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..."

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.

Stuck in the Middle with You

I pull into the Meijer parking lot at 2:30 and punch in on my Blackberry (yes, those still exist). For my Coke job, I'm on the road, going from store to store stocking shelves. The Blackberry is how we clock in and out and how get our route and keep track of what we've done at which location -- how many cases we pulled, whether or not anything is out of stock, etc. It's also our only contact with the office, by email (usually) or phone. I haven't been to the home office in months.

The first thing I do is check the coolers in the checkout aisles. These we stock with 20 oz. single bottles of our main products, and they're the first thing the higher-ups would check if they visited the store. Stocking the coolers is a little like having your towel with you in Hitchhiker's Guide:

A towel...is about the most massively useful thing an interstellar hitchhiker can

have.... For some reason, if a strag (strag: non-hitch hiker) discovers that a hitchhiker has his towel with him, he will automatically assume that he is also in possession of a toothbrush, face flannel, soap, tin of biscuits, flask, compass, map, ball of string, gnat spray, wet weather gear, space suit etc., etc. Furthermore, the strag will then happily lend the hitchhiker any of these or a dozen other items that the hitchhiker might accidentally have "lost." 

Basically, if the coolers are stocked, the supervisor will assume you've got everything under control and simply haven't gotten to the other bits yet, whereas if the coolers are a shambles this will cast something of a pall over the visit.

I say this as if such a visit has actually happened, which it hasn't. I also haven't seen any of my supervisors since training. But the effect is real; if I go into a store and  the coolers are in good shape, I immediately assume the stop is going to go well in general, even if that happens to not be true. Someone told me that sales from the coolers alone pays everyone's salary but the truck drivers, but this strikes me as a tall tale. Unless that includes vending machines; that might actually be plausible.

Today the coolers look fair but they need some attention, and I am just completing my perusal of them when the day guy catches up to me. A typical route is four or five stops with the same Meijer outlet as the first and last stop. That means that sometimes I run into the day merchandiser when our stops overlap.

He tells me that the bad news is they've cleaned us out of two liters and the coolers need to be hit, as I've already seen, but the good news is he's got the backstock all organized and ready to go. We talk shop and a little gossip and he heads out.

I head to the backstock area -- and it is nicely organized -- and load up an L-cart with 20 oz. singles, which we just call "cooler pop." I'm in the middle of stocking the coolers when my phone rings (my regular phone, not my Blackberry). It's not a number I recognize, so I just answer "Ted Troxell," in case it's a student (I'm teaching an online class) or something official. Usually it's a telemarketer.

This time it's not a telemarketer or a student. It's Will's teacher.

"Hi, this is ____ from Will's school." I'm immediately on edge: I've never gotten a call from the school before, but he's in summer school now and this is a different facility. She immediately puts me at ease.

"Everything's fine," she says, but she wanted to let me know that their resident MacGyver had fixed Will's wheelchair by using one of the ankle straps, which we don't use, to repair the lap belt, which was broken. She wanted to make sure that was okay, which had me wondering in what kind of scenario that wouldn't be okay.

Will's been on hospice care, which has been a great boon. An aide comes out to give him a bath twice a week and a nurse and social worker come out every other week. Most of his care is coordinated through this one service and they do a great job. He's managed to avoid any major hospital stays and is, in general, healthier than he's been in a long time.

There are some downsides. He has to show signs of regression in order to keep qualifying. If he makes too much improvement, he'll get kicked out of the system and we'll be navigating things on our own. It's the medical analog to the welfare recipient who gets a job and then no longer qualifies even though they still need the help.

Lately he's been having trouble with seizures and chorea (erratic involuntary movements) and even as we're trying to address those issues we're also secretly glad that this might be enough to secure his place in hospice a couple more months. It's an odd world to live in, where you simultaneously want your child to be healthy and to regress enough to qualify for hospice, precisely because it's hospice care that's doing the most to keep him healthy. It's not just a catch-22; it's Derrida's pharmakon inverted.

Another artifact of being on hospice is that we only get about two weeks of Will's medication at a time, so it feels like we're constantly running low. The idea is that a patient in hospice is dying, and not just in the Sylvia Plath/Eastern philosophy sense in which we're all dying. Ergo, they don't need a stockpile of drugs.

(It reminds me of a scene in Brighton Beach Memoirs. Eugene's mother sends him to the store for a quarter pound of butter. He complains that she sent him just that morning for a quarter pound, so why didn't she just have him get half a pound then? "And suppose the house burns down in the afternoon," she says. "Why do I need an extra quarter pound of butter?")

