Monday, January 25, 2016

Walking on Sunshine

I secretly love Monday mornings. I have to work, but not until the afternoon, and I have a list of things to do but I know they'll get done. I don't love Monday mornings more than I love, say, the leisurely weekend mornings spent snuggling and savoring our coffee, but I love Monday's place in the rhythm of the week, the sense of a fresh start -- even if it also means a fresh to-do list and a reminder of the things I put off over the weekend. Monday makes promises it can't always keep, but I appreciate its can-do attitude.

I commute on Tuesdays and Thursdays and they're long days, but on the other weekdays I like to take a quick walk once Dawn is off to work. It's chilly, but I like the cool air and the signs of life around the apartment complex: people warming up their cars or walking their dogs or hanging out on the stoop for a morning smoke. Sometimes a maintenance worker zips by on a golf cart, on the way to fix someone's garbage disposal or unclog a drain.

Today, despite the cool temperatures, the day feels remarkably springlike. The sun is shining and the wind can't quite make up its mind about how gusty to be. I've been noticing the days getting longer; the light is changing. This is good and bad because while of course it's pretty, I also have this inexplicable anxiety about spring days. They feel odd to me, like something's not quite right.

I've looked this up, and it's apparently a thing. My oldest daughter has it, too, and we compare notes sometimes. The best guess is that our generalized anxiety, however mild, leaves us somewhat overwhelmed by the expectations of spring, a kind of sensory overload. Spring is the overexuberant Labrador puppy to winter's tired, old, but otherwise undemanding tabby.

It's still too cold for any of that to hit me, though, and I just enjoy the morning. As grumpy as I can seem when pressed to weigh in on Big Issues -- to me, we're just a bunch of primates who don't actually know how to handle our oversized cerebrums, and this will probably come back to haunt us, so no, I'm not going to jump on your religious or political or philosophical bandwagon -- I genuinely do find life interesting. People, too, really. The world is no end of entertainment, and this morning it's got some good cinematography going for it. The mise-en-scene is working for me.

After my walk, I finish up the breakfast dishes, put in a load of laundry, and a take a bath. I love hot baths, and by "love hot baths" I mean "I have a bath problem." Like meth or heroin, it leaves me wrinkled, but unlike those things it's relatively cheap and doesn't rot my teeth out. I'm calling it a win.

After that, I'm off to tackle that to-do list. Even if there aren't any papers to grade (and they'll start rolling in soon enough), there are emails to catch up on, class announcements to make on Blackboard, errands to run. That laundry I put in earlier isn't going to fold itself, and I think I need to make an appointment for an oil change. There's plenty to do, and Monday is getting impatient.

For now, though, I might just open the blinds and get one more cup of coffee.

Saturday, January 23, 2016

Brandy (You're a Fine Girl)

Sometimes we shop for groceries like normal suburbanites -- you know, the massive coupon-laden stock-up run in which grocery shopping becomes an X-Games event. A lot of the time, however, we just shop day-to-day, partially for cashflow reasons and partially because it seems easier to just grab what you need for dinner and maybe a miscellaneous item or two.

It's pretty easy for Dawn to stop on her way home from work or for me to stop after I've dropped Gabby off at school. Plus, when I work for Coke I'm in and out of grocery stores all night, so I can just grab something we might have missed or something for the next day's dinner. We like to think it's a more "European" style, picking up the day's needs from the market, but probably Europe has supermarkets by now.

On this particular day, we decided that all we needed was some pork chops, so I stopped at Kroger after the school run. On the way in I chatted with some employees on break -- I knew a couple of them from my Coke job. We exchanged pleasantries and I got to hear a little store gossip.

Once inside, I heard one of the employees I'd been talking to get paged, so I stepped back outside to warn him: "You just got paged," I said, "Did you hear it?" 

"Who was it?" He asked.

"Hell, I don't know" I said, shrugging.

"Man or woman."

"Definitely a guy's voice."

"Shit," he said, stamping out his cigarette. His reaction told me who was doing the paging.

"Sorry bro," I said, and we both laughed as we headed back inside. "Is it just me," I added conspiratorially, "or is he the Grumpy Cat of managers?"

"Oh, he is. He brings all of us down."

"That sucks. Have fun," I said with a wink as he headed to his fate.

The packaged pork chops weren't doing anything for me so I headed to the meat counter, where another employee I knew was working. She recognized me and noticed I wasn't in my Coke uniform. "You shoppin', hon?" 

