October 25, 2011


Schuyler's monster stirs at times, like Schuyler herself in the middle of the night. We wait, and we watch, and we hope. We don't pray, because that's not who we are, but our hope feels a little like prayer. "Not yet," we ask the Universe. "Give her some more time to just be a kid."

In the midst of her busy middle school life, Schuyler is pestered by her monster. We think she may have had a seizure at school last week. And she had another choking incident recently, a rare event that probably only repeats itself at all because of her complacency, and ours. I can remember choking incidents from when she was much younger, and how upset we all became. Now when they happen, we keep our emotions in check, Julie and I. And Schuyler, too. Irritation, but no tears. She makes adjustments, as do we.

So it goes.

A few nights ago, a storm moved in, all flashing lightning and rolling thunder, and even a little hail. I was the only one still awake, so I went into Schuyler's room to check on her. She was fine, of course; Schuyler has inherited my love of inclement weather. She was awake, quietly watching the storm from bed. I asked her if she was okay, and she asked me to stay. We "oo"'d and "wow"'d for a while; she fell asleep soon after.

It was the first time I'd tried to sleep next to Schuyler in a long time, and certainly the first time since her last EEG. You may remember that the results were inconclusive, but of particular interest was this finding:

Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Lay next to Schuyler while she sleeps and you'll experience what her sleeping world is like, or at least you'll understand how unquiet that world must be. She moves, not constantly but with a startling regularity. Schuyler doesn't wake up, but I can't imagine her sleep is very restive. She doesn't seem particularly tired the next day, which is probably due in part to the fact that we make sure she gets nine hours of sleep every night. But I can't help but think that her body has adjusted to a life of Brain Pops, of tossing and twitching and kicking. I couldn't last more than about twenty minutes before I had to quietly sneak away. Schuyler never awoke. But she never grew still, either.

Schuyler lives a life of small compromises. She makes dietary choices because she knows that the wrong choice could kill her, but she does so casually, matter-of-factly, without drama. She drools sometimes, which is hardly a secret, so she wears wristbands everywhere she goes and wipes her mouth discreetly. But she chooses the kinds of bands that are worn by skaters and roller derby girls and makes it part of the "I'm a punky but regular girl" image she strives to project. Schuyler has a tooth that is seriously out of alignment, but braces would cause her drooling to go into overdrive, so we all choose the lesser of two social deaths. She proudly calls it her fang, without much in the way of self-consciousness.

Schuyler adjusts to her reality, the one with the monster, and the world tries its lumbering, ignorant best to do the same. Julie and I live with our fear for Schuyler's future and do everything we can to help her navigate the most treacherous waters. I'm learning to identify the issues and people who are important for Schuyler and this family. I'm learning to teach Schuyler to advocate for herself while simultaneously trying to protect her from self-serving voices that would use her story to further their own agendas. I'm adjusting to a world in which Schuyler's independence is growing, particularly where that independence concerns her relationship with Julie, and with me.

The world changes. Schuyler changes, and at the same time she doesn't. She remains the weirdest and most wonderful person I've ever known. I adapt to her changes, some of which are monster-driven and others just part of her transition from Little Girl to Future Schuyler, and of course the hardest are the ones that are both. Schuyler's brain is like no other in the world, and it is guiding her in ways that no one can predict. That's scary for us, and sometimes, she admits, for Schuyler. But I'd be lying if I denied that it's also breathtaking to behold, or that it's the greatest privilege of my life to be her father.

Schuyler's not like me, and she's certainly not like you. But if the world can adjust to the scary possibilities, of which there are many, it will be rewarded by the simple fact of her existence. I have been thus rewarded. And I will continue to be, in ways that neither you nor I can even begin to imagine.

October 22, 2011

Manly Man Stuff, for Men

The concerns and issues surrounding men's health don't get nearly as much media attention as they should, but it's probably our own fault. We don't generally like to talk about it. Surpise! Men are taciturn about our health, particularly when discussing how it falters. Read more about it in this month's Journal of Duh.

Every November, however, thousands of men join the Movember campaign and grow a moustache to raise money and awareness for prostate cancer and other cancers that specifically affect men. Last year, over sixty-four thousand people in the US raised over $7.5 million. That's a lot of cheesy moustaches.

This year, I've joined up with a group of bloggers and writers who will be growing some lip fuzz for the cause. I would be thrilled if you would go donate at my Movember page.