It also means that the insurance company won't cover both hospice and repairs to Will's wheelchair (it also won't cover prescribed modifications to the chair, like a headrest that would keep Will's head from flopping, or additional equipment like something to sit in besides the broken wheelchair). Dying people don't need to be secure in their wheelchairs, apparently. They're dying anyway, right? It makes a certain kind of sense, in a systemic corporate logic kind of way, but not on a human scale.

"Are you kidding?" I tell Will's teacher. "Of course! Thanks so much." We exchange pleasantries and hang up. It's just a wheelchair strap, but somehow I feel lighter, like for awhile I might be able to believe in humanity. It's the little things, I guess. I text Dawn to let her know, and then I have to get back to work.

These coolers aren't going to stock themselves.

A Day in the Life

"Will you feed Will?" she asks me.

"Of course," I say. "I was planning on it."

"Do you think we could crack the window open? I want to hear the rain."

"Sure," I smile. "I'll close it when I come to bed." I open the window and adjust the blinds so the air can flow.

"I can hear the crickets."

"Actually, they're probably peepers."

"What?"

"Spring peepers. Frogs."

"Oh."

My pedantic side is showing; who cares if they're crickets or frogs? I roll my eyes at myself in the dark.

I'm home a little early from my Coke job. My schedule is 2:30-11 but some nights are slower. I worry that I won't have enough hours to pay child support, but I also get paid mileage for going from store to store and that should compensate. Plus last week I worked a warehouse shift, which pays a lot more and I worked five hours of overtime.

It's time for Will's last feeding. Will is ten years old and has lissencephaly, a disorder in which the surface of the brain is smooth, lacking the ridges and crevices (technically gyri and sulci) which ordinarily characterize the brain's topology.

The result is, among other things, cognitive impairment and chronic seizures, requiring a cocktail of drugs which would kill most of us just to keep things somewhat regulated. The prescriptions all say x amount x times a day "for seizure control" but I'm learning quickly that "seizure control" is wishful thinking at best. It seems more like a dark joke that's not very funny.

Actually there's a cognate of gallows humor that's part of the discourse of special needs families. "Willy's talking back again," I'll say to Dawn, who'll reply something like, "Probably we're not spanking him enough." Or the time I told Dawn that I had to take his driving privileges away because he was burning out the clutch.

[Don't judge me; I just had that clutch replaced.]

I'm new to this. Not just to the procedures and routines, but to the life-world of having a special needs child. I'm sure it's cute to the veterans: the noob's first blog post. Isn't he adorable? I've tried to jump in with both feet; Dawn sometimes seems amazed that I want to jump in at all.

There's a lot of philosphizing and theologizing in these circles. A lot of theodicy. This makes sense; we're face-to-face with some of the most challenging aspects of life. We're tempted to wonder why, and to speculate, but I think we also intuitively know there's no answer. To me it's just life. Nothing more, nothing less.

In my case, I'm choosing this life, but I don't actually see it any differently than if Will were born to me. Ignoring for the moment the extent to which it feels like this life chose me –  a sentiment that is phenomenologically viable but metaphysically suspect – there was no cost/benefit analysis with Will on the minus side when I decided to start a new life with Dawn.

In fact, pardon the salty language but that's a shitty way to look at it anyway. Will was and is simply part of the constellation of things that make up this life, and I feel I belong here. So yes, I'm up at 10 o'clock feeding a child with a terminal brain disorder, and that's not tragic or admirable or even all that remarkable. It's just life. "Was that life?" Nietzsche asks at the end of Thus Spake Zarathustra – "Then once more!"

Will can't properly chew or swallow, so he gets fed through a gastric tube, or g-tube. There's quite a bit of terminology to learn here; Dawn was proud of me recently for using the phrase "rescue meds" in a Facebook post. I'm still trying to sort out the taxonomy of seizures. Anyway, his pills get crushed and suspended in liquid and delivered through the tube via a large syringe.

In another attempt at "seizure control," Will's on a ketogenic diet –  think Atkins –  and can't have the liquid drugs because most of them have sugar in them. This means crushing the pills in a mortar and pestle, pouring the powder into the syringe, putting the plunger in the syringe without the powder shooting out the other end (a rookie mistake, and yes, one that I've made), and then pulling water into the syringe to create the suspension.

This is then injected into the g-tube and followed by three more syringes full of water. This happens three times a day, each instance followed by two feedings an hour apart. In the morning, for instance, he gets his meds at 6, then feedings at 7 and 8. At night it varies, and on this particular night he needs one more feeding before we're done for the day.

