I know this is what old people do, but here's the message I just sent to the Animal Planet Channel, regarding something I just saw on their 100 percent not funny "World's Funniest Animals" show while channel surfing:
I was just watching your "Funniest Animals" program, and the show was having a great big laugh at video of a little white dwarf hamster doing repeated flips. Ha! Hilarious!
Except of course that some dwarf hamsters do this not for fun or amusement, but because they suffer from a genetic disorder. Most of them don't live long, as they become exhausted by their involuntary flipping and eventually die from compromised immune systems.
I wouldn't expect more sensitivity from a generic network program, but you are Animal Planet. You might be the one channel where one might expect a little sympathy towards animals.
I'm disgusted and saddened.
Poor little guy. He was just flipping, about every three seconds. Imagine trying to walk around or eat or lick your little hamster balls or whatever. How can you live your life when every few seconds, you do a backflip?
Fucking Animal Planet.
March 30, 2006
A Million Miles Away
I left New Haven, Connecticut three years ago, in order to be closer to my family while we tried to figure out what to do with Schuyler. Looking back on the decision, it was, in a roundabout way, a very good one. Schuyler's box class wouldn't have been possible in New Haven, whose public schools were woefully unprepared for Schuyler and her monster. Leaving New Haven was the right decision. But it was also a sad one, saddest of all because of the friend I left behind.
I miss Dana. I try not to think about it too much, but she has been one of the closest friends I've ever had, and one of Schuyler's closest, too. I don't tell her enough how much she means to me; I'm not very good at goodbyes, and I probably left far too much unsaid with Dana.
But the thing I need to say most of all today is that I am truly, truly sorry, and that while I have no idea how I'd help if I were still there, I still feel like I'm a million miles away.
I miss Dana. I try not to think about it too much, but she has been one of the closest friends I've ever had, and one of Schuyler's closest, too. I don't tell her enough how much she means to me; I'm not very good at goodbyes, and I probably left far too much unsaid with Dana.
But the thing I need to say most of all today is that I am truly, truly sorry, and that while I have no idea how I'd help if I were still there, I still feel like I'm a million miles away.
March 29, 2006
"Sorry Daddy"
A few days ago, we took Schuyler to the mall for some much needed clothes shopping. While we were there, I found her a multicolored raincoat that was both sale priced and irresistible. When I make my move to conquer the planet, I won't use atomic bombs or mass mind control. I'll simply put Schuyler on television in this raincoat and say, "She'd like the whole world, please." The rest of you will have no choice but to comply, all the while issuing one giant planet-wide "awww..."
Along with the raincoat was a little matching umbrella. While she was mostly indifferent to the Amazing Technicolor World Domination Raincoat, Schuyler lost her mind over the umbrella. We got it for her, of course (because even without the raincoat on, I'm powerless over Schuyler's big anime eyes), and she walked around the mall with it like a dapper English country squire, albeit one who trips over her umbrella now and again.
Well, we made a mistake yesterday. We allowed her to take her umbrella to school, even though we knew better. She rides the bus to school, and then rides another bus after that to her after-school program until we go pick her up. If something doesn't fit inside her backpack, it tends to get left behind at some point. Sure enough, when we picked her up yesterday, she was sans umbrella.
I was pretty irritated with her when we got in the car, and she could tell. My friend Tracy once wrote of Schuyler that...
I don't know if she worships me, but she doesn't like to disappoint, that's very true. I asked her shortly where her umbrella was, and she looked back at me with sad, sad eyes.
"Where is it, Schuyler?" I asked. "Is it at school?" Blank look. I sighed with frustration. "Tell me on your device, then. Where did you leave your umbrella?"
She pulled her Big Box of Words out of her bag and searched for a moment.
"Bus."
"You left it on the bus?" I said. She nodded, her lip sticking out just a bit.
I sat in silence as Julie drove. I heard Schuyler punching buttons on the BBoW. Then she hit the button to speak.
"Sorry."
I looked back at her, but she was searching for another word. She hit the speak button again.
"Sorry Daddy."
Did you hear that sound? That was my heart breaking in two.
Along with the raincoat was a little matching umbrella. While she was mostly indifferent to the Amazing Technicolor World Domination Raincoat, Schuyler lost her mind over the umbrella. We got it for her, of course (because even without the raincoat on, I'm powerless over Schuyler's big anime eyes), and she walked around the mall with it like a dapper English country squire, albeit one who trips over her umbrella now and again.
Well, we made a mistake yesterday. We allowed her to take her umbrella to school, even though we knew better. She rides the bus to school, and then rides another bus after that to her after-school program until we go pick her up. If something doesn't fit inside her backpack, it tends to get left behind at some point. Sure enough, when we picked her up yesterday, she was sans umbrella.
I was pretty irritated with her when we got in the car, and she could tell. My friend Tracy once wrote of Schuyler that...
She worships her father. I don't know if Rob recognizes it as clearly as those of us outside can. Disappointing him causes Schuyler the greatest sadness you've ever seen. Eyes brimming, lip trembling, big shuddering sniffling sobs. It would be fully heart-breaking... if one had not just witnessed the particularly punk-ass behavior that got her in trouble in the first place.
I don't know if she worships me, but she doesn't like to disappoint, that's very true. I asked her shortly where her umbrella was, and she looked back at me with sad, sad eyes.
"Where is it, Schuyler?" I asked. "Is it at school?" Blank look. I sighed with frustration. "Tell me on your device, then. Where did you leave your umbrella?"
She pulled her Big Box of Words out of her bag and searched for a moment.
"Bus."
"You left it on the bus?" I said. She nodded, her lip sticking out just a bit.
I sat in silence as Julie drove. I heard Schuyler punching buttons on the BBoW. Then she hit the button to speak.
"Sorry."
I looked back at her, but she was searching for another word. She hit the speak button again.
"Sorry Daddy."
Did you hear that sound? That was my heart breaking in two.
March 27, 2006
Tiny ghosts
I was out taking some photos for work this afternoon and decided to take a walk to one of my favorite spots on campus. When I was a student here, I found the spot completely by accident one day while I was out exploring the campus, and to this day I have never seen a mention of this place in print or heard another human being speak of it. I mentioned it to the grad student in my office, and he knew nothing about it at all, even though it's only about half a block away. Almost no one on campus seems to know about it, despite the fact that all that separates it from the main administrative campus building is a parking lot, a street, and about twenty yards across a small creek.
About a hundred years ago, the Berachah Industrial Home was established on what is now this campus for the protection of homeless girls and unwed mothers. (Contemporary accounts referred to them as "wild girls".) At the time, there were ten buildings, including a print shop for the publication of the Purity Journal. (I'll bet that was a fun read.) Now, the only thing remaining is the cemetery, which contains about eighty graves and dates from 1904. The home closed down in the 1930s.
Most of the graves are of children, and are marked by a simple flat stone flush with the ground. Some of them are engraved with antique-sounding names like Ruth or Pearl, but most are simply marked with the word "infant" and a number. As melancholy as most cemeteries are, this one might be the saddest one in the world.
It's not a raw, immediate kind of sad. If these babies had survived, they would almost certainly have died long ago, maybe after living long, eventful lives. They would have been almost middle-aged by the time World War II began, after all. All the same, there's a heavy feeling of "Might Have Been" in the air, and if there are ghosts lurking in those quiet trees, they are very tiny ghosts indeed.
When I was a student, I would go out to the cemetery when I needed to escape or think or just be alone. Sometimes I would bring my trombone and play a Bach Sarabande for the Infant No. Whatevers. I haven't been back in over a decade, but I should have known that nothing would have changed.
I needed to go back. I'm sure it won't be the last time.
About a hundred years ago, the Berachah Industrial Home was established on what is now this campus for the protection of homeless girls and unwed mothers. (Contemporary accounts referred to them as "wild girls".) At the time, there were ten buildings, including a print shop for the publication of the Purity Journal. (I'll bet that was a fun read.) Now, the only thing remaining is the cemetery, which contains about eighty graves and dates from 1904. The home closed down in the 1930s.
Most of the graves are of children, and are marked by a simple flat stone flush with the ground. Some of them are engraved with antique-sounding names like Ruth or Pearl, but most are simply marked with the word "infant" and a number. As melancholy as most cemeteries are, this one might be the saddest one in the world.
It's not a raw, immediate kind of sad. If these babies had survived, they would almost certainly have died long ago, maybe after living long, eventful lives. They would have been almost middle-aged by the time World War II began, after all. All the same, there's a heavy feeling of "Might Have Been" in the air, and if there are ghosts lurking in those quiet trees, they are very tiny ghosts indeed.
