March 26, 2007

Eyes Wide Shut

Originally uploaded by Citizen Rob.
I was watching The Today Show this morning because it was far too early for actual quality programming. There was a segment called "Let's Talk Motherhood" (because remember, on The Today Show, we all live in Fred Flintstone's America, where dads are too busy hunting mastadons to worry about parenting), and one poor put-upon mom was bemoaning her momly life.

Laundry? Cooking? Pushing a wheelchair or trying to keep her aspirating, disabled child from choking to death when she eats? No, this mom's burden is a child who apparently talks too much.

"Last night my daughter was reading something, and she just kept going on, and on, and on, and I went 'Ugh!' And she said, 'What's the matter? Are you tired of my reading?' And I'm like, 'No', but it's just like 'Whew!'"

Whew, indeed. If you'd really like to gain my sympathies, by all means, tell me how your kid never stops talking. No, please.

As I've mentioned before, I belong to a polymicrogyria (PMG) discussion group. I almost never post, however, mostly out of a weird sense of guilt. I have yet to read a post by another parent with a child who is better off than Schuyler, whose PMG mostly affects her speech so far. I read stories by parents whose kids are in wheelchairs or who require a feeding tube just to stay alive. Almost all of them have kids who suffer seizures. Every so often, but not as rarely as it should be, one will post that they lost their child, to a massive seizure or a choking incident or simply a quiet death in the night.

The thing about these posts, however, is that they are almost never complaining. If they're talking about seizures, it's to compare medications and treatment strategies with other parents, or simply to calm another parent going through some new manifestation of their child's monster. I posted there the first time Schuyler choked, and I'm sure that I'll be back when her first seizure hits. But for now, I mostly just read, silently thankful for Schuyler's good luck, within her bad luck.

The parents who have the most cause to complain also have the most reason to understand how much worse it could be. I've had people ask that fun hypothetical question, "If you could take away Schuyler's monster, would you?" It's not entirely hypothetical; I spend every day trying to do just that. If I can't take it away, I'll settle for cutting it down to size, muzzling its snout and blunting its claws.

But if I could go back in time and chose whether or not to have her, knowing ahead of time the world we'd be entering? That's easy. The first thirty-two years of my life were rehearsal. I started living for real when Schuyler was born. The angst I feel when I put her on the bus in the morning or the pain of watching her struggle to communicate with another kid who then makes fun of her when she runs off to play, that's the pain of living and the price I pay in order to have the privilege of walking through the world with her. She's the best person I know, hands down.

When I see a mother complaining on national television because her kid talks too much, fucking READS too much, I realize how insignificant that price is. I don't think you have to have a broken child in order to appreciate how fragile and amazing life can be. I just think you have to be paying attention.

If you read the things I write about life with Schuyler and you feel pity for us, then I'm just a shitty writer. If you read me and find yourself, against all logic and convention, feeling a little bit jealous, then I've gotten it right.

March 25, 2007

My Review of the Battlestar Galactica Season Finale


Why did my favorite TV show just turn into Lost?

I also can't believe it's not going to return until my book comes out. They have some explaining to do when it does.

March 18, 2007

Blogging about blogging about writing? Fascinating!

Originally uploaded by Citizen Rob.
I wrote a long post over at Monster Notes, my bookety book crap blog, about my publisher's decision to assign a subtitle to SCHUYLER'S MONSTER and my thoughts on the direction I hope that goes. Go read it if you're interested in the process, especially if you think you might have some good suggestions. God knows, I've personally got the crappy ones covered all by myself.

It's been a quiet, quiet Sunday afternoon around here. Schuyler and I watched King Kong on HBO earlier, and as usual, she cheered for Kong when he delivered the smack to his dinosaur friends. Watching Kong together is one of Schuyler and my most sacred rituals.

Before you send me indignant hate mail, I realize that it's perhaps not the most appropriate movie for a seven year old. But one more minute of Noggin and I was going to end up with my picture on CNN, with helicopters circling the building.

