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.