His food, such as it is, is some sort of keto-friendly protein shake. Sometimes we just call it formula. It's supposed to be vanilla, but it ends up smelling like cake batter with a hint of Parmesan cheese. Like cake batter made with sourdough starter or something. Sickly sweet, with a hint of sour, and not in a good way.

I turn on Will's light and he's awake and alarmingly alert. I say "alarmingly" because a) he's supposed to be sleeping and has had some trouble with the whole day/night thing lately and b) because when he's alert (which is, on the whole, a good thing), feeding him becomes a matter of dodging fidgety limbs that seem precisely calibrated to knock your hand and splash his food everywhere.

It's like he waits for it. To feed him, we attach a plungerless syringe to the line and use it as a funnel for the food. He doesn't have much motor control, but his hands instinctively grasp, and he could conceivably grab the line and yank out his g-tube, which introduces a host of problems.

More likely, however, you'll have his arms contained with one of your arms, feeling clever with your other hand holding the syringe out of reach, and a knee will come out of nowhere in some kind of ninja move and douse you with formula.

Did I mention the sickly-sweet/sour smell?

I mean, theoretically, of course. It's not like this has actually happened to me or anything.

Ahem.

Tonight I'm onto him. I watch the arms and the legs and the feeding goes on without a hitch. I change his diaper, and give him a pad and a second diaper because he likes to gunnysack on us, saving it all up for a massive flood in the morning. We do a lot of laundry.

I situate him on his side, with his stuffed bear and a pillow between his knees and a blanket. "It's sleepy time," I say, hoping he'll take the hint and get some sleep. In the morning we'll start again with pills and the morning feedings, along with getting him ready for school. I'll have some papers to grade, and around 1:30 I'll get my route from Coke.

I check Facebook, and think about a snack but it's late and I'm not hungry. I brush my teeth, close the bedroom window and blinds, and get in bed.

"Did Willy get a blanket?"

"Of course," I say, and kiss her forehead. I'm not even sure she's really awake.

In about five minutes, I'm not either.

Drive My Car (A Reluctant Lenten Reflection)

In a gesture toward what I like to call "involuntary poverty," I gave up my car for Lent -- or rather, my car gave me up. There's a joke being played on the atheist forced to observe in this way, even if there's no one there to play it.

Lent, as a season of fasting prior to Easter, has been part of liturgical life longer than Christmas has, and for some reason, even though I'm not a terribly devout observer of Lent (or terribly devout in general), I like that it exists.

Eugene Peterson, in Reversed Thunder, writes that one of the good things about church is that it goes on without us. Whether we pray or not, people are praying. Whether we're even there or not, people are gathered. Somehow this is comforting. I feel that way about Lent.

I'm not sure why this is. My friend Daniel, a Catholic convert, told me, "I think it is interesting to see the attraction Lent has for my non-religious, atheist, agnostic and even Jewish hipster friends. Of all the things within Christianity that is culturally accessible I wouldn't have chosen Lent to be it."

I wouldn't have chosen to give up my car, either, and I do hope I get it back before Easter. About a month ago (before Lent began, actually) it broke down on the way out of Ann Arbor -- I hadn't even made it out of the city -- and has been stranded there ever since awaiting an engine replacement.

I'm learning to appreciate, however, the way this forces me into a discipline I did not choose. I'm walking more places, obviously, and to be honest I'm enjoying the exercise: except for some rudimentary (and sporadic) calisthenics, I don't work out. A 20-minute walk can do wonders for the otherwise sedentary, and I've enjoyed quite a few 20-minute walks.

It also throws me upon the mercy and generosity of others. The illusion of independence is shattered and I am forced to both ask for help from others and allow them to help me without the pretense that I'm going to be able to meaningfully pay them back. There's a certain paradoxical charity in allowing others to be charitable without trying to reciprocate (cue Derridean reflections on the gift).

I see this more generally as well. I'm staying during the week with a younger couple, and I try to be the model houseguest. I'm quiet. I'm neat. I also have an almost obsessive-compulsive need to be helpful: I do the dishes, or fold the load of laundry I find in the dryer when I do mine.

I sometimes notice, however, that these efforts also have the potential to subtly rob my friends of their opportunity to offer me hospitality. I'm not saying I shouldn't do them, but it introduces an element of payback. It hints at a calculus. Sometimes I duck out of the house on foot before I can be offered a ride; there's just a whiff of passive-aggressiveness about it.

There's a lesson to be learned here, and a balance to be sought. Maybe I'll find it. Maybe, on the other side of my reluctant Lent, I'll have grown in some sort of discipline of receiving charity.

Or mabye I'll just have killer thighs. Either way.