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.

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.

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.