When I was a student, I would go out to the cemetery when I needed to escape or think or just be alone. Sometimes I would bring my trombone and play a Bach Sarabande for the Infant No. Whatevers. I haven't been back in over a decade, but I should have known that nothing would have changed.
I needed to go back. I'm sure it won't be the last time.
March 26, 2006
No comprende, it's a riddle.
So there I was, at the wedding reception, watching the mariachi band outside the hall warming up and getting ready to walk in.
I snapped a bunch of shots of them, really got some good ones, and was all ready to get more when the leader counted them off and they started to play.
And that's when they walked into the reception for the wedding across the hall from the one I was actually shooting.
I snapped a bunch of shots of them, really got some good ones, and was all ready to get more when the leader counted them off and they started to play.
And that's when they walked into the reception for the wedding across the hall from the one I was actually shooting.
March 25, 2006
Working weekend
Well, we're going to see just how much energy I have.
I shot a wedding yesterday here in Dallas.
I'm about to drive down to Austin this morning, shoot a LONG wedding there, and then come back in the wee hours.
I've been limping around like Verbal Kint but otherwise am feeling okay. I think I feel better when I'm working a wedding. Again, with the exercise. Also, today is the aniversary of the day my father died, which is always kind of a weird day for me, but never more than this year when it suddenly feels a little more immediate. Working will hopefully be a good distraction.
So there it is. Wish me luck, and have a great weekend.
I shot a wedding yesterday here in Dallas.
I'm about to drive down to Austin this morning, shoot a LONG wedding there, and then come back in the wee hours.
I've been limping around like Verbal Kint but otherwise am feeling okay. I think I feel better when I'm working a wedding. Again, with the exercise. Also, today is the aniversary of the day my father died, which is always kind of a weird day for me, but never more than this year when it suddenly feels a little more immediate. Working will hopefully be a good distraction.
So there it is. Wish me luck, and have a great weekend.
March 22, 2006
Ugh.
Hey, you know how sometimes you just feel down? Like all the little bullshit life things just catch up to you all at once?
That's sort of how I'm feeling these days, on top of not physically doing as well as I want to be.
You know, I joke about being old, fat and drunk, and eating a bunch of crap, but the truth is that according to Dr. Hottie and the diabetes literature, I'm relatively young for diabetes, I only need to lose about twenty pounds, and my diet? Well, yeah, that was pretty bad, but I've never smoked and I haven't been a big drinker for a few years.
All of this is good in the sense that being old and fat is generally considered to be a Bad Thing. I'm no doctor, but ask any old fat person and I'll bet they'll tell you it sucks.
But the bad thing is that my diabetes is probably mostly due to genetics, according to my doctor. (And don't forget, she's hot, so you know she can be trusted.) My father died from his, despite the fact that he was slim and athletic, never smoked and drank only occasionally, in that Texas good ol' boy, "drink a beer while watching the ballgame" sort of way. He was the quarterback in high school and was a coach until the day he died, and yet his diabetes and his heart killed him at the age of 51.
My point is not to be all maudlin about my father (although I get that way this time of year, near the anniversary of his death), but rather to point out that if I were diabetic solely because of my unhealthy lifestyle, I could just change my lifestyle and go a long way towards getting healthy. This might be trickier than I thought, though. Changing the way I live is going to help, but it might not have the drastic improvement that I'm hoping for. Keeping my blood sugar down is hard, and it's not down where it should be by now, and I feel a little like I'm swimming upstream.
But I'll keep trying and keep eating better and exercising more and trying to stay positive about my own health even as I continue to try to help Schuyler (who's having some reading problems in school, as we always feared she would, although really, how do they know, you know?). And I'll try to stay positive about every other little personal thing that comes up in the same way they come up for every person in the world.
But I've got to tell you, just here lately, it's been wearing me down. It won't for long; I'm Chumbawamba, you know.
That's sort of how I'm feeling these days, on top of not physically doing as well as I want to be.
You know, I joke about being old, fat and drunk, and eating a bunch of crap, but the truth is that according to Dr. Hottie and the diabetes literature, I'm relatively young for diabetes, I only need to lose about twenty pounds, and my diet? Well, yeah, that was pretty bad, but I've never smoked and I haven't been a big drinker for a few years.
All of this is good in the sense that being old and fat is generally considered to be a Bad Thing. I'm no doctor, but ask any old fat person and I'll bet they'll tell you it sucks.
But the bad thing is that my diabetes is probably mostly due to genetics, according to my doctor. (And don't forget, she's hot, so you know she can be trusted.) My father died from his, despite the fact that he was slim and athletic, never smoked and drank only occasionally, in that Texas good ol' boy, "drink a beer while watching the ballgame" sort of way. He was the quarterback in high school and was a coach until the day he died, and yet his diabetes and his heart killed him at the age of 51.
My point is not to be all maudlin about my father (although I get that way this time of year, near the anniversary of his death), but rather to point out that if I were diabetic solely because of my unhealthy lifestyle, I could just change my lifestyle and go a long way towards getting healthy. This might be trickier than I thought, though. Changing the way I live is going to help, but it might not have the drastic improvement that I'm hoping for. Keeping my blood sugar down is hard, and it's not down where it should be by now, and I feel a little like I'm swimming upstream.
But I'll keep trying and keep eating better and exercising more and trying to stay positive about my own health even as I continue to try to help Schuyler (who's having some reading problems in school, as we always feared she would, although really, how do they know, you know?). And I'll try to stay positive about every other little personal thing that comes up in the same way they come up for every person in the world.
But I've got to tell you, just here lately, it's been wearing me down. It won't for long; I'm Chumbawamba, you know.
March 21, 2006
Punkass 2.0
As I was taking more photos of my shoes to put them on eBay, Schuyler watched for a few minutes and then went and grabbed her pair of high tops and presented them for photographic documentation.
it's comforting to know that a family tradition of fun shoes has been passed on.
Someone at school has apparently taught her "Rock Paper Scissors", and she insists on playing it any time we are sitting down together, usually over dinner. She's a cheater, though. She waits a split second after you throw down your choice and then reacts accordingly. Also, her paper and her scissors looks suspiciously alike, so she can change at a moment's notice if she has to.
Punk.
it's comforting to know that a family tradition of fun shoes has been passed on.
Someone at school has apparently taught her "Rock Paper Scissors", and she insists on playing it any time we are sitting down together, usually over dinner. She's a cheater, though. She waits a split second after you throw down your choice and then reacts accordingly. Also, her paper and her scissors looks suspiciously alike, so she can change at a moment's notice if she has to.
Punk.
An All Star no more
The end of an era is nigh. I'm getting rid of my crazy cool hipster shoes.
A few years ago, back when we lived in Connecticut and I had a fancy university job (well, at least that's come full circle), I wrote an entry about my shoe love. There was a time when all I wore were fun tennis shoes, mostly Converse Chuck Taylors and Vans. They were the item of choice when I was in need of retail therapy, and they gave me the illusion of youth. Say what you will about me, but I was a Fun Shoe Guy.
I haven't been able to wear my Chuck Taylors for about a year now, not for any length of time, and since I got my diagnosis, I now know why. I've recently embraced the Way of the Gimp Shoe, although I went with the New Balance which, in addition to being doctor-approved for younger beedies patients with early onset neuropathy issues, are cheaper and much less sad and gimply than the actual medical diabetic shoes. I now have two pairs of shoes that I can wear, as well as my old ugly leather slip-ons. And that's cool, I can deal with that. If I can quit drinking, I can quit wearing fun shoes. (As for the drinking thing, my pancreas is an evil little monster for taking away my booze. Just so you know. I'm a hoot at social gatherings now, trust me.)
The problem for me is that having all my old shoe friends sitting in the closet is both a sad reminder of better days and an unhealthy temptation. The few times I've tried to wear a pair of Chucks or Vans just for old times sake have ended in limping sorrow.
Someone suggested that I try to sell them on eBay, which I thought was both funny and a little nasty. Remember that part about how I wore them almost every day of my life? Even spread out among half a dozen pairs of Chucks and four pairs of Vans, that's still a lot of time spent on my big feet. Even given the fact that I wasn't exactly out there playing basketball in them, we're still talking about shoes that aren't even remotely new.
But I went on eBay, and sure enough, people are selling nasty old Chuck Taylors. I think the key word they all use is "vintage", which in some cases means that they are shoes from like the 60s that haven't been in production for years and would be of interest to collectors. But a lot of the ones I looked at were clearly just used. Still, people are out there buying them.
So sure, I'll give it a shot. I've never sold anything on eBay, but then I never had a hot item like smelly, old, freakishly large, extremely distressed, VINTAGE tennis shoes to offer, either.