More importantly, we would love to have other men (or women; I'm not here to judge) join the team. Anyone who has ever seen the atrocity that grows on my face knows that I'm not exactly entering this thing as a ringer. When I grow facial hair, it generally turns out looking like I need to wash my face or possibly consult a doctor. Unless you've got a job as a television anchorman or a professional soup taster, you can probably devote a month of your life to growing an ugly thing on your face for a good cause. And fighting prostate and testicular cancer is undoubtedly a good cause.

So join up, guys. The man-bits you save could be your own.

October 17, 2011

The Road

I wrote a piece called "The Road" for my friends over at Support for Special Needs, on the topic of Schuyler (surprise!) and transitions. (Nothing about cannibalism or the end of civilization, alas. Next time, I promise.) You should be reading over there anyway, but if you're not, this is a chance to get your toes wet. I hope you'll stick around.

I kind of like this essay. It's one of those instances where I set out to write one thing, a straight-forward piece about the transition to middle school, and suddenly found that I had something very personal to share instead. Ah, narcissism. Is there anything you can't do?

October 9, 2011

"If I were you, I'd go punch someone in the face."

Because poor people still like to occasionally have nice things, I tried to get an iPhone.

Because big, weaselly companies don't like to play fair with poor people, I did not in fact get one.

First, a little backstory. A couple of months ago, on the day I was leaving for a conference in Utah, my silly little purple Blackberry died dramatically, complete with heat and a delightful burning smell. I immediately took it to my local Sprint store and was met at the counter by a young man whom we will call Sprint Weasel Prime, since it is with him and his actions that our story really begins and ends.

This Blackberry was never a good one. I purchased it in a pinch after the failure of my previous phone, and its only real selling points were that it was cheap, and it was purple. And over the course of a year of use, it really only excelled at being purple. Still, its death was dramatic, taking out both the battery inside and a second battery installed by Weasel Prime. It was frankly the only impressive thing it had ever really done. Well-played, crappy purple Blackberry. Well-played.

Weasel Prime went in the back and checked inventory or played Angry Birds or whatever they do back there, and after a few minutes, he came back and informed me that the purple Blackberry could be neither repaired nor replaced. The only solution was a new phone, but WOO!, there was a different Blackberry that I could get for free, using my upgrade, which had been sitting unused for a couple of years. Given that my choices were apparently to do this or carry a broken, occasionally smoke-emitting purple phone, I went with this option, the only one I was presented with. Our transaction complete, I bade farewell to Sprint Weasel Prime and went phonefully on my way.

Fast-forward to last Friday, when I went online to pre-order the brand new iPhone, available for the first time from Sprint. According to the Apple site, it would cost me about two hundred bucks.

Except no. Apple redirected me to the Sprint site, where I was informed that the new iPhone would actually cost me a cool six hundred and fifty real, non-boardgame American dollars.

You know why, and I should have as well. It was because Weasel Prime used my upgrade to replace my crappy purple Blackberry with a slightly less crappy one. (To be fair, as an excited Weasel Prime had pointed out, it IS a flip phone, which I suppose is good if you frequently butt-dial or like to pretend you're Captain Kirk.) As a result, my only options for getting an iPhone were to sell a kidney on eBay or wait until June.

The customer service representative I spoke to on the phone was incredibly nice and understanding; let's call her Huggy Weasel. She admitted that Weasel Prime was completely wrong to say that using my upgrade was my only option.  Under my service agreement (for which I'm sure I pay a little something something every month), I was entitled to a replacement phone, either refurbished or a close equivalent model, albeit probably not purple, alas.  She went further, too, admitting that the company was 100% aware that many of their sales associates in their stores were doing the exact same thing, mostly to get existing customers out the door and free up some face time for new, revenue-generating customers. Sadly, she concluded, there was nothing she could do for me. I would have to go back to the store and get them to make it better somehow.

"If I were you, I'd go punch someone in the face," she suggested.

I went to the store, although I was admittedly hoping that some non-punching options might present themselves. Once I started talking to the guy we'll call Mule Weasel, I began to understand why Huggy Weasel recommended fisticuffs.

Mule Weasel did not budge. He did not even admit that using the upgrade the way it had been used was wrong. He presented an immovable wall formed in equal measure of bricks made of "I dont know" and "We can't do anything for you here". If there was one emotion visible on his face, it might be deep regret that my name wasn't Robert Go-Fuck-Yourself, because that was clearly what he wanted to say to me.

My favorite moment? When the original Weasel Prime lumbered over, listened to our conversation and said, with a little touch of hurt in his voice, "When I used that upgrade, you actually thanked me!"

"Well, if I'd known you were screwing me, do you think I would have thanked you?" I left shortly after that.