"Yeah," I said. "Mama needs pork chops." 

"Well, you better keep Mama happy," she replied as she packaged my order and we chuckled at that. I grabbed some protein bars that Grant likes for a snack and checked out.

As walked out, I noticed a woman out front smoking a cigarette. At first I thought it was an employee but they're not supposed to smoke there and she wasn't in uniform. I heard her ask a passing woman if she had a phone she could borrow. The woman refused.

I had just passed her and was not surprised to hear her ask me if I had a phone. "That bastard took my phone, my wallet, and my bus pass," she muttered. I wasn't sure what that was all about, but I figured what the hell, so I brought up the phone keypad and handed it to her.

I didn't really make eye contact, and I'm not entirely sure if it's because I didn't want her to feel uncomfortable (I didn't) or if I was already uncomfortable myself (I was). I looked away as she made her phone call because even though it was obvious I could hear her, it still created the sense of giving her some privacy.

She was twentysomething, a little shorter than me and bone-thin, with the kind of dirty blond hair in which "dirty" describes both the color and condition. She looked tired, which I found out later was because she was tired. She smelled of the cigarette she'd been smoking and maybe a little of alcohol. Something sweet, like bourbon or rum.

She called her dad. I thought she was calling for a ride but it turns out she was calling to get some number from him -- a phone number, I assumed, but maybe not. Another thing that had been taken from her, apparently, was "all my numbers." Again, I'm not sure if those were phone numbers or something else. It all seemed a little cryptic, but lots of things might when you don't have the proper context.

He gave her a set of digits and she made another phone call, which didn't appear to be successful. She called her dad again and I wasn't clear on the entire exchange but he was going to call her back.

On my phone.

"Do you have a vehicle I could sit in to get out of the cold?" She asked, completely matter-of-factly. She was neither rude nor deferential, just asking to sit in a complete stranger's car like one might comment on the weather or how badly the Lions were doing. We were literally standing in front of my car so I gestured to it and we got in.

Two things were running through my head. One was "If you give a mouse a cookie..." and the other was me trying to calculate the odds that this was some sort of scam. I wasn't in any particular fear for my life. It seemed too random and messy to be a scam, and I'd already reached the Glass of Milk stage, so we waited.

Her story, as best as I can gather from her phone conversations and her almost nonstop talking, went something like this: her name was Brandy, and sometime yesterday she got kicked out of a halfway house for reasons that I didn't catch but she insisted weren't her fault.

She ended up at the hospital -- again I'm not sure why -- and they were unable or unwilling to do whatever it was she wanted or needed, so she walked out. She ended up at a friend's house in the company of an alcoholic who, come morning, insisted on following her to Kroger where she needed to fill a prescription.

At the Kroger pharmacy, her alcoholic friend made a scene which may or may not have eventually involved him lying on the ground. This got him escorted out, but not before he filched her wallet, phone, and bus pass. In the ensuing attempt to get help from the customer service desk, she was asked to leave, which she also insisted was not her fault. It's a story that I'm certain is incomplete and not sure is reliable, but there she was, stranded outside of Kroger with nothing but a cigarette and a prescription of methadone.

Only now, because I'm kind of a sucker sometimes, she was warming up in my car waiting for a call on my phone. I felt trapped, and I felt bad for feeling trapped. I was painfully aware of the awkwardness of a married middle-aged man in a car alone with a twentysomething woman in the Kroger parking lot. At least it was the front row.

I was also painfully aware that I had no idea what her life was like and no real way to imagine it. I could only guess at the shit she'd seen, even that day, and marvel at how utterly composed she was. It was purely a matter of problem-solving for her: she needed information, which seemed to be numbers of some kind, and she needed to get in touch with whoever took her stuff (I know what you're thinking, but I didn't get the impression that the numbers she needed were simply the phone number of the guy in question, though there's a certain elegance to that). She kept rifling through bits of paper she had in her purse, but I didn't look to see what they were.

She also needed to get her things from the halfway house, and a shower and a place to lie down. There was no way in hell I could provide the latter -- the very thought initiated an anxiety attack on my part and would be difficult to explain to, well, anyone -- so I offered to drive her to the halfway house, for which she was grateful.