A few years ago, back when we lived in Connecticut and I had a fancy university job (well, at least that's come full circle), I wrote an entry about my shoe love. There was a time when all I wore were fun tennis shoes, mostly Converse Chuck Taylors and Vans. They were the item of choice when I was in need of retail therapy, and they gave me the illusion of youth. Say what you will about me, but I was a Fun Shoe Guy.
I haven't been able to wear my Chuck Taylors for about a year now, not for any length of time, and since I got my diagnosis, I now know why. I've recently embraced the Way of the Gimp Shoe, although I went with the New Balance which, in addition to being doctor-approved for younger beedies patients with early onset neuropathy issues, are cheaper and much less sad and gimply than the actual medical diabetic shoes. I now have two pairs of shoes that I can wear, as well as my old ugly leather slip-ons. And that's cool, I can deal with that. If I can quit drinking, I can quit wearing fun shoes. (As for the drinking thing, my pancreas is an evil little monster for taking away my booze. Just so you know. I'm a hoot at social gatherings now, trust me.)
The problem for me is that having all my old shoe friends sitting in the closet is both a sad reminder of better days and an unhealthy temptation. The few times I've tried to wear a pair of Chucks or Vans just for old times sake have ended in limping sorrow.
Someone suggested that I try to sell them on eBay, which I thought was both funny and a little nasty. Remember that part about how I wore them almost every day of my life? Even spread out among half a dozen pairs of Chucks and four pairs of Vans, that's still a lot of time spent on my big feet. Even given the fact that I wasn't exactly out there playing basketball in them, we're still talking about shoes that aren't even remotely new.
But I went on eBay, and sure enough, people are selling nasty old Chuck Taylors. I think the key word they all use is "vintage", which in some cases means that they are shoes from like the 60s that haven't been in production for years and would be of interest to collectors. But a lot of the ones I looked at were clearly just used. Still, people are out there buying them.
So sure, I'll give it a shot. I've never sold anything on eBay, but then I never had a hot item like smelly, old, freakishly large, extremely distressed, VINTAGE tennis shoes to offer, either.
March 19, 2006
Beauty and the Beast
Good lord, Schuyler just saw her first television commercial for the upcoming DVD release of King Kong.
She just lost her little mind.
As soon as she heard him roar, she jumped up from the table and ran over to the television, pointing and yelling and, yes, beating her chest in a most Konglike manner.
Her King Kong love knows no bounds. These days, if you ask her if she's a princess, she says no. You can run down the list of things she might be, and she says no to them all. Finally, ask her what she is, and she'll beat her chest like King Kong and then show with a hand raised high that she is in fact big like Kong, too.
I wrote about her love for King Kong and for dinosaurs and monsters back in November, after the Supreme Court ruled against a group of special needs parents.
It's not just that Schuyler is fearless, although that's definitely true enough. She knows how to pick her friends.
The movie comes out on DVD on March 28th, and I can only assume we'll be seeing a lot of these commercials between now and then.
It's going to be a long week.
She just lost her little mind.
As soon as she heard him roar, she jumped up from the table and ran over to the television, pointing and yelling and, yes, beating her chest in a most Konglike manner.
Her King Kong love knows no bounds. These days, if you ask her if she's a princess, she says no. You can run down the list of things she might be, and she says no to them all. Finally, ask her what she is, and she'll beat her chest like King Kong and then show with a hand raised high that she is in fact big like Kong, too.
I wrote about her love for King Kong and for dinosaurs and monsters back in November, after the Supreme Court ruled against a group of special needs parents.
Schuyler isn't afraid of her monster, because she has monsters of her own that she believes will fight for her. Long ago, when she was just a baby, she became fascinated with a small toy figure of King Kong that I had on a shelf in our living room back in Connecticut. He's fierce, snarling as he busts loose from his chains, a tiny flinching Fay Wray at his feet to give him scale. Schuyler loves King Kong, and when the trailer for the new film became available, she watched it over and over, her little Kong toy watching beside her. She growled with Kong on the screen, recoiled in mock terror at the snapping jaws of a dinosaur, and clapped triumphantly when Kong went on his terrible rampage. You can judge me if you like, but when the movie comes out, I already have a date lined up. I wouldn't dream of seeing Schuyler's hero on the big screen without her.
Inappropriate? Whatever. I truly believe that Schuyler loves princesses and fairies because she wants to be one, but she also loves dinosaurs and monsters and giant angry gorillas because she wants them to be her friends. She knows enough about this grand rough world to pick her allies carefully and extravagantly. She has an enemy monster living in her head, but in her heart of hearts, she has a giant fierce gorilla that will stand behind her like he stands behind Naomi Watts in the trailer, ready to beat his chest and jump into battle against dinosaurs or arrogant administrators or the Supreme Court if they threaten her.
She's looking for a King Kong to help her fight tiny monsters...
It's not just that Schuyler is fearless, although that's definitely true enough. She knows how to pick her friends.
The movie comes out on DVD on March 28th, and I can only assume we'll be seeing a lot of these commercials between now and then.
It's going to be a long week.
March 18, 2006
Lessons
We took Schuyler to a birthday party for one of her little cyborg classmates today. When we got to the restaurant where it was being held (a pizza place called Nick 'n Willy's, but which I can't help but call Naked Willies because I gotta be me), we found the place packed with kids, decorating their little blue aprons with markers and pounding out little blobs of what I hope was fake pizza dough. A few of them were from the Box Class, but mostly they were a bunch of regular, jabbery little kids. (In the Lingo of the Broken, they were what would be referred to as "Neuro-typical". Remember that and impress your friends at your next company picnic.)
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.
March 17, 2006
You are good folk.
If you go over to the donation page I mentioned yesterday, you'll see that the project has now been fully funded. I said it would be cool if it was funded in a day, and so it was.
Now, several sites were sending people over there, not just this one, so I'm not going to say that it was you folks who stepped up and made this happen.
However, when I think of the charitable things my friends and readers have done in the past (and I do think about it every day, when Schuyler uses her Big Box of Words), I feel pretty confident that the person who created that donor page is happily wondering who this Schuyler person is, anyway.
So there you go. You've created yourselves a Big Box of Karma for the weekend. Have fun spending it.
Now, several sites were sending people over there, not just this one, so I'm not going to say that it was you folks who stepped up and made this happen.
However, when I think of the charitable things my friends and readers have done in the past (and I do think about it every day, when Schuyler uses her Big Box of Words), I feel pretty confident that the person who created that donor page is happily wondering who this Schuyler person is, anyway.
So there you go. You've created yourselves a Big Box of Karma for the weekend. Have fun spending it.
Prayer
I have walked and prayed for this young child an hour
And heard the sea-wind scream upon the tower,
And under the arches of the bridge, and scream
In the elms above the flood stream;
Imagining in excited reverie
That the future years had come,
Dancing to a frenzied drum,
Out of the murderous innocence of the sea.
---
From "A Prayer for My Daughter," by
William Butler Yeats
And heard the sea-wind scream upon the tower,
And under the arches of the bridge, and scream
In the elms above the flood stream;
Imagining in excited reverie
That the future years had come,
Dancing to a frenzied drum,
Out of the murderous innocence of the sea.
---
From "A Prayer for My Daughter," by
William Butler Yeats
March 16, 2006
Ministry of Propaganda
A lot of you have been asking how the new job is going.
In a word? Sweet. It may be too early to say this, but I feel like I might just have found a good fit. My boss is a good guy who's not interested in micromanaging, and the other people I work with are pleasant and seem genuinely happy to have me there. (That part is probably true enough. The duties that are being consolidated into my position, which is a new one, have been handled for a while by just about everyone else.)
To be fair, it's sort of hard to say for sure how things are going so far, since I had the good sense to start a new job at a university during spring break. I spent the past two days settling in without a lot of chaos around me. I attended a new hire orientation, got set up for access to the web pages I'll be responsible for maintaining, scheduled meetings with various public relations people on campus, and generally began to put together a plan for what exactly I'll be doing in the coming weeks.
Oh, and I set up my new office.
That's right, an office. With a big window. I can watch pigeons while I work. They certainly seem to be watching me. In my office. Where I work. Sitting down. Not selling Andrea Bocelli to anyone.
It's actually going to be the Communications Office, and I'll be sharing it with a grad student who'll be helping with a lot of the graphics and print publications. When I first stepped into the office, there was one desk, placed in the center of the room. I tried using it like that, but I felt a little too imperial. When I think "Communications Office", in my head there are projects spread out everywhere and a constantly ringing phone and a ticker of some kind chugging away in the background, spitting out important news of the moment.
That's how should be, in the fast-paced, thrill-a-minute office of the Coordinator of Communications.
Although personally, I prefer "Minister of Propaganda", if it's all the same to you.
