotic anthologies and her first novel, Everything But..., will be published by Bantam in 2008.
-----
I think it looks like an awesome mix of writers and publishing professionals, even though I think making a parenting memoir interesting in the context of everything else on the program is going to be, and I think I'm putting this charitably, challenging. I exchanged very nice email with moderator Rachel Kramer Bussel and I think this is going to be a fun and well-run panel. The end-all hootenanny of hootenannies!
I've seen photos of the other participants, and yeah, everyone's all young and good looking and hip. Well, I should say, everyone else. I clearly have some work to do. ("Hey, look at that. I had no idea Ernest Borgnine had a blog!")
If my book advance pays out in time, I do believe I may just do something that I don't believe I have ever done in my life, or at least not since I was taller than four feet high and able to choose my own clothes. I think I might buy a suit. An actual, fancy pants snazzy suit.
You know, I should get a semi-stylish haircut, too. And yeah, I know. The beard. I know.
In the interest of continued shameless self-promotion, let's take a look at the newly-expanded list of speakers for the MediaBistro "Blogger to Author" panel in December:
-----
-- Jessica Cutler, author of The Washingtonienne: A Novel (Hyperion), a book loosely based on her blog about her raunchy exploits as a congressional staff assistant
-- Maxwell Gillingham-Ryan, author of Apartment Therapy (Bantam), and New York editor and co-founder of Apartment Therapy, the design blog the New York Times called "quietly addicting"
-- Kate Lee, literary agent at ICM, whose client list includes prominent bloggers, reporters, editors, publishers, novelists, and memoirists
-- Laura Mazer, Managing Editor at Seal Press (an imprint of Avalon), which has published numerous titles that began as blogs
-- Robert Rummel-Hudson, author of the forthcoming memoir Schuyler's Monster (St. Martins Press) which began as an online journal about how his life was transformed when his daughter Schuyler was diagnosed with an extremely rare neurological disorder that left her unable to talk
-- Rachel Kramer Bussel, moderator, Senior Editor at Penthouse Variations, writes The Village Voice's Lusty Lady column. She's edited 13 erotic anthologies and her first novel, Everything But..., will be published by Bantam in 2008.
-----
I think it looks like an awesome mix of writers and publishing professionals, even though I think making a parenting memoir interesting in the context of everything else on the program is going to be, and I think I'm putting this charitably, challenging. I exchanged very nice email with moderator Rachel Kramer Bussel and I think this is going to be a fun and well-run panel. The end-all hootenanny of hootenannies!
I've seen photos of the other participants, and yeah, everyone's all young and good looking and hip. Well, I should say, everyone else. I clearly have some work to do. ("Hey, look at that. I had no idea Ernest Borgnine had a blog!")
If my book advance pays out in time, I do believe I may just do something that I don't believe I have ever done in my life, or at least not since I was taller than four feet high and able to choose my own clothes. I think I might buy a suit. An actual, fancy pants snazzy suit.
You know, I should get a semi-stylish haircut, too. And yeah, I know. The beard. I know.
November 8, 2006
An Important Message to Democrats, from an Independent voter and swell guy
Dear Democratic Party,
Please don't fuck this up.
Lovingly,
The Rob
Please don't fuck this up.
Lovingly,
The Rob
November 6, 2006
Morning
I just walked in from putting Schuyler on the bus. This is almost always the worst part of the day.
About half an hour ago, I woke from a recurring dream, a variation on one that I've had ever since Schuyler's diagnosis in the summer of 2003. It's the dream where she talks to me. I hate the dream, even though I also love it a little. I hate how I feel when I wake up and Schuyler's reality hits me all over again, dissipating the dream like smoke.
This time it was a little different. I was holding a baby girl -- our baby, the second child we were never able to have -- and I was wondering where Schuyler was and how she was doing, in that way that I usually think about her during the day, from the moment I put her on the bus and give her over to the world.
Just then, in my dream, she came up behind me and put her hand on my shoulder, and she said the same thing she always does. "It's going to be okay," she said. And then she asked where her beanbag chair was.