It was twenty minutes away, but the phone call wasn't forthcoming and I couldn't spend the rest of the day in the Kroger parking lot. I thought about just buying her a Starbucks so she could sit there and at least be warm while she waited for her dad to do whatever it was he was going to do (this did not seem to include picking her up, which would have been my go-to plan). But that would leave her stranded without a phone and without the belongings she left at the halfway house.

So we drove. On the way, I offered her one of the protein bars, which she gladly accepted but then said she was also dehydrated and asked if we could stop and get some water. I pulled into a gas station where she picked out a bottle of water, a cup of coffee, and a soda. While I was paying she bummed a cigarette off one of the other customers. I remember carefully choosing "credit" when I paid with my card so as to avoid her seeing my PIN, just in case.

She smoked about half the cigarette, then carefully snubbed it out so she could light it again later. We made our way to the halfway house, where I waited in the car as she gathered her things. This took longer than I thought it might, and I considered just leaving her there, or maybe just letting the staff know that I had to be moving along. They had said she couldn't stay but they would still have a better set of resources for what to do with her.

Just as I was ready to head in, she came out, with a couple of bags of belongings. There went my plan. Next, she said, she needed to go to the DHS to talk to her caseworker. She wasn't sure of the address and it wasn't coming up easily in a search, but she remembered it was close to a McDonald's. So I found the McDonald's and headed there, whereupon she directed me to the correct building.

"I'm sorry," I said. "I need to get moving, so this is the end of the line for me." I wasn't so much worried that this would end badly as I was worried it might not end. If you give a mouse a cookie...

"Oh, okay," she said. "Thanks so much for everything." She wasn't happy but she was completely polite. "Have a great day," she said as she gathered her things from the back seat.

"You too," I said, but the customary response felt hollow. I was dropping her off at the DHS with a fistful of belongings and half a cigarette. The chances of her having a "great day" were a little slim. But I knew that the DHS would have a waiting area and a phone and some knowledge of what resources Brandy might avail herself of.

When I finally got home, I called Dawn and told her the story. "Well," she said, "that was weird, but I'm glad you were able to help. You did what you could."

"I know," I said. "It was pretty surreal."

"Please tell me you remembered the pork chops."

Tuesday, November 10, 2015

He Ain't Heavy

The Friday before Halloween, Dawn sent Willy to school in his Marvel pajamas and a sign that said "I'm Super Willy, the Superhero." That's as good as it got. Neil Patrick Harris's family we ain't. Still, it had a certain Willy style and sass. It worked.

When a child dies, we often grieve not just for the loss of life itself but for the loss of potential, for all the things that child won't be or experience -- the prom, a wedding, their own children. Dawn remarked to me the other day that with Willy we're also grieving for everything he couldn't do or be in the first place. 

For all that we tried to give him, we couldn't give him the chance to make the winning goal in soccer, or get an A on his science project, or experience his first crush (though he was a bit of a flirt). His needs were such that we called it a win if we could just keep him fed, diapered, and properly medicated.

We did try to give him a personality. Since we had no way of knowing what or how much was going on inside that smooth brain of his, we ascribed things to him. We blamed him for things he couldn't possibly do, like eat all the Oreos or leave the toilet seat up. It was slightly less probable than blaming those things on the dog, but funnier.

We accused him of timing seizures to get out of doing things or just to make more work for us. "Anything for attention" I'd say, pretending to be exasperated. We accused him of being petulant in age-appropriate ways: "Tweens, amiright?" Another of my favorite jokes (and timing was key here) was "I know, right? It's like there's something wrong with his brain or something." 

We accused him of being grumpy with people he didn't like and of having an eye for the ladies. I used to seat him at the table to grade papers or play games. We narrated his life in the way that we wished he might be actually experiencing it, even though we knew that was probably not the case.

In light of this, it seems all the more appropriate that many of us imagine him, in whatever version of the beyond we're able to conjure, running and jumping and playing Nintendo because those were things he couldn't do in life. It's standard fare at funerals, and the images offer solace and comfort.

I don't want to make light of that. Those things are true in the best sense, in the way that they need to be true. If you thought or said or believe those things, thank you. It's touching and beautiful. I mean that.

But -- and I tread lightly here -- it doesn't quite work for me, and not because I have a less robustly kinesthetic view of what happens when we die. To me, that running and jumping and Nintendo-playing kid isn't Willy. I don't say that to be churlish or contrary or pedantic. It's a beautiful thought, but it's not the Willy I know.