In a word? Sweet. It may be too early to say this, but I feel like I might just have found a good fit. My boss is a good guy who's not interested in micromanaging, and the other people I work with are pleasant and seem genuinely happy to have me there. (That part is probably true enough. The duties that are being consolidated into my position, which is a new one, have been handled for a while by just about everyone else.)
To be fair, it's sort of hard to say for sure how things are going so far, since I had the good sense to start a new job at a university during spring break. I spent the past two days settling in without a lot of chaos around me. I attended a new hire orientation, got set up for access to the web pages I'll be responsible for maintaining, scheduled meetings with various public relations people on campus, and generally began to put together a plan for what exactly I'll be doing in the coming weeks.
Oh, and I set up my new office.
That's right, an office. With a big window. I can watch pigeons while I work. They certainly seem to be watching me. In my office. Where I work. Sitting down. Not selling Andrea Bocelli to anyone.
It's actually going to be the Communications Office, and I'll be sharing it with a grad student who'll be helping with a lot of the graphics and print publications. When I first stepped into the office, there was one desk, placed in the center of the room. I tried using it like that, but I felt a little too imperial. When I think "Communications Office", in my head there are projects spread out everywhere and a constantly ringing phone and a ticker of some kind chugging away in the background, spitting out important news of the moment.
That's how should be, in the fast-paced, thrill-a-minute office of the Coordinator of Communications.
Although personally, I prefer "Minister of Propaganda", if it's all the same to you.
Why does mutism happen to exactly the wrong people?
I received an email from one of the screeching harpies that recently went to so much trouble to boldly (ie. anonymously at first) start shit with me for taking donations on my site. The subject line said simply "Dare ya".
The body of the message contained a link, to this donation page by a special needs caretaker looking for help in purchasing portable communication devices for poor kids who need them.
At first I had no idea if said harpy was trying to bury the hatchet by asking me to help someone who was in the same situation as Schuyler. When I went to her page, however, it became clear that once again, even in the guise of helping someone in need, she was taking another opportunity to be hateful.
Okay, so a few things I'd like to say about this.
1) I'd LOVE it if the readers of my blog were to be responsible for putting this particular donor request over the top and make this happen. Imagine if the friends of Schuyler out there donated (in her name if you feel like feeding my bloated ego) enough to cover the cost of these devices before the end of the night? (Or tomorrow night, since Blogger appears to be having Issues this evening.)
2) My only hesitation here is that the devices that they are trying to buy, while certainly affordable and perhaps appropriate for the kids in question, are made by a company whose product line left us pretty underwhelmed when we were testing augmentative alternative communication devices with Schuyler last year. Again, perhaps they are being purchased for kids who are so severely affected that they won't ever need to progress to a more advanced system. If not, however, this particular device won't (in my admittedly underinformed opinion) provide a very significant long-term solution, and that's an important part of investing in an AAC device, regardless of the cost.
If you'd like an alternative donation option, you might try contacting the Prentke Romich Company (makers of the Big Box of Words) and let them know that you are interested in helping either a school or an individual family that is trying to purchase a similar device. They have a whole division dedicated to funding and would almost certainly be able to point you in the right direction. PRC is the AAC device of choice of a lot of programs, including the amazing cyborg class that Schuyler is a part of here in North Dallas. If you help someone who's trying to get a PRC box, you'll be certain that you are putting your money into a powerful tool.
3) Why someone would be so hateful as to suggest that I wouldn't be willing to help another parent in the same situation as myself is beyond me, particularly if they were trying to get me to lend a hand? Is the idea that a person who donates to another kid's device might not send money to greedy me and my greedy kid? News flash, genius. Schuyler already has one. "Charitable blackmail"? What the fuck?
Yeah, she must be a real delight to come home to every night.
Anyway, if you feel so inclined, go make a donation, either to this donor request or to PRC. I think it would be cool if you did it in Schuyler's name, but again, that's just me being me.
The body of the message contained a link, to this donation page by a special needs caretaker looking for help in purchasing portable communication devices for poor kids who need them.
At first I had no idea if said harpy was trying to bury the hatchet by asking me to help someone who was in the same situation as Schuyler. When I went to her page, however, it became clear that once again, even in the guise of helping someone in need, she was taking another opportunity to be hateful.
The communication devices in question should sound familiar, no? So I cackled and forwarded the link to an Internet Titan who is adept at asking for money from his readers, and we'll see if he's interested in doing that when it doesn't directly benefit him and his. One would think someone who has been so blessed by the generous nature of his readers might want to give back. Ah, charitable blackmail. A win-win situation.
Okay, so a few things I'd like to say about this.
1) I'd LOVE it if the readers of my blog were to be responsible for putting this particular donor request over the top and make this happen. Imagine if the friends of Schuyler out there donated (in her name if you feel like feeding my bloated ego) enough to cover the cost of these devices before the end of the night? (Or tomorrow night, since Blogger appears to be having Issues this evening.)
2) My only hesitation here is that the devices that they are trying to buy, while certainly affordable and perhaps appropriate for the kids in question, are made by a company whose product line left us pretty underwhelmed when we were testing augmentative alternative communication devices with Schuyler last year. Again, perhaps they are being purchased for kids who are so severely affected that they won't ever need to progress to a more advanced system. If not, however, this particular device won't (in my admittedly underinformed opinion) provide a very significant long-term solution, and that's an important part of investing in an AAC device, regardless of the cost.
If you'd like an alternative donation option, you might try contacting the Prentke Romich Company (makers of the Big Box of Words) and let them know that you are interested in helping either a school or an individual family that is trying to purchase a similar device. They have a whole division dedicated to funding and would almost certainly be able to point you in the right direction. PRC is the AAC device of choice of a lot of programs, including the amazing cyborg class that Schuyler is a part of here in North Dallas. If you help someone who's trying to get a PRC box, you'll be certain that you are putting your money into a powerful tool.
3) Why someone would be so hateful as to suggest that I wouldn't be willing to help another parent in the same situation as myself is beyond me, particularly if they were trying to get me to lend a hand? Is the idea that a person who donates to another kid's device might not send money to greedy me and my greedy kid? News flash, genius. Schuyler already has one. "Charitable blackmail"? What the fuck?
Yeah, she must be a real delight to come home to every night.
Anyway, if you feel so inclined, go make a donation, either to this donor request or to PRC. I think it would be cool if you did it in Schuyler's name, but again, that's just me being me.
March 14, 2006
Beware the Ides of March
Tomorrow I start my new job. Beware, indeed. I'm ready. I think I'm ready, anyway.
I caught a financial break today, enough to buy a decent pair of New Balance shoes for work. I was worried; you should see the horrific leather slip-ons that have been serving as footwear for the past few months, ever since the neuropathy set in. They look like bags for my feet. You know how cartoon characters sometimes have big round feet that just sort of look like loaves of bread? That's what my old shoes look like. Now at least I can look professional and still walk without crying like a little girl.
Tonight, I'm sitting in a McDonald's with wi-fi, watching Schuyler play with some kids on the giant playland Habitrail-looking thing. There's another kid here with the same name, although it's a boy and therefore almost certainly a Skyler. He's being a bit of a punkass; I can only assume that at some point this evening, the Chubbin will unleash the Silent Fists of Justice on him.
It's always interesting to watch the tiny little social dynamics that grow around Schuyler when we're out in public. Some kids will shun her, especially here in delightful North Dallas. But it's funny how many little followers she picks up. It's been this way since she was a toddler. Other kids become fascinated with her, with her boundless energy and her strange non-word speech and her purple hair. Just now she came running over to tell me something (and honestly, I had no idea what), and no fewer than four kids were hot on her heels. She's like a little guru, or an unearthly creature.
I caught a financial break today, enough to buy a decent pair of New Balance shoes for work. I was worried; you should see the horrific leather slip-ons that have been serving as footwear for the past few months, ever since the neuropathy set in. They look like bags for my feet. You know how cartoon characters sometimes have big round feet that just sort of look like loaves of bread? That's what my old shoes look like. Now at least I can look professional and still walk without crying like a little girl.
Tonight, I'm sitting in a McDonald's with wi-fi, watching Schuyler play with some kids on the giant playland Habitrail-looking thing. There's another kid here with the same name, although it's a boy and therefore almost certainly a Skyler. He's being a bit of a punkass; I can only assume that at some point this evening, the Chubbin will unleash the Silent Fists of Justice on him.
It's always interesting to watch the tiny little social dynamics that grow around Schuyler when we're out in public. Some kids will shun her, especially here in delightful North Dallas. But it's funny how many little followers she picks up. It's been this way since she was a toddler. Other kids become fascinated with her, with her boundless energy and her strange non-word speech and her purple hair. Just now she came running over to tell me something (and honestly, I had no idea what), and no fewer than four kids were hot on her heels. She's like a little guru, or an unearthly creature.