Besides, I'm not convinced that those rules really apply to Schuyler. She's experienced uglier monsters than Kong.

March 16, 2007

"The Wrath of Khan" was taken

(Originally posted at SCHUYLER'S MONSTER.)

Back in December, when I participated in the Mediabistro "Blogger to Author" panel, I think I came across as sort of peppy and happy and naive. The book deal was like a magical thing, sneezed in my face by a unicorn or something. Considering I was there as Tragedy Dad, I was surprisingly pollyanna about the whole thing. My book was still being written, and I had no idea what the process was going to be like.

When we were all discussing the differences between writing a blog and writing a book, I didn't have much to contribute (although I did manage to jabber on like a Cowboy Woody doll with a broken string anyway). This week, I learned something that would have made a good point at the panel.

When you are writing a blog, you have complete control. For better or for worse, it's all you, the editorial decisions, the layout, everything. If your blog blows up in your face, it is a self-inflicted wound.

This week, I got my first taste of the collaborative process inherent in having a book published.

I received an email the other day from my editor at St. Martin's, letting me know that they needed to select a subtitle for my book and asking if I had any thoughts on the matter.

Now, I hadn't actually considered a subtitle. I always thought that SCHUYLER'S MONSTER was a title that worked really well on its own, steeped in allegory and mysterious enough to catch the attention of a curious potential reader. The thing I hadn't really considered was the reality of a world in which tens of thousands of books are published every year, a world where people are more likely to look at it and say, "Shooler's Monster? What's THIS crap?" before moving on to the latest Sudoku collection.

So yes, after a moment of twitchiness, I saw the necessity of a subtitle if I'd like to actually sell any books.

The tricky part is that the subtitle will ultimately be decided by St. Martin's Press, not me. And really, that's fine. The subtitle is a marketing tool as much as anything else. It tells potential readers, as well as reviewers and book buyers, what the book is about at a glance. In the case of reviewers and buyers, it does so in a situation where the cover art is not yet in place; galleys go out as text only. So St. Martin's will choose the subtitle, which is fine with me since they're the ones who sell books for a living.

My concern is that the people who will be making this decision will largely be people who haven't read the book. Again, that's perfectly reasonable; in a company that publishes over 700 titles a year, no one's got the time to read them all, or even most of them.

But in the case of SCHUYLER'S MONSTER, I'm afraid that without reading it, the people who make the decision on a subtitle may be imagining a very different book, one more suited for a Hallmark card or an After-School Special. I'm afraid of a customer buying "Schuyler's Monster: An Inspiring Story of a Family's Noble Struggle Against Blah Blah Blah", only to read it and think to herself, "Wow, he sure says 'fuck' a lot."

I sat down and wrote what can only be described as a scary, Unabomberesque manifesto this weekend, giving my editor my thoughts on this whole subtitle and genre classification issue. Poor Sheila. She asked for a few thoughts, and she got my Schuyler's Monster dissertation instead. She’s going to end up in the Federal Witness Protection Program before she’s done with me.

The most relevant part (as opposed to all the irrelevant stuff that perhaps I should have edited out in the first place) was this:

Simply put, I believe that the subtitle should reflect the experience of the family, not the disorder. The disorder gets the title itself; the subtitle should express a larger truth. The book is about a little girl and a family (specifically a father, which I think is somewhat unique among the books that are out there), and the experience they have. The father is a little lost and ill-prepared, and the girl is tenacious but without a voice. In the end, the father finds strength, but it is the little girl who perseveres and triumphs. She gets help from her parents and the schools and situations she ends up in, but her ultimate success comes through her tenacity and fearlessness.

The primary elements of the subtitle, then, could be more about the experience of being a father in over his head and more about a girl without words, rather than about a struggle against a disease. Because really, it has never been entirely about fighting polymicrogyria. Polymicrogyria won its battle before she was born, it won simply by existing. The story has been about taking what the monster gave her and finding her way and her voice.