Maybe it's because I came late to the party and never had cause to lament what his life might have been. I get that. I don't want to take anything away from someone else and how they need to process.

Nobody is glad that Willy had lissencephaly. It was not a gift. Neither Dawn nor I cop to a deity doling out special needs kids to parents who apparently don't have enough shit to deal with.

We never wanted Willy to be defined by his diagnosis. But he did have lissencephaly, and it was part of who he was for us. He was one of the "Liss Kids," an elite cadre.

The Willy I knew couldn't walk on his own, or even crawl or scooch down the hallway, so he had to be carried. Of course his parents scooped him up and carried him thousands of times before I ever had the chance, but that's what I remember: carrying him.

Willy had the reach that he had precisely because he had lissencephaly. Dawn and Todd made the connections they did because they were thrown violently into that world. A large chunk of the hundreds of people that paid their last respects to Willy we only new because of his disorder. 

Willy's superpower wasn't something he had in spite of his lissencephaly; it was his lissencephaly. That doesn't make it good or right or something for which we should be grateful. But it made him who he was and it made us who we are.

He needed us. Completely. He showed us, collectively, what we were capable of in the face of such abject need.

And he showed us it was okay to need. That's a superpower.

Wednesday, September 9, 2015

Workin' for a Livin'

It's just before 2am on a summer night and we shamble toward the entrance like a zombie horde. We mumble greetings to each other as we wait for the manager on duty to unlock the door and let us in. I've been unloading trucks at a major retailer, adding to what I like to call my "summer employment portfolio."

It's a world in which we're keenly aware of time. We're keenly aware of the fact that it's two in the morning, and most of us can tell you exactly how much sleep we got last night, a subject that lurks in much of our small talk.

We're also keenly aware of how many hours we've worked that week, because overtime is against company policy, even for crew leaders. This gets tricky on Saturday, which happens to be not only the end of the pay period but one of our busiest days.

It means that many of the strongest workers, who naturally end up working more hours, can't stay for the whole shift on Saturday because they're up against the 40-hour limit. Others "save hours" so they can help out. Either way, the attention to time is pervasive.

And we're aware of the time on each shift. We're usually scheduled for six hours, and if we're going to work more than that we have to take a half-hour unpaid lunch (another strictly followed policy), which leads to a kind of shorthand: "Can you take a lunch today?" means you're being asked to stay over, whereas "Let's break for lunch" over the PA means they expect the whole crew to stay over.

But you don't have to take a lunch, and if you don't, they can't make you stay. Otherwise, the manager on duty is in violation of policy -- which means, in the logic of corporate America, that you're the one in trouble. I'm not positive, but I suspect that you can't be forced to work past your scheduled time according to union regulations anyway.

The third possibility, "Let's go to break," indicates the whole crew is going on a fifteen-minute paid break, which means they're expecting the truck to be put away before the six hours are up and no one will have to take a lunch. Here, too, I think the union says you don't have to go home early, but nearly everyone does. There's an ebb and flow to how long the shifts run, and most people just roll with it.

It's not all like this. My other job, as a soft drink merchandiser, is a lot more fun. I actually like it. I'm relatively autonomous; I clock in and out on a phone they provide, and each night I have a route of four or five stores where I'll stock the shelves with whatever we've got in backstock. I also build displays and process orders.

No, I didn't build this, but it's awesome.
Being in and out of the same stores, I've gotten to know some of the managers and employees, as well as the other merchandisers. It's like a secret underground society of grunts on the front lines of American consumerism.

Even among vendors of competing products there's an easy camaraderie. We talk a little smack, but at this level there's far more commiseration than competition.

There's something I like about this world. It keeps me in shape, for one thing, but it's also pleasantly concrete: I'm not mindlessly pushing widgets through a chute, but I'm not trapped inside my head, either.

That's the Good Job. At the Bad Job, once the 2am shifts get going, I stop taking lunches so that I don't get held past the six hours. Sleep is too precious. The Good Job goes until nine or ten at night, sometimes later. I get home, grab a bite to eat, visit with Dawn for a bit, then take a nap.

At 1:15 I get up, go to the Bad Job, put in my six hours, take a nap, and get ready to head to the Good Job. Lather, rinse, repeat. I'm sleeping six or even seven hours in a given 24-hour period, but never all at once. I'm keenly aware of the time.