March 12, 2006
Gig
My wedding shoot in Austin went very well, I'm happy to report, with no gigantic tragedies or important shots missed or drunken guests telling me what a crappy photographer I am. Everyone was super cool and I had a good time. If every wedding I shoot solo goes this smoothly, I'll be a happy guy.
And yeah, I know. It'll never happen. Bridezilla is waiting in my future, I know it. But not this time. This bride was fun and relaxed and friendly and even sought me out and talked with me for like half an hour after the reception as I copied all the photos onto my computer. Even when you're one of the hired hands, there's nothing like being chatted up by the bride to make you feel fancy and swell.
I'm heading back to Dallas shortly, and I'm actually feeling okay. I was worried about yesterday, but I actually think that all the running around and being Action Photo Guy for three hours did me a lot of good.
Wait a minute. Are you telling me that exercise may actually make me feel better? Pish posh on your crazy new age philosophies.
And yeah, I know. It'll never happen. Bridezilla is waiting in my future, I know it. But not this time. This bride was fun and relaxed and friendly and even sought me out and talked with me for like half an hour after the reception as I copied all the photos onto my computer. Even when you're one of the hired hands, there's nothing like being chatted up by the bride to make you feel fancy and swell.
I'm heading back to Dallas shortly, and I'm actually feeling okay. I was worried about yesterday, but I actually think that all the running around and being Action Photo Guy for three hours did me a lot of good.
Wait a minute. Are you telling me that exercise may actually make me feel better? Pish posh on your crazy new age philosophies.
March 11, 2006
Sick
I miss the healthy person I was a year ago.
I'm impatient to become the person I'll be a year from now, when I have this under control.
Sorry, not having a good health weekend. I'll go back to being amusing next time.
("Wait, you were amusing before?" Shut up, you.)
I'm impatient to become the person I'll be a year from now, when I have this under control.
Sorry, not having a good health weekend. I'll go back to being amusing next time.
("Wait, you were amusing before?" Shut up, you.)
March 9, 2006
There will be snacks.
Tonight is my last night as music manager at The Monolith.
This weekend I am shooting a wedding, and this time I'll be shooting it solo, not as part of a team. I'll simply be the photographer, or as I'll be thinking it in my head, The Photographer.
And next Wednesday, I start my new job as Coordinator of Communications for the School of Architecture at the University of I'mnottellingyouwhere.
So while this hasn't been a great day (I had to cancel my diabetic nutrition class because it turns out that my insurance won't cover it, so I have to fight with them again, and some snotty little North Dallas kids were nasty to Schuyler), I am nevertheless feeling hopeful and excited about the future.
One of my favorite Andrew Bird songs, Tables and Chairs, describes the world after the collapse of financial institutions, when there will be no more countries or currencies. In this world, Bird says, we'll throw away our survival kits and be free. There will be tables and chairs, pony rides and dancing bears and a band. Best of all, he sings, "there will be snacks".
I like that.
This weekend I am shooting a wedding, and this time I'll be shooting it solo, not as part of a team. I'll simply be the photographer, or as I'll be thinking it in my head, The Photographer.
And next Wednesday, I start my new job as Coordinator of Communications for the School of Architecture at the University of I'mnottellingyouwhere.
So while this hasn't been a great day (I had to cancel my diabetic nutrition class because it turns out that my insurance won't cover it, so I have to fight with them again, and some snotty little North Dallas kids were nasty to Schuyler), I am nevertheless feeling hopeful and excited about the future.
One of my favorite Andrew Bird songs, Tables and Chairs, describes the world after the collapse of financial institutions, when there will be no more countries or currencies. In this world, Bird says, we'll throw away our survival kits and be free. There will be tables and chairs, pony rides and dancing bears and a band. Best of all, he sings, "there will be snacks".
I like that.
Here comes the devil
I have a musical confession to make today.
Do you know the old big band chart Sing Sing Sing? It was originally a Louis Prima song, but the version that everyone knows is the Benny Goodman arrangement, with that sexy tom-tom drumming by Gene Krupa that runs through it. You'd know exactly what I'm talking about if you heard it. You hear that drumming in some arrangements of Duke Ellington's Caravan, too.
Well, my confession? That style of drumming makes me crazy happy. If a song has it, chances are excellent that I'll like it. Love it, even.
One good example is the Old 97's song Four Leaf Clover, from their album "Too Far To Care". When the drums start up, I become totally fixated.
The reason I bring this up today is that I've got a new one that I've been listening to, from a jazz/cajun/whatever group down in Louisiana called the Red Stick Ramblers. (I've written about them before.) The song is called The Devil with the Devil, and in addition to those drums I dig so much, it features the catchy lyrics that the Red Stick Ramblers are known for, inasmuch as they are known at all.
So there you are. Red Stick Ramblers. Go get you some.
Do you know the old big band chart Sing Sing Sing? It was originally a Louis Prima song, but the version that everyone knows is the Benny Goodman arrangement, with that sexy tom-tom drumming by Gene Krupa that runs through it. You'd know exactly what I'm talking about if you heard it. You hear that drumming in some arrangements of Duke Ellington's Caravan, too.
Well, my confession? That style of drumming makes me crazy happy. If a song has it, chances are excellent that I'll like it. Love it, even.
One good example is the Old 97's song Four Leaf Clover, from their album "Too Far To Care". When the drums start up, I become totally fixated.
The reason I bring this up today is that I've got a new one that I've been listening to, from a jazz/cajun/whatever group down in Louisiana called the Red Stick Ramblers. (I've written about them before.) The song is called The Devil with the Devil, and in addition to those drums I dig so much, it features the catchy lyrics that the Red Stick Ramblers are known for, inasmuch as they are known at all.
So there you are. Red Stick Ramblers. Go get you some.
March 8, 2006
The elephant in the room
Schuyler has been flapping lately.
If you don't know what I'm talking about, arm-flapping is a behavior that is generally associated with autism and also with mentally retarded children to a lesser degree. Doctors believe that it is a calming behavior, a way to satisfy a need for constant movement and a compensation for the restrictive nature of their world, a place in which they are inexplicably trapped.
I'm not sure how it applies to Schuyler. She's not autistic. In fact, when you read the descriptions of autistic children, you find that whatever her monster might be, it's not very much like autism at all.
As for The R Word, it is so hard to get an IQ determination on a non-verbal child that it could still be years before we have an answer to that fun possibility, but all indications at this point suggest that Schuyler's delays are mostly communicative and not as a result of any significant retardation.
Nevertheless, the kinds of neurological disorders that kids like Schuyler suffer from are closely related and not very well understood, enough so that we can't discard any connections. Here are a few mostly unrelated facts that, considered together, seem to dance menacingly around the edges of Schuyler's future.
1. Between 80 and 85 percent of kids with Congenital Bilateral Perisylvian Syndrome develop seizures, usually beginning between the ages of six and ten. These seizures are usually fairly serious, sometimes even fatal, although they usually decrease in severity around the age of twenty or so.
2. Approximately 35-40 percent of children with epilepsy also suffer from some degree of mental retardation. Kids with MR and epilepsy have a mortality rate double of that of MR kids without seizures.
3. One in four autistic children will develop seizures.
While not much of this deals with Schuyler directly, it nevertheless brings up a troubling possibility. Could Schuyler's recent bout of flapping indicate the long-dreaded onset of seizures?
We don't talk about these probable future seizures very much. Almost not at all, actually. It's the elephant in the room. But it's a constant fear, one last ugly surprise that her monster is waiting to inflict on her. We have no idea if she'll get them, although the odds are not in her favor, and we have absolutely no way to know when they'll come or how bad they'll be. So our fears take over. Flapping, which might be simply her way of bleeding off some of her limitless energy, become a harbinger of menace.
I love Schuyler, fiercely. She is the joy of my life, even as she's also the sorrow. Happiness and sadness go hand in hand with broken kids, you can't separate them. She's mostly a happy, vibrant little girl, and while she gets frustrated at her situation, we do everything we can to take her burden and her sadness and make it our own. But when the seizures come, if they come, they'll pounce on her and turn her world inside out, and there won't be a goddamned thing we can do but watch it happen.
Sometimes the worst part of Schuyler's monster is the stuff it has yet to spring on her.
If you don't know what I'm talking about, arm-flapping is a behavior that is generally associated with autism and also with mentally retarded children to a lesser degree. Doctors believe that it is a calming behavior, a way to satisfy a need for constant movement and a compensation for the restrictive nature of their world, a place in which they are inexplicably trapped.