Am I making sense? I don't see this as a parenting book or a special needs book so much as a memoir about a journey. Even if the book gets categorized as "parenting" (which I sort of hope it doesn't but which is WAY beyond my scope of experience or expertise), I hope that it gets marketed as a more universal experience: the world can overwhelm, the people selected to fight the big battles often feel like they are not the right person for the job, and they step up to the plate anyway because their actions determine the fate of those they love the most. And also, the smallest person can hold the deepest wells of strength, deeper ultimately even than those of the persons who set out to protect and save them.

(Schuyler as Frodo? Perhaps overstated, but you get the idea.)


But if this book carries the right title (and subtitle) and jacket cover, then hopefully it grabs the attention of people who may have neurotypical kids or no kids at all. The common experience of "holy crap, I'm not ready for this" and "the experts are telling us one thing, but we know better and are prepared to fight for it" and "that little person can't even talk, but she's tenacious and in the end can take care of herself and thrive"; THAT'S what I think the book should be about. I don't know if that's the book I wrote, but if it's not, it's because I wasn't a good enough writer, not because I'm wrong.

My friend Tracy pointed out that it is probably unrealistic that I can avoid the parenting pigeonhole, and she's probably right. But I wanted to at the very least put my thoughts out there, let them enter the discussion and then step away. I don't expect St. Martin's to say "Please, tell us more!" I expect them to make their decisions based on their experience as a successful publisher. I just wanted them to hear my point of view so it's there in the room.

As for my subtitle suggestions, I came up with a few, none of which I think are going to make the final cut. My favorite was:

Schuyler's Monster:
Odyssey of a Lost Father and a Girl Without Words

Although really, I sort of like "Mime School Dropout", too.

March 13, 2007


Originally uploaded by Citizen Rob.
Schuyler has her reality, and I have mine.

I was looking at my stats today and found this blog entry, in which a blogger dreamed that she came here and found my blog empty, except for a single word: "dead".

"I woke up crying," she wrote, "thinking Schuyler had her first big seizure and her little body couldn't handle it."

When I read that, I was stunned. I just sat here and looked at my screen silently for maybe a minute or two. I wasn't upset with the blogger; indeed, I'm touched that people care enough about Schuyler to allow her to get inside their heads and fuck up their dreams. And really, if something did happen to Schuyler, I'm not sure that I'd have the will to post much more than a single word. But in a single short entry, this blogger managed to land on my worst fear with both feet.

In my book, I quote Dr. William Dobyns as saying, "I can tell you I’ve only had two patients die from their seizures." He meant it to be comforting, I'm sure, but of course it wasn't. In my naivety, it hadn't really occurred to me that she could die from them.

But here's the thing. Schuyler hasn't had seizures, not a single one. According to Dobyns, they tend to manifest between the ages of six and ten, so she's just now entering the danger years, but I don't think she's ever had one, not even a small absence seizure. (When she was young, I thought she'd had them, but apparently they typically come in groups, not singly. According to Dr. Dobyns, Schuyler was probably just zoning out like little kids do. Well, little kids and me.) The odds are about 85-90% against her dodging seizures, but she's beaten the odds before.

So Schuyler goes through her life as happy as a butterfly, unaware or unconcerned about the thing that literally keeps me awake at night, this Sword of Damocles that she never notices but which I rarely take my eyes off of.

Julie feels the same way. We very rarely leave Schuyler with a babysitter, and never for long, in part because of our fear that it could happen, that first one could hit and Schuyler wouldn't be with her mother or her father or her teachers. It's silly, and we know it, but there it is. We don't even leave her with family very often. Schuyler is literally never alone, except when she sleeps. And I worry about it happening then.

People tell us that we should adopt Schuyler's carefree attitude. If she's not worried, why should we be? It has always felt to me, however, that her happiness has a price, and if we are to elevate her above fear and worry, we do so while standing knee-deep in it.