I don't make it more than a couple of weeks at this pace. I can't take the lack of sleep. It's like all I think about is when I'll sleep next and how much I might get. I'm not doing either job as well as I want to. I swear I can feel cognition slipping away. One day I call in sick and never go back.

There is no shame in falling before a greater enemy.

I needed to quit anyway, because it was time to start course prep. Compared to the horror stories we hear about adjunct faculty (the preferred nomenclature is "fixed-term"), I'm doing pretty well: I'm full time. I have benefits. I have a two-year contract. I get to teach some interesting classes. I've never felt treated like a second-class citizen.

There are some distinct advantages, too. I don't have to attend faculty meetings. Granted, this is because I don't get a vote, but let's accentuate the positive. I don't have to advise students or sit on committees. Any publishing I might do looks good, especially since I teach writing, but it doesn't need to meet the criteria for tenure.

I say all of that to put these next observations in perspective, and to make it as clear as I can: I'm not disgruntled. I like the university where I teach and I love the colleagues and students I get to work with. I feel, in general, pretty lucky.

But my base salary is still less than what I made 15 years ago as a music minister with a bachelor's degree. Anything I publish might look good, but with a 4/4 load (four classes each semester), I don't have time to write anything. I still haven't submitted a proposal for turning my dissertation into a book (there's a publisher mildly interested) and I owe a colleague a book review for a journal he edits. I'm spending time I should be grading papers revising this blog post (which I can't really put on my CV).

Again -- I want to make this very, very, clear -- I'm one of the lucky ones. I'm not on government assistance, partially because I teach extra courses (here and elsewhere) and I get summer jobs. I feel so good about being able to get them, in fact, about being able to make ends meet, that I forget to be scandalized by the fact that I need them in the first place.

It might just be some kind of neoliberal Stockholm Syndrome, but I like to work. I like, well, being useful. I like doing things. I like the feeling of having done a good job. In some ways, I feel like it speaks to my work ethic. I'm freakishly cheerful about work, and I'm reliable. I get things done.

I'm the quintessential cog in the machine, working to support a lifestyle of consumer distractions from work. My hard work is rewarded with goods and services that I pay for by working, things that someone provides me as part of their work, for which they reward themselves with goods and services paid for with the money they get from working.

The work I do in retail involves making sure people have access to the products they use to console themselves for (or distract themselves from) the daily grind of productivity, and the work I do as an educator involves helping students get the degree they need to join that daily grind.

Part of me feels like I should be affronted or outraged, but I'm not. Neither do I feel things are as they should be and that I deserve what I've got (good or bad). It just is. I applaud efforts at reform but I'm not holding my breath for a glorious revolution.

Truth is, I'm happy. I do my work and enjoy my downtime. My wife and I are consumers, like everyone else, but we're not big accumulators. We're not interested in surrounding ourselves with things -- apartment living makes this impractical anyway -- so much as we want to collect experiences, like trying a new pub or tubing down the river or just curling up to watch Netflix.

Maybe that's just respite from a world gone slightly mad but it's our respite, and being together makes it worth it. What should the world be like? At this point, I've given up trying to answer that question. I'm not that smart. All I know is that I've got a workday ahead of me, which I'll enjoy for the most part, but not nearly as much as coming home at the end of it.

Sunday, March 15, 2015

Mean Time Before Failure

I went to my first demolition derby when my oldest daughter was queen of the county fair. She had to attend certain events, which meant I got in for free. The demolition derby is like the deep-fried Twinkie of live entertainment: I can't say it's good, but that doesn't mean it's not enjoyable.

Two things struck me. One was the sheer noise, from the PA announcer to the sound of crunching metal to the roar of the cars themselves, most of which just had straight pipes poked through the hood into the exhaust manifold. Mufflers are for sissies.

The other thing that struck me was how much some of these cars could take before they stopped running. They were getting smashed into by other drivers deliberately trying to take them out, and yet for all the damage they often managed to remain functional longer than I expected. 

Teams of backyard mechanics patched the cars back together between heats. You could see the sparks from the cutting and welding torches they used in their automotive meatball surgery. Parts were replaced -- or bypassed -- to get the cars ready for the next onslaught. One of the winning cars could only go in reverse by the time the tournament was over, but it won regardless.