I'm not sure how it applies to Schuyler. She's not autistic. In fact, when you read the descriptions of autistic children, you find that whatever her monster might be, it's not very much like autism at all.
As for The R Word, it is so hard to get an IQ determination on a non-verbal child that it could still be years before we have an answer to that fun possibility, but all indications at this point suggest that Schuyler's delays are mostly communicative and not as a result of any significant retardation.
Nevertheless, the kinds of neurological disorders that kids like Schuyler suffer from are closely related and not very well understood, enough so that we can't discard any connections. Here are a few mostly unrelated facts that, considered together, seem to dance menacingly around the edges of Schuyler's future.
1. Between 80 and 85 percent of kids with Congenital Bilateral Perisylvian Syndrome develop seizures, usually beginning between the ages of six and ten. These seizures are usually fairly serious, sometimes even fatal, although they usually decrease in severity around the age of twenty or so.
2. Approximately 35-40 percent of children with epilepsy also suffer from some degree of mental retardation. Kids with MR and epilepsy have a mortality rate double of that of MR kids without seizures.
3. One in four autistic children will develop seizures.
While not much of this deals with Schuyler directly, it nevertheless brings up a troubling possibility. Could Schuyler's recent bout of flapping indicate the long-dreaded onset of seizures?
We don't talk about these probable future seizures very much. Almost not at all, actually. It's the elephant in the room. But it's a constant fear, one last ugly surprise that her monster is waiting to inflict on her. We have no idea if she'll get them, although the odds are not in her favor, and we have absolutely no way to know when they'll come or how bad they'll be. So our fears take over. Flapping, which might be simply her way of bleeding off some of her limitless energy, become a harbinger of menace.
I love Schuyler, fiercely. She is the joy of my life, even as she's also the sorrow. Happiness and sadness go hand in hand with broken kids, you can't separate them. She's mostly a happy, vibrant little girl, and while she gets frustrated at her situation, we do everything we can to take her burden and her sadness and make it our own. But when the seizures come, if they come, they'll pounce on her and turn her world inside out, and there won't be a goddamned thing we can do but watch it happen.
Sometimes the worst part of Schuyler's monster is the stuff it has yet to spring on her.
March 7, 2006
We all have something to say.
If you are interested in being an original person with a unique statement to make and you feel inclined to boldly attach your name (which is apparently A. Nonny Moose) to that statement, here's one that you might want to avoid since it has in fact been made before, on more than one occasion, by clever people just like yourself.
"Get over it! You don't hear Schuyler complaining, do you?"
Ha! Get it? Because Schuyler's a mute and can't speak! That's fucking hi-larious! I can't imagine why the human stain who came up with that one wouldn't want to sign their name to that comedy gold.
Here's the only problem. Schuyler actually complains from time to time. She doesn't open her mouth and say "Man, it sucks, not being able to talk." She also doesn't use her device to say anything like that, mostly because she's still at the developmental stage where she uses her device mostly to identify and question, not express independent thought. She'll get there one day, and if you think she won't at some point use her device to say "Wow, being a mute fucking blows," then you don't know Schuyler at all. Which of course you don't if you're simply an anonymous commenter who is simply trying to be a dick.
Schuyler gets frustrated. She tries to express thoughts that are too complex for her device, and when we don't get it, she sighs sadly or crosses her arms angrily or wails in exasperation. If you think her monster is worse than mine, well, you're right. If you think she never expresses frustration because of it, you're an idiot.
If Schuyler had a blog, what would she say? Well, she's six, so she'd probably just tell you that she's a pretty princess and if you make fun of her, she'll have King Kong kick your ass.
"Get over it! You don't hear Schuyler complaining, do you?"
Ha! Get it? Because Schuyler's a mute and can't speak! That's fucking hi-larious! I can't imagine why the human stain who came up with that one wouldn't want to sign their name to that comedy gold.
Here's the only problem. Schuyler actually complains from time to time. She doesn't open her mouth and say "Man, it sucks, not being able to talk." She also doesn't use her device to say anything like that, mostly because she's still at the developmental stage where she uses her device mostly to identify and question, not express independent thought. She'll get there one day, and if you think she won't at some point use her device to say "Wow, being a mute fucking blows," then you don't know Schuyler at all. Which of course you don't if you're simply an anonymous commenter who is simply trying to be a dick.
Schuyler gets frustrated. She tries to express thoughts that are too complex for her device, and when we don't get it, she sighs sadly or crosses her arms angrily or wails in exasperation. If you think her monster is worse than mine, well, you're right. If you think she never expresses frustration because of it, you're an idiot.
If Schuyler had a blog, what would she say? Well, she's six, so she'd probably just tell you that she's a pretty princess and if you make fun of her, she'll have King Kong kick your ass.
March 6, 2006
Unhappy Feet
Behold, Dr. Zen's Titan Diabetic Shoe! I do believe that this may just be the most horrible thing I have ever seen in my life. If you saw someone wearing that shoe, you'd want to know what sort of bizarre alien flipper they were hiding inside. And for $109, the Titan Gimp Tard Flipper Shoe does more than suck away your dignity. It drains your bank account, too!
I'm making fun of this shoe because it was one of the worst I found. The truth is, there are actually some that aren't too bad at all, including this semi-badass boot. (How embarrassing would it be to get your ass kicked by a guy wearing orthopedic shoes? Think about that before you trifle with the Rob.) Until Converse decides to tap into the previously underexplored hipster gimp market, this might be the best I can do. (Keep in mind that no matter how Frankensteinian these shoes may look, they'll be even more monsteriffic in a men's thirteen. Nuhr!)
The reason I'm even looking at these shoes is that I've been following up on why my feet hurt so badly. It's called Peripheral Neuropathy, and it's fun fun fun. Basically, it's a relatively common neurological disorder that results from damage to the peripheral nerves and affects a lot of diabetics, like sixty percent. The kind I have is called, delightfully, "painful neuropathy", because really, what are the chances that I'd get the kind that tickles?
The thing that all these shoes have in common besides high fashion is that none of them are cheap. I just got off the phone with my insurance carrier (my current one, courtesy of The Monolith). As I could have predicted, they do not in fact cover diabetic shoes, despite that I have both diabetes and feet, which would seem to be the qualifying factors, but what the hell do I know? Once I start my new job, it'll be a few months before I'll be able to change insurance, so until then, I'll look for other solutions such as inserts.
Truthfully, I'm not in a huge hurry to embrace the Way of the Gimpwear. I just want my feet to stop hurting so much, and getting my blood sugar within a normal range will help with that. Just call me Gimpy McStumbles until then.
I'm making fun of this shoe because it was one of the worst I found. The truth is, there are actually some that aren't too bad at all, including this semi-badass boot. (How embarrassing would it be to get your ass kicked by a guy wearing orthopedic shoes? Think about that before you trifle with the Rob.) Until Converse decides to tap into the previously underexplored hipster gimp market, this might be the best I can do. (Keep in mind that no matter how Frankensteinian these shoes may look, they'll be even more monsteriffic in a men's thirteen. Nuhr!)
The reason I'm even looking at these shoes is that I've been following up on why my feet hurt so badly. It's called Peripheral Neuropathy, and it's fun fun fun. Basically, it's a relatively common neurological disorder that results from damage to the peripheral nerves and affects a lot of diabetics, like sixty percent. The kind I have is called, delightfully, "painful neuropathy", because really, what are the chances that I'd get the kind that tickles?
The thing that all these shoes have in common besides high fashion is that none of them are cheap. I just got off the phone with my insurance carrier (my current one, courtesy of The Monolith). As I could have predicted, they do not in fact cover diabetic shoes, despite that I have both diabetes and feet, which would seem to be the qualifying factors, but what the hell do I know? Once I start my new job, it'll be a few months before I'll be able to change insurance, so until then, I'll look for other solutions such as inserts.
Truthfully, I'm not in a huge hurry to embrace the Way of the Gimpwear. I just want my feet to stop hurting so much, and getting my blood sugar within a normal range will help with that. Just call me Gimpy McStumbles until then.
March 5, 2006
Schuyler's take on the Oscars
Every time King Kong wins something, she stands up and claps and hoots.
Schuyler knows which one is her best picture. She's got no use for gay cowboys.
Schuyler knows which one is her best picture. She's got no use for gay cowboys.
Beedies for Dummies
Look at that helmet. I had to order it online to get one that wasn't decorated like an MTV ad or shaped like some sort of H.R. Giger creation. I'm all about the simplicity, especially since I'm riding this big Mister Rogers bicycle that doesn't exactly cry out "aerodynamic". Well, and really, neither does my general body shape. No reason my head should slice through the air with ease when the rest of me is putting up such resistance.