Julie woke me in the middle of the dream so I could put Schuyler on the bus after she left for work. I found Schuyler on the couch, getting her morning Zaboomafoo fix. I asked her how she was doing. She smiled and silently gave me a thumbs up.
It's going to be okay. I still hurt for her, though.
About half an hour ago, I woke from a recurring dream, a variation on one that I've had ever since Schuyler's diagnosis in the summer of 2003. It's the dream where she talks to me. I hate the dream, even though I also love it a little. I hate how I feel when I wake up and Schuyler's reality hits me all over again, dissipating the dream like smoke.
This time it was a little different. I was holding a baby girl -- our baby, the second child we were never able to have -- and I was wondering where Schuyler was and how she was doing, in that way that I usually think about her during the day, from the moment I put her on the bus and give her over to the world.
Just then, in my dream, she came up behind me and put her hand on my shoulder, and she said the same thing she always does. "It's going to be okay," she said. And then she asked where her beanbag chair was.
Julie woke me in the middle of the dream so I could put Schuyler on the bus after she left for work. I found Schuyler on the couch, getting her morning Zaboomafoo fix. I asked her how she was doing. She smiled and silently gave me a thumbs up.
It's going to be okay. I still hurt for her, though.
October 31, 2006
Halloween Confession
Yesterday morning, after we'd gotten ready for school but before the bus arrived, Schuyler and I were sitting on the couch, watching television. She was eating her breakfast of apple slices and generally absorbed in a high energy show about animals, hosted by a lemur puppet whose name I am entirely too lazy to look up how to spell. Parents, you know the one.
I looked over at her and asked, "Are you excited about Halloween?"
"Yeah," she said, not looking away from her show.
"Are you looking forward to being a witch?"
"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.
"Tell me, Schuyler, are you a good witch or a bad witch?"
She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.
"BAD."
Well. There you go.
I looked over at her and asked, "Are you excited about Halloween?"
"Yeah," she said, not looking away from her show.
"Are you looking forward to being a witch?"
"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.
"Tell me, Schuyler, are you a good witch or a bad witch?"
She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.
"BAD."
Well. There you go.
Come see Mister Fancy Pants
NYC
Originally uploaded by Citizen Rob.
Those of you living in the New York City area might be wondering to yourselves, "Say, I wonder what I'm going to be doing on the evening of Monday, December 11? Surely there's some way I can spend, say, twenty bucks or so and be both informed and amused!"
From Blogger to Author: How Bloggers Got Book Deals, and What Happened Next
Monday, December 11, 7-9 pm
Small Press Center
20 West 44th Street
New York, NY 10036
212-764-7021
I had no idea that Jessica "Washingtonienne" Cutler is going to be one of the speakers. I'm going to have to try extra hard to be interesting now. "Yeah yeah yeah, crazy sexual exploits in the halls of power are interesting, I suppose, but what we REALLY want to hear about is the Big Box of Words!"
Don't worry. I'll make stuff up if I have to. For twenty bucks, you deserve some zazz.
On second thought...
First of all, I want to thank everyone who has been concerned about my health. I really appreciate it.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
October 30, 2006
Wiccan nugget
First off, no, I haven't had my little pebble baby yet. And everything you've heard about how painful kidney stones can be? Um, it's all true. Fuck a duck, this hurts.
But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.
We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.
I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.
But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.
The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.
We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.
Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)
You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.
Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.
But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."
Halloween is her day to just be a kid.
As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.
But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.
We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.
I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.
But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.
The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.
We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.
Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)
You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.
Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.
But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."
Halloween is her day to just be a kid.
As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.
October 28, 2006
Audience participation
Come on, everyone, chant it with me.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
October 26, 2006
Rock star
So last night I got this massive pain in my left kidney, like I had been kicked hard, and just this once, I was smart enough not to ignore it. I had Julie take me to the hospital, and sure enough, it was a kidney stone.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
October 21, 2006
Stalking for Dummies
Just wanted to take a moment to let everyone know that I will be crawling out of my little writing cave for two public events in the coming month or two.
On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.
On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.
Stalkers, sharpen your knives and make your plans.
On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.
On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.
Stalkers, sharpen your knives and make your plans.