Most of us experience our cars as more fragile than that. The difference between "functional" and "street legal" is salient here, as is the fact that most of us don't have crews patching us back together after every trip. We're not smashing our cars into each other on purpose, for the most part, but our damage threshold is (practically speaking) much lower.

As a power-commuter (I make a four-hour round trip twice a week for my main teaching gig), I am constantly aware of the things that might go wrong and render me unable to get to work or back -- or worse, stranded somewhere in between. In the past year I've been pretty lucky, but that's after replacing one car and spending $5,000 fixing another.

The simple fact is that things break. Hard drives and other products are given something called an MTBF rating, which stands for Mean Time Before Failure (or Mean Time Between Failures, depending on the kind of system). Failure is a given; the only variable is how long before it happens.

This is true of everything. Relationships die. Families disintegrate. Civilizations crumble. Climates destabilize. Stars go supernova. I used to joke with my more theologically-minded friends that my eschatology -- my vision of the end times -- is "everybody dies." 

The body-as-machine metaphor is problematic for a number of reasons, but the body is nevertheless a complex system that will eventually experience the catastrophic failure we call death. "On a long enough timeline," says the narrator of Fight Club, "the survival rate for everyone drops to zero." 

I think about this sometimes when I'm feeding Willy or giving him his pills. He's got a brain disorder; there is something profoundly wrong with one of the most vital of bodily organs. This has led to the failure or at least the compromise of other systems -- and yet he is still very much alive. Dawn was told he might not make it past two years old, and we just celebrated his eleventh birthday. 

Willy's situation is, at least statistically, more fragile than most of the rest of ours. The next seizure could be the one from which he doesn't recover. The next feeding could be the one that his body stops assimilating in the slow spiral of degeneration. The next virus that gets passed around could be the one that ends in a lethal bout of pneumonia, to which he is susceptible. 

But it's a difference of degree rather than kind. We're all fragile in this sense. I could die tomorrow of an accident or an aneurysm, and Willy would outlive me. Or I could have any number of things go wrong and live on in defiance of the odds, as Willy has. Bodies are weird and unpredictable.

St. Benedict adjured his monks to meditate upon their own death. That sounds morbid, but it's probably good perspective. Everybody dies. Of course we have preferences about the timing, but beyond the statistical advantages of staying healthy and minimizing risks, we don't really get much say. 

In my own nod to the Buddhist recognition of impermanence, I tend to expect that things will break, that plans will go wrong, that my attempts to budget will get wrecked. That everyone dies. This isn't pessimism. I'm not negative or morose. In those moments I have to confess that, deep down, I'm probably a nihilist, I always make sure to qualify it: "but I'm the happy kind."

This doesn't make me a pessimist any more than my expectation that good things will happen makes me an optimist. Of course good things will happen. They have. They do. Ditto bad things. I like it better when the former outweigh the latter but again, apart from statistical advantages I have no control over that. 

If the universe doesn't owe me anything, then I can't be disappointed when I don't get it and I can't afford to be triumphalistic when I do. The good things that happen are either the consequence of things I hope I'm smart enough to repeat or they're random happenstance. Bad things are either the consequence of things I hope I'm smart enough to avoid or they, too, are just happenstance.

I'd like to beat the odds, but I might not. Not everyone can or the odds would be different to begin with. I'm okay with that.

Everybody dies.

Thursday, September 4, 2014

Lucky Man

"No, wait ... I'll tell you something," said Zaphod. "I freewheel a lot. I get an idea to do something, and, hey, why not, I do it. I reckon I'll become President of the Galaxy, and it just happens, it's easy. I decide to steal this ship. I decide to look for Magrathea, and it all just happens. Yeah, I work out how it can best be done, right, but it always works out. It's like having a Galacticredit card which keeps on working though you never send off the cheques. And then whenever I stop and think -- why did I want to do something? How did I work out how to do it? -- I get a very strong desire just to stop thinking about it." -- The Hitchhiker's Guide to the Galaxy
It's just after 6am when I pull into the gas station about a mile from our apartment complex. It's a two-hour drive to where I'll be teaching for the day and it will take a tank of gas to get there and back. I don't mind the drive; seasoned road warriors know there's a serenity to the open highway, and I have podcasts to pass the time when that serenity eludes me.

It's the kids' first day back at school, and I've left Dawn with most of the morning routine, except for Willy's morning pills and whatever we were able to do the night before. It's still hectic, and I'm on the road before the real chaos starts.