I toyed with whether or not my low-impact workout was even going to require a helmet, but if I expect Schuyler to wear one when we're out riding, then I obviously have to set my fatherly example. Also, I still have no idea what will happen to my body when my blood sugar gets weird. I know that when it spikes, my feet hurt, my vision gets blurry, and I get crazy zombie tired, almost to the point of passing out. Well, that's fun. I suppose a helmet is in order. Perhaps I should wear it all the time.
So right this moment, I'm at The Monolith, looking at a magazine called Diabetes Explorer: Type II Essentials. The dietary management section is fun, in that "makes me want to stick something sharp in my jugular" sort of way. Here's a quick list of common high ("bad, will kill you very quickly") and low ("not as bad, but it's still food, so eventually, you're fucked") glycemic foods.
The bad ones are soda, hard candy, white bread, potatoes, bagels, white rice (ah, my sweet sweet rice, I shall miss you so), pineapple, watermelon, cantaloupe (which of course I just ate a whole bowl of last night, shortly before leaving my body for a little whimsical flight around the ether), raisins, popcorn.
On the other hand, I can have peanuts, lots of citrus, milk and beans. Ah, the magical fruit. That's good news for me, not so much for the rest of you.
It also talks about how to read nutritional labels. "If dietary fiber is 5 grams or greater then deduct this amount from the total carbohydrate; next, subtract 1/2 of the total amount of sugar alcohol."
Oh crap. The Beedies requires math? I'm going to die for sure.
I toyed with whether or not my low-impact workout was even going to require a helmet, but if I expect Schuyler to wear one when we're out riding, then I obviously have to set my fatherly example. Also, I still have no idea what will happen to my body when my blood sugar gets weird. I know that when it spikes, my feet hurt, my vision gets blurry, and I get crazy zombie tired, almost to the point of passing out. Well, that's fun. I suppose a helmet is in order. Perhaps I should wear it all the time.
So right this moment, I'm at The Monolith, looking at a magazine called Diabetes Explorer: Type II Essentials. The dietary management section is fun, in that "makes me want to stick something sharp in my jugular" sort of way. Here's a quick list of common high ("bad, will kill you very quickly") and low ("not as bad, but it's still food, so eventually, you're fucked") glycemic foods.
The bad ones are soda, hard candy, white bread, potatoes, bagels, white rice (ah, my sweet sweet rice, I shall miss you so), pineapple, watermelon, cantaloupe (which of course I just ate a whole bowl of last night, shortly before leaving my body for a little whimsical flight around the ether), raisins, popcorn.
On the other hand, I can have peanuts, lots of citrus, milk and beans. Ah, the magical fruit. That's good news for me, not so much for the rest of you.
It also talks about how to read nutritional labels. "If dietary fiber is 5 grams or greater then deduct this amount from the total carbohydrate; next, subtract 1/2 of the total amount of sugar alcohol."
Oh crap. The Beedies requires math? I'm going to die for sure.
"I didn't say she was crazy..."
As I begin my final week at The Monolith, I have two stories about two different customers I encountered on two consecutive days.
The first customer came into the department about an hour before the store closed. She was young and very attractive, in that North Dallas sort of way. She had blonde hair with highlights, a tan that was not even remotely natural, and perfectly perfect breasts for which I am pretty sure she had a receipt. Still, a hot woman is a hot woman, especially when she talks to you intensely and flirtatiously, which she was.
We got to talking, and she looked into my eyes the whole time, and when she asked about my tattoo, she took my arm to look at it and held it a little longer than necessary. I'm not usually a person who knows when I'm being flirted with, but it was pretty clear this time. I was having one of those, "Who, me? You talking to me?" moments. Then, after we'd talked a little about heath care (she apparently noticed my gimp tag, which is always quite the draw for the ladies, as you can probably imagine), she said, "Rob, I want to give you my phone number and my email address. There's something I want to show you."
Yeah, she really said that. In my head, I was composing a letter to Penthouse. "I never thought those letters were real, until the day a pretty blonde with big fake titties walked into my store..."
So for what reason do you think she wanted to share her personal contact info with me? She wanted to show me more about a personal healthy living philosophy that she subscribed to, one that changed her life and which would, if I tried it, heal me forever.
There's no easy way to say this.
She drinks pee.
She believes that urine is the purest form of our blood and contains nutrients and healing properties that can even help people with cancer. She drinks it, and she takes little pills that I gather are a concentrated form of, well, pee. If you prefer your pee powdered, there's a product for you, although I suspect it's not waiting for you at your local Whole Foods Market. (God help us all, I'm probably wrong about that.)
Now, I'm no scientist, and I haven't written to her to get more information, but as far as I understand, urine is a waste product. It's the stuff your body doesn't need or want. Pee is not, I truly believe, a beverage.
When she left, she wanted to give me a hug, and when she did, it was an unusually personal one, all close and tight and slightly longer than expected. And yet as male and doggish as I am, I still couldn't help thinking to myself, "God, I hope she doesn't try to kiss me with her pee-drinking mouth..."
Pee.
(How much do you want to bet that at some point in the future, I get an upset email or comment from a pee drinker out there?)
The second customer wasn't so involved or so scary, just startling. She came in inquiring about a certain artist, but when she started to ask, she drew a blank.
"I'm really sorry," she said. "I'm sort of distracted. I just had back surgery and it still feels really weird."
And without skipping a beat, she turned around and hiked up her shirt and SHOWED ME HER SCAR. It was all fresh and bloody and Frankensteinian. I have to confess, I was so startled that I almost forgot to be grossed out. Almost.
So yeah. I'm going to miss retail a little. Just a little.
The first customer came into the department about an hour before the store closed. She was young and very attractive, in that North Dallas sort of way. She had blonde hair with highlights, a tan that was not even remotely natural, and perfectly perfect breasts for which I am pretty sure she had a receipt. Still, a hot woman is a hot woman, especially when she talks to you intensely and flirtatiously, which she was.
We got to talking, and she looked into my eyes the whole time, and when she asked about my tattoo, she took my arm to look at it and held it a little longer than necessary. I'm not usually a person who knows when I'm being flirted with, but it was pretty clear this time. I was having one of those, "Who, me? You talking to me?" moments. Then, after we'd talked a little about heath care (she apparently noticed my gimp tag, which is always quite the draw for the ladies, as you can probably imagine), she said, "Rob, I want to give you my phone number and my email address. There's something I want to show you."
Yeah, she really said that. In my head, I was composing a letter to Penthouse. "I never thought those letters were real, until the day a pretty blonde with big fake titties walked into my store..."
So for what reason do you think she wanted to share her personal contact info with me? She wanted to show me more about a personal healthy living philosophy that she subscribed to, one that changed her life and which would, if I tried it, heal me forever.
There's no easy way to say this.
She drinks pee.
She believes that urine is the purest form of our blood and contains nutrients and healing properties that can even help people with cancer. She drinks it, and she takes little pills that I gather are a concentrated form of, well, pee. If you prefer your pee powdered, there's a product for you, although I suspect it's not waiting for you at your local Whole Foods Market. (God help us all, I'm probably wrong about that.)
Now, I'm no scientist, and I haven't written to her to get more information, but as far as I understand, urine is a waste product. It's the stuff your body doesn't need or want. Pee is not, I truly believe, a beverage.
When she left, she wanted to give me a hug, and when she did, it was an unusually personal one, all close and tight and slightly longer than expected. And yet as male and doggish as I am, I still couldn't help thinking to myself, "God, I hope she doesn't try to kiss me with her pee-drinking mouth..."
Pee.
(How much do you want to bet that at some point in the future, I get an upset email or comment from a pee drinker out there?)
The second customer wasn't so involved or so scary, just startling. She came in inquiring about a certain artist, but when she started to ask, she drew a blank.
"I'm really sorry," she said. "I'm sort of distracted. I just had back surgery and it still feels really weird."
And without skipping a beat, she turned around and hiked up her shirt and SHOWED ME HER SCAR. It was all fresh and bloody and Frankensteinian. I have to confess, I was so startled that I almost forgot to be grossed out. Almost.
So yeah. I'm going to miss retail a little. Just a little.
March 3, 2006
Gummy Bear
Okay, a lot of you have said it before, and I never completely agreed, but...
NOW she looks like a young Drew Barrymore.
NOW she looks like a young Drew Barrymore.
Festivals and Monsters
I didn't realize it until a friend pointed it out today, but apparently the Zilker Kite Festival in Austin is this Sunday. I'm really disappointed that I let this get away from us. For a year now, I've been looking forward to taking Schuyler back along with the Big Red Monster, and then I totally forgot about it when the moment came. I feel like I let Schuyler down a little, to be honest; I may have to take her out tomorrow for our own little kite festival.