October 16, 2006
Getting schooled, and good
I just finished the chapter describing Schuyler's condition (the beginning paragraphs of which inspired my last entry), and in the process, I learned a few things. Part of that came from research I did, both online and with the help of Dana, who remains one of my best friends even from Connecticut. I also wrote to the two top experts on Schuyler's disorder: Dr. William Dobyns, who saw Schuyler in Chicago back in January 2005, and the Christopher Walsh Laboratory at Harvard. They both wrote me back with a ton of information, much of which appears to be in English but is clearly written for someone smarter than myself.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
October 9, 2006
Found Wisdom
Schuyler
Originally uploaded by Citizen Rob.
I ran across this while researching something for my book, and it resonated so strongly with me that I wanted to share it.
I don't always think people understand why Schuyler's situation makes me so sad sometimes. I'm not always sure I understand it myself.
-----
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
-- The Impact of Childhood Disability: The Parent's Struggle, by Ken Moses, Ph.D.
October 6, 2006
Where she lives
Ballerina artist
Originally uploaded by Citizen Rob.
Typically, when I write a blog entry, I start with the topic and go from there. When I'm done writing, I'll go find a photo that will go with it, or I'll take one if I need one. Or perhaps I'll steal one from someone else's page, maybe yours! The point is, usually the photo comes last, as an accompaniment to the writing.
This morning as I was leaving for work, Schuyler was drawing with her big markers, wearing her little ballerina outfit that she inexplicably puts on when she's playing around the apartment. I have no idea what the appeal might be, particularly since she doesn't really dance around much when she wears it. Anyway, she was drawing quietly with her markers, and I thought it was cute so I took a few photos on my way out the door.
It wasn't until later, after I loaded the photos into my computer, that I saw what I had captured, and knew that I wanted to write about it.
Anyone who has ever met Schuyler and spent any time with her knows how sociable she is. She is outgoing and friendly and not one bit shy. It's almost scary sometimes, how warm and happy and turned-up-to-eleven she can be.
But Schuyler lives most of her life inside her head. It's not so pervasive as it was when she was younger. She can make herself more clearly understood now, she has options she didn't have before. But she only makes those connections when it suits her, and much of the time, it doesn't.
Strangely, this is a side of Schuyler that I understand completely. When she disappears inside her own head like she's doing in that photo, I get it. It's not because of her monster, not entirely. I think she retreats there because it's a place where she makes sense. Schuyler is a social creature, but she is also a very internal one, a person who can be totally alone in a crowded room. I watch her withdraw, not out of sadness or anger or stress, but simply because that's where she lives, inside herself. And I get it, because it's where I live, too.
Tomorrow, she and I will spend the day at home together, and I know that like on most days we have, we'll spend part of it just sitting together. She'll draw or play with her dolls, making them speak to each other in her strange moonman language (she never uses her device to make them talk; she tried that early on, making her dinosaurs say "I love you" to each other, but that didn't last) while I write. We'll do that for hours, and we'll never say a word, and it'll be perfect.
I guess I like that shot because I take a lot of photos of Schuyler that show the vibrant part of her personality, but I feel like a real photographer when I take one that shows her where she lives, inside that strange and broken and beautiful head.
October 4, 2006
The end of days are nigh. Maybe. Nighish.
For those of you who might be religious in nature, I have two things to report that may nor may not signal the coming Apocalypse.
Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.
Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.
I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.
Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.
So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.
Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.
But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."
Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.
Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.
I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.
Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.
So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.
Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.
But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."
September 26, 2006
Best line: "A monkey posing as a newscaster..."
I've been staying away from politics for a while, mostly out of depression over the failure of the Democratic Party and the mainstream media to hold the Bush Administration accountable for its actions both before and since 9/11. But after watching Bill Clinton's spirited interview with Fox "News" talking head Chris Wallace, I felt something I hadn't felt in a while. I felt proud of a Democrat. Figures it would be one who's been out of office for five very long years.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
September 25, 2006
Happy birthday, dead guy.
I would be a bad bad Prophet of Dmitri if I didn't take note of the 100th Anniversary of the birth of my favorite composer, Dmitri Shostakovich.
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
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