We spent Labor Day getting everything ready -- school supplies, clothes, lunches. We made lists and charts and schedules. We drilled the kids on their routines and responsibilities until we couldn't stand any more eye-rolling. Everything went off without a hitch, except Dawn got to work and realized she didn't pack a lunch for herself. Such is a mom's life.

Dawn and her ex moved to the same apartment complex after they separated, which means there are three of us around for parental support (and supervision). They've remained friends and he pops over now and then for a beer or dinner or to pick up some leftovers we've saved back for his lunch on the night shift. I joke that it's a very postmodern arrangement, and I've thought about pitching the premise to Fox as a sitcom. We just need a couple of catchphrases and some canned laughter.

Because of the move, however, the kids are too far from school to walk and outside of the district to be bused -- except for Willy, who gets bused regardless. That translates into three kids needing to get to three schools at three different times via two different means of transportation around three different work/sleep schedules. I'll spare the details, but the logistics are such that even with the three of us on task we still have to enlist the help of one of our neighbors. It takes a damn village.

The truth is, though, that things are going remarkably well. Amazingly well. Almost uncannily well, as if orchestrated by cosmic forces. Things have fallen into place with refreshing regularity and we're grateful, even if we're a little fuzzy on where such gratitude should be directed. This is common, of course -- what couple doesn't feel their love to be fated in some way?

I'll take well-worn clichés for fifty, Alex.

On the one hand, it does feel like that, even in a more general sense: we've both lived lives that have pretty much just worked out, beyond our ability to orchestrate them. I have applied to and attended exactly four schools in my academic career -- I figured I'd go somewhere and I did. I can only think of one time where I was granted an interview but didn't get the job, and it's hard to shake the feeling that in most cases just the right job showed up at just the right time.

This feeling is not uncommon. Daniel Quinn called his memoir Providence, and it narrates what is for him the uncanny process by which he arrived at his life's work. Kelsey Grammar, in his memoir, describes his own sense that the universe was somehow making his path straight.

I recently heard an interview with David Sedaris in which he confesses his belief that the right thing will come along if we are but patient and hard-working, and it worked for him: he kept plugging along writing articles until one day a publisher called him to see if he had a book they could publish. "I've been waiting for your call my whole life," he said. "I have one in my drawer."

The Tao te Ching adjures us to wait until the muddy waters clear and the right action presents itself. The Taoist concept of wu-wei describes a kind of flow, rolling with life's changes in the way that a good surfer neither fights the waves nor succumbs to them.

It's not hard for me to see each life as having its own genius, one that we are to lean into and go where it takes us without regret or triumphalism.

On the other hand, neither of us really believes this. We'll say it was "meant to be" but we do so with the irony of those for whom "meant to be" isn't really a thing. It's too hard to reconcile with a world in which there are brain disorders, tsunamis, and only one season of Firefly. Providence, if that's what we're going to call it, might narrate our experience but I shy away from it as a way of making sense of the universe.

Maybe it's all a matter of perspective, and I simply have a better attitude than some people. It could be that I just stumbled independently upon the power of positive thinking. Metaphysical musings aside, it's become almost axiomatic that positive people tend to experience the world more positively, and negative people more negatively, with some fuzziness as to which way the causality arrows are pointing.

But what about all those people in situations where positive thinking isn't going to help them? There are millions of people in the world in situations that are simply and abjectly cruel if part of a cosmic plan, and putting a positive spin on that isn't going to do them any good. If I take any part of my own experience, make it normative, and extrapolate from it a path to success and happiness, I'm a tube of hair gel and a good dentist away from being Joel Osteen.

No thanks.

More likely, it's a matter of confirmation bias and selective memory. We humans have a predilection for pattern recognition, even when the patterns aren't really there. Add to that some dumb luck and some underacknowledged (or even subconscious) machinations on our part, and it's no wonder our lives seem charmed.

In the end, "meant to be" is an affirmation, a way of calling something good. It's a way of saying we believe -- not in fate or cosmic forces, but in us, in our own future.

I get home around nine and Dawn has saved some salmon for dinner. "How was the drive?" she asks.

"Uneventful," I say. "Just like I like it. How was your day?"

"Let me tell you," she says, her smile weary but content, "the morning was crazy..."

Friday, July 25, 2014

Live and Let Die

It's Saturday, and I have to work, so I ask if there's anything I can pick up. Since I'm stocking shelves at grocery stores, it's easy for me to grab something on my way out.