This might be a little hard to explain. I love the time I get to spend with Julie and with my various friends, and also the time I spend with Julie and Schuyler together. It's when it's just Schuyler and me, however, that I think I feel the most at peace with what Britten, in his opera Billy Budd, refers to as "this grand rough world".
Things have become complicated for Schuyler and I both; I spent so long contemplating what her life will be like once I learned that she was broken. Now we're sort of broken together, and in a strange and wordless way, we've become closer. When we go out in our matching gimp tags, she always clicks them together before we leave, as if she's activating our wonder twin powers.
Schuyler behaves differently around friends and family and even when it's just the three of us; she constantly explores and pushes the edges of our group dynamics. But when it's just the two of us, something's different. I know that she doesn't understand that I'm sick exactly, but she senses that things are different, and she treats me differently as a result. When we sit on the couch together, she's leans her head against me. She kisses my hand before she goes to sleep. And when the three of us are riding in Julie's car somewhere, Schuyler has taken to asking me to sit in the back seat with her, where she can fake-whisper her secrets in my ear. In her own quiet, intuitive way, she's picked up on my need for some sort of reassurance. More than that, she seems to see that we've both got our own monsters now.
I also colored her hair purple. Maybe that's why she digs me these days.
Speaking of dramatic changes, Schuyler lost her other front tooth. Surprisingly, she looks much better than she did with just the one loose tooth hanging there. There's something to be said for symmetry, especially where teeth are concerned. She no longer looks like a bottle opener. She now looks like an old man, which is, I suppose, another thing we now have in common.
This might be a little hard to explain. I love the time I get to spend with Julie and with my various friends, and also the time I spend with Julie and Schuyler together. It's when it's just Schuyler and me, however, that I think I feel the most at peace with what Britten, in his opera Billy Budd, refers to as "this grand rough world".
Things have become complicated for Schuyler and I both; I spent so long contemplating what her life will be like once I learned that she was broken. Now we're sort of broken together, and in a strange and wordless way, we've become closer. When we go out in our matching gimp tags, she always clicks them together before we leave, as if she's activating our wonder twin powers.
Schuyler behaves differently around friends and family and even when it's just the three of us; she constantly explores and pushes the edges of our group dynamics. But when it's just the two of us, something's different. I know that she doesn't understand that I'm sick exactly, but she senses that things are different, and she treats me differently as a result. When we sit on the couch together, she's leans her head against me. She kisses my hand before she goes to sleep. And when the three of us are riding in Julie's car somewhere, Schuyler has taken to asking me to sit in the back seat with her, where she can fake-whisper her secrets in my ear. In her own quiet, intuitive way, she's picked up on my need for some sort of reassurance. More than that, she seems to see that we've both got our own monsters now.
I also colored her hair purple. Maybe that's why she digs me these days.
Speaking of dramatic changes, Schuyler lost her other front tooth. Surprisingly, she looks much better than she did with just the one loose tooth hanging there. There's something to be said for symmetry, especially where teeth are concerned. She no longer looks like a bottle opener. She now looks like an old man, which is, I suppose, another thing we now have in common.
March 2, 2006
Another Miracle of Modern Medicine
One of the nice things about having an online presence (I still hate that other word) is that friends out there in the world will send me cool links to stories about a new diabetes drug made from the slobber of Gila Monsters.
The funny thing is, as far as I can tell, the official site for the drug doesn't mention anywhere that it is made from gila monster drool. Perhaps I'm alone in this, but that's the fun fact that makes me want to learn more about it.
I love that in the midst of all the side effects warnings (the usual fun items like throwing up and diarrhea, cha cha cha), it lists "feeling jittery". I don't know why that cracks me up so much. I halfway expect to see a warning like, "Possible side effects may include the heebie jeebies, the creeps, and the willies."
It's another injectable medicine, by the way. Supposedly it's virtually pain free, so that's good news if you're naive enough to believe it. ("Inject this into your stomach! It doesn't hurt, I promise.") Maybe I should just get a gila monster of my own and let him bite me right before meals. It would make eating out at restaurants more fun.
"You don't mind if I do this at the table, do you?"
I'd name him Frank. I have no idea why. Well, whatever. Look at that photo. Tell me that's not a Frank.
The funny thing is, as far as I can tell, the official site for the drug doesn't mention anywhere that it is made from gila monster drool. Perhaps I'm alone in this, but that's the fun fact that makes me want to learn more about it.
I love that in the midst of all the side effects warnings (the usual fun items like throwing up and diarrhea, cha cha cha), it lists "feeling jittery". I don't know why that cracks me up so much. I halfway expect to see a warning like, "Possible side effects may include the heebie jeebies, the creeps, and the willies."
It's another injectable medicine, by the way. Supposedly it's virtually pain free, so that's good news if you're naive enough to believe it. ("Inject this into your stomach! It doesn't hurt, I promise.") Maybe I should just get a gila monster of my own and let him bite me right before meals. It would make eating out at restaurants more fun.
"You don't mind if I do this at the table, do you?"
I'd name him Frank. I have no idea why. Well, whatever. Look at that photo. Tell me that's not a Frank.
March 1, 2006
It's a shoe. In a tree.
Really, it's pretty self-explanatory. Julie and I went for a jog (for her) slash bike ride (for lazy old me) the other day, and we saw not one but TWO pairs of tennis shoes, tied together at the laces and thrown high into the trees. For the life of me, I can't imagine what that's all about. Perhaps it's a gang thing, in white bread North Dallas. Look for the cool kids in their socks.
One person posted on flickr that they'd heard it meant that there are drugs available in the area. Seing as how it's North Dallas and next to two different schools, that's probably a safe bet.
In unrelated news, did you know that having the Beedies makes you tired as fuck all the time? Why, neither did I! Isn't that AWESOME?
Fuckin' pancreas.
One person posted on flickr that they'd heard it meant that there are drugs available in the area. Seing as how it's North Dallas and next to two different schools, that's probably a safe bet.
In unrelated news, did you know that having the Beedies makes you tired as fuck all the time? Why, neither did I! Isn't that AWESOME?
Fuckin' pancreas.
Mystery Monster Soap
First, a little business. If you live in California and recently sent Schuyler some cool Tyrannosaurus soap, please drop me a line so I can thank you properly. I have no idea who sent it.
It's been an interesting two days. After giving my two weeks notice at The Monolith, I came home and celebrated by feeding the ducks with Schuyler and Julie underneath a breathtaking sunset. We all then went out for dinner and celebrated my new job. (Once again, Schuyler ordered her own food.)
I can't tell you how excited I am about this new job. Part of it comes from being about set with The Monolith. It's not a bad job, and I've enjoyed it for the most part, particularly in Austin. But the schedule was becoming increasingly inflexible and was making it hard to do freelance photography work. It also required me to be on my feet for about eight hours a day, which was beginning to become difficult. Tonight was brutal, and as I sit here writing this, my dogs are still barking, as those yokels are fond of saying.
But I'm primarily excited about going to work at an actual career-path gig as a writer and communications guy. (That's what the job description says, "Communications Guy". No, it doesn't really. It would be cool if it did, though. I'd get cards made up.) The person I'll be working for seems like a nice guy who isn't at all interested in micromanaging me, which will be a welcome change. The hours are much better, about half the time I work now with a slight increase in pay, and good benefits. I'll even get to use a Mac.
And I get to sit down. At this precise moment in time, that might actually sound like the sweetest part to me.
It's been an interesting two days. After giving my two weeks notice at The Monolith, I came home and celebrated by feeding the ducks with Schuyler and Julie underneath a breathtaking sunset. We all then went out for dinner and celebrated my new job. (Once again, Schuyler ordered her own food.)
I can't tell you how excited I am about this new job. Part of it comes from being about set with The Monolith. It's not a bad job, and I've enjoyed it for the most part, particularly in Austin. But the schedule was becoming increasingly inflexible and was making it hard to do freelance photography work. It also required me to be on my feet for about eight hours a day, which was beginning to become difficult. Tonight was brutal, and as I sit here writing this, my dogs are still barking, as those yokels are fond of saying.
But I'm primarily excited about going to work at an actual career-path gig as a writer and communications guy. (That's what the job description says, "Communications Guy". No, it doesn't really. It would be cool if it did, though. I'd get cards made up.) The person I'll be working for seems like a nice guy who isn't at all interested in micromanaging me, which will be a welcome change. The hours are much better, about half the time I work now with a slight increase in pay, and good benefits. I'll even get to use a Mac.
And I get to sit down. At this precise moment in time, that might actually sound like the sweetest part to me.