I love the person Schuyler is becoming. I love her fearlessness, and I love her punky attitude. I love that given a choice between girly pink and camouflage, she'll unhesitatingly wear both at the same time. Most of all, I love how she adapts.

We got a call from Schuyler's Box Class teacher today. The class was constructing sentences on their devices, and Schuyler was having a hard time finding the word "but". Impatient with the device's icon tutor, which shows the path to any word you type in, Schuyler stood up, laughing, and pointed to her ass. And then did a little "look at my ass" dance. She found her "but".

The biggest difference between Schuyler and her father? Her unflagging ability to take her monster and dress it up in clown clothes.

March 10, 2007

Courtesy of Robert Rummel-Hudson

This morning, I went over to Kerry's to take some photos of some old newspapers (and clean up the images in Photoshop so they wouldn't look like they'd been yellowing with age for ten years) for a Court TV story that was running later in the afternoon.

Later, when we watched the program, Catherine Crier Live (on which they got the name of Kerry's book wrong, d'oh), I got a fun surprise.

I don't really have anything profound to offer. I just thought it was random and cool.

March 8, 2007

Beloved M

Big punkass, little punkass
Originally uploaded by Citizen Rob.
As a parent, there's a thing that I think a lot of us secretly enjoy, even though we absolutely know we shouldn't. I don't know, maybe it's just me.

When we go away from our families for a few days, we find it guiltily satisfying when our kids freak out at our absence. I know, that's awful. But with apologies to Julie and my family and friends, there is only one person in my world who both gives and receives unconditional love.

I missed Schuyler like mad. Apparently she felt likewise, judging from the reports I got from Julie while I was away and also from the hug/tackle/leech-cling I experienced at the airport when I got back.

I did have a moment of genuine, real guilt concerning my trip to California, and it actually came yesterday, while I was at work. Schuyler's on Spring Break, and instead of hitting the beach and getting conned into appearing in some Mute Girls Gone Wild video, she has been at home with Julie. I get the impression that while their love for each other is as strong as ever, they have nevertheless had enough quality time together for a while.

Anyway, yesterday I got a call from Julie.

"You have to talk to Schuyler," she said. "She's crying hysterically."

"Huh?" I said with my usual eloquence. "Why, what's up?"

"She thinks you're not coming home again."

Well. Hello, I'm an asshole. Nice to meet you.

Anyway, I managed to calm her fears, and later today we're going to pile into Beelzebug, just the two of us. After I do a few things at the office, we're going to take a road trip.

Neal Pollack, author of the new book Alternadad, is going to be doing a signing/reading at Book People in Austin. I'm reading the book right now and enjoying it immensely. He's taken some heat for some aspects of the book, including an editorial in the New York Times by David Brooks that reads like an old man standing on the porch in his boxers and black socks, yelling at the neighbor's kids to stay off his goddamn lawn. I think Neal's being criticized not so much for the book that he's written, but for either the book he didn't write or the one that people like to think he's written. Taken on its own merits, Alternadad is an excellent read.

So if you're an Austinite and you're not doing anything tonight, check out Neal Pollack at Book People, and watch the crowd. You never know who might be lurking.

Hint, hint.

(Schuyler and I will be there. I'm subtle like a blow to the head.)

UPDATE: We drove to the office to take care of some business, and got delayed, and then it got warm outside, which is nice for a day of hanging out together but not so much for a three hour drive. Schuyler and I decided to stay in town and have a free day instead. So change of plans. No Austin trip for us today; stalkers will have to wait for the book to come out and kill me at a signing instead. (Buy my book first, please.)

Even the cliches were fancy

The transition from going on a cool trip to returning to regular life is always a little weird, but this time it felt even more surreal. Two nights ago, I was on a kind of photographic celebrity safari. Tonight, I'm cleaning goop out of my pug's eye.

So yeah. Goodbye, California dreamin'. Hello, eye boogs.