My final conversation with Sprint took place as soon as I got home. I called and spoke to a number of representatives. They probably don't warrant names here because the only thing they really did was escalate me up the chain. They didn't do so quickly; by the time I made it to the third rep, I felt like I was crawling up the side of Mount Doom, on a quest to throw my fancy flippy Captain Kirk Blackberry into the fires from whence it was forged.

The last time I was put on hold, it was for, and I kid you not, FORTY MINUTES. I think any time you're on hold for longer than five or ten minutes, you start wondering if the customer service representative is just hoping you'll lose hope and go away. So yeah. Forty minutes.

Finally, I found myself speaking to the Final Arbiter of Customer Service Issues Weasel. The Final Arbiter Weasel repeated my story back to me (with a few passive-aggressive "You claim"s thrown in) and then presented my options. They were as follows, in no particular order: I could 1) cheerfully pay $650 dollars for an iPhone, 2) cheerfully wait until June and use my miraculously regenerated upgrade to get an iPhone, or 3) break my contract and cheerfully pay the steep financial penalties for doing so. He also made it clear that I had three further options, which could be best expressed by replacing the word "cheerfully" with "grudgingly" in the first three options.

One thing I've learned over the years is that when you're on the phone with a customer service representative, you have one little piece of power, just one: they are almost never allowed to terminate a conversation until you agree to do so. They can put you on hold for forty minutes, they can present an implacable wall of NO, they can be condescending, and I suppose they could just sit there making little fart noises while you talk. But unless you swear at them, you can almost always say whatever you want for as long as you want and waste as much of their time as you feel like wasting. That's a free tip, kids. You just learned something!

To finally get me off the phone, the Final Arbiter Weasel offered to email the district manager for Weasel Prime's store and let him address it however he saw fit. And here's where my favorite conversation in this whole story took place.

Me: Can you copy me on that email so I can follow along?

Final Arbiter Weasel: No, I can't do that.

Me: Huh? You can't copy me on that email? Really? Why not?

Final Arbiter Weasel: Because... the email's going to contain proprietary Sprint information.

Me: What? Your email about my case is going to contain secret information? What could that possibly be?

Final Arbiter Weasel: Um, it's the how the email is formatted that's proprietary.

So there you go. Aside from this call that I'm never ever ever going to receive from the District Manager Weasel, I think that's about where things stand now and forever. I can either go away quietly, or not go away not quietly, but it's pretty clear that despite the admission of Sprint's own representative that the original action taken by Weasel Prime was inappropriate and unfair, the official stance of Sprint is "Tough titties, customer."

Now let me be very clear. I understand completely that this is a very First World problem. I know that families face big problems every day that are much more important than this. But you know what? We're one of those families. Just because ninety-five percent of my blog posts are about Schuyler and our neverending quest to help her live a meaningful life in the face of real tooth-and-claws unfairness doesn't mean that when people behave like tools, I'm going to say "Well, this certainly doesn't compare with worrying about seizures or Schuyler's education or her future or whether or not she's going to be eaten alive by this grand rough world, so no problem."

Actually, I think for special needs parents, the opposite may be true. We spend every day of our lives waging battles that we mostly expect to lose or at the very best fight to a draw. And by every day of our lives, I mean right up until the day we die, when our last thought on this earth may very well be "What will happen to her now?"

So speaking just for myself now, when I'm confronted by forces driven not by invisible, implacable monsters but instead by flesh and blood humans whose only power over me is in what fucking PHONE I can use, do you think I'm afraid? Do you think I'm likely to give up quickly, or at all, when I'm treated unfairly by a sales associate in an ugly golf shirt with a corporate logo printed on his moob?

Do you think I'm inclined to stop fighting that little fight even when it's pretty clear that I'm not going to win? When the only thing I can do to address my grievance is to do my best to convince as many others as possible not to do business with a company engaging in unfair practices? Do I quit because it's a small fight, in the shadow of my family's larger ones?

No, I'm really not so inclined. And if that makes me a dick in your weasel eyes, that's probably true. But I'm the dick that the world has made me. Well, mostly.

See you in June, Sprint.


(Note: I would like to extend my deepest apologies to any weasels, ferrets, martens, ermines, minks, otters or stoats who may have been understandably insulted by my metaphorical representation of these particular employees and agents of the Sprint Nextel Corporation.)

"Dude.  Uncool."

October 2, 2011

Schuyler is my co-pilot

The internet hasn't been a very happy place lately. Here's a little something, just for fun.