"We need drinks for the pool party tomorrow," Dawn says.

"Okay," I say, "what should we get? Do you like piña coladas?"

It's an innocent question at first, but I immediately know where I want to go with it.

"Oh, sure," she says.

"And getting caught in the rain?" I deadpan.

"Absolutely," Dawn replies, without missing a beat. "But I'm not much into yoga."

I'm not into yoga, either, but I've been practicing something recently I call "bolus judo." "Bolus" refers to the way we feed Will, using an open syringe as a funnel and letting gravity do the work. Another option is to use a pump, but that option has been precluded by Dawn's discovery that she can't substitute her laptop charger for the pump's power supply.

The bolus feed is precarious, as I explained in an earlier post, because it involves an open syringe of formula in range of limbs akimbo. What I've discovered is that I can put the side of the bed down and swing my own leg up to block Will's arms. I'm not really pinning him -- my leg is draped over him with my foot on the far side of the bed -- but it does keep his arms out of the way.

Will's summer school is with the county school district rather than the city proper, so it's a different facility. It's also a much more robust facility for special needs, with a dedicated full-time nurse, a pool, great equipment, and a high teacher-to-student ratio.

These are the people who fixed his wheelchair, and his teacher regularly texts pictures of his activities and progress. This is not to slight the teachers and aides at the city school, who were fantastic; they just didn't have the same resources. We're looking at keeping him with the county school for the next school year and beyond.

The hitch is that the county school won't recognize the Do Not Resuscitate order, or DNR, on file for Will. Not without a court order. The director is sympathetic; there's currently a family pursuing such an order, and the school has helped them find an appropriate lawyer and has generally been cooperative and supportive. It's less a rancorous clash of wills than it is a collective attempt to jump through the proper hoops.

The decision to put a DNR in place is fraught and complicated. It means leveraging our ability to prolong life against the quality of that life as well as the life of the rest of the family. It's an alarmingly real-life variant of Lifeboat, involving not just real people but your own children. Put the most starkly, it requires sussing out the conditions under which you are willing to let your child die.

There's no clear line for this. There's a point at which prolonging life is inhumane, but that point is by no means obvious, and sorting that out is different for every family and every situation. There's no appealing to what is "natural" (a long-deconstructed notion anyway); in completely "natural" terms Will wouldn't have made it nearly this far -- but then, neither would many of the rest of us. "We're already keeping him alive by feeding him through a tube," Dawn points out.

To go through the arduous process of coming to such a decision -- consulting with doctors and family, wrestling with the ethics involved, starting into the abyss of mortality -- and then have that questioned a priori by a board policy can be demoralizing. For the board, it's a matter of liability; for us, it's a matter of parental rights.

Dawn and Todd didn't come to the decision to establish a DNR for Will lightly, and it is intended to represent their wishes in those cases when they can't be present to make those wishes known. Almost the only time Will is not with one of us is when he's at school, meaning that the one place a DNR is most likely to be relevant is one where it's not going to be honored.

It's the same ticklish, ironic structure as being on hospice. This seems to pop up everywhere. I'm reminded of Zaphod's reaction in Hitchhiker's Guide to the Galaxy the first time they use the Infinite Improbability Drive, whereupon they miraculously (or, rather, improbably) pick up Arthur and Ford seconds after the latter are ejected from a Vogon airlock: "Is this sort of thing going to happen every time we use the Infinite Improbability Drive?"

"I'm afraid so," comes the reply.

My understanding is that while the DNR is legally valid, it's not legally binding. It effectively establishes parental or guardian wishes but does not obligate anyone to follow those wishes. That, apparently, takes a court order, and the University of Michigan's Advocacy Clinic has agreed to represent us. They're trying to work out co-plaintiff status with the other family, otherwise we'll have our own case. Either way, we hope that it sets precedent for other families. Surely the board doesn't want to get sued every year.

It's especially frustrating because Will's previous school was receptive to the DNR without any legal wrangling. Again, that structure: the better facility for special needs is the one fussier about a legal detail common among special needs families, especially involving terminal conditions like Will's. Does this sort of thing happen a lot?

I'm afraid so.

The piña coladas were a bust, so I tried my hand at making a Bloody Mary. The end result? I won't be trading in the coffee and papers for bartending anytime soon.

But I'm going for gold in bolus judo.