My feelings about California after my first trip are almost entirely positive, I'm happy to say. I met many very cool people, I saw lots of swell sights, and I think I made some promising professional connections.

I spent a day in San Diego with my old friend (and best man at my wedding) Joe, who took me to see a very topical play called The Four of Us. I've been dealing with the unexpected and occasionally shitty way that finding some measure of new success as a writer can affect old friendships, so I was really happy that he found this play and thought of me. Our friendship is solid, largely because for someone who never ever writes a damned thing, Joe's an excellent writer. If that makes any sense.

And San Diego? Almost weirdly beautiful, even with the crazy tall eucalyptus tree in Balboa Park (next to the Museum of Man) that I was convinced was waiting to kill me. Seriously. If you're from San Diego, I'll bet you know the one I'm talking about, in front of the Old Globe. Lit up at night, that thing is Treezilla. I suspect it pulled itself up from the ground and is making it's way to Dallas as we speak. Man oh man oh man. It seriously gave me the willies, I can't explain why. Evil evil tree.

The one thing I wanted to mention about Los Angeles is this: people there will give you a ride at the drop of a hat. My first night there, at the media thing (which I have been told is Not To Be Blogged, so just imagine my fabulous fun), a nice girl with a very cool VW Bug that runs on biodiesel (the blend of the evening? walnut oil!) offered and gave me a ride to my hotel after talking to me for no joke, like ten seconds. Then on Monday, I asked a waiter about getting on the right bus to get to my photo shoot, and he ended up giving me a lift on his way home. And THEN, after the shoot, a remarkable woman who is one of the directors of an amazing organization called Stop Prison Rape gave me a ride. Not once did I ask or even do that shifty "Oh, if ONLY I had a ride home!" thing, either. It was so nice that it was almost creepy, although that probably just means I'm a selfish ass. At least I'm self-aware.

So, Angelinos? You are very very cool, unless you drive a taxi. In which case, you are a vampire. Seventy dollars to get from LAX to Hollywood? Thanks for the lift, Nosferatu.

March 2, 2007

"I'm leeeeavin' on a jet plane..."

I'm sitting in the airport, leaving for LA in about an hour. I'm excited and nervous. Excited because I've never been to California, and nervous because I'm attending a dinner meeting thing with some cool, high-powered industry people. I'd like to make an impression beyond "some fat yokel". Although, you know, I'll take that if I have to.

I talked to Kerry on my way to the airport, and he's crazy busy with his book promotion tour. He did twenty-eight interviews and radio show phone-ins yesterday. I suspect that's a nice problem to have. He sounds exhausted and a little flustered, but to be honest, he also sounds happy. Good for him.

As for me, I'm happy to be getting out of town for a few days.

That's it. What, you were waiting for something meaningful?

Um, okay, a quick political observation. In recent weeks, both Barack Obama and John McCain have referred to the deaths of American soldiers in Iraq as a "waste", and both have quickly backtracked when patriotic eyebrows began wiggling menacingly across this great land.

Two candidates for the presidency are soooooooooo close to showing the courage to speak the truth about the war, but in the end, both hedged. I am both heartened and disgusted. As for the Democratic Party, which called on McCain to apologize for using the term mere weeks after Obama did the exact same thing, WTF? Knee-jerk, safe politics are going to serve you exactly as well in the next presidential election as they did in the last two. Show us something better, if you can. Some integrity and ideological consistency might be a good place to start.

I watched the Bob Woodruff story on traumatic brain injuries last week, and it rejuvenated all my anti-war feelings in a way that I hadn't felt in a long time. I don't think I'm going to be able to vote for anyone of either party who has supported this war, certainly not within the past two years or so. That narrows my choice of candidates considerably, at least as the field stands now. Who knows what will happen in the coming months?

Wouldn't it be funny, after my notorious Nader "Green Days of Shame" of 2000, if I ended up voting for Al Gore?

Okay, time to fly. See you when I get to the land of the Beautiful People. I assume I will feel like Jabba the Hutt the whole time.