Pediatric Cancer, Job, and Euthanasia

Pediatric Cancer, Job, and Euthanasia

Humans of New York recently finished a series posting photos and stories from the Pediatrics Department of Memorial Sloan Kettering Cancer Center and it has been harrowing. Stories of children suffering through multiple rounds of cancer and treatment, of their parents’ exhausted anguish, of the doctors’ gambit of staying objective enough to do their job and empathetic enough to stay human. You can see the full spectrum of pain radiate out from a disease and through a whole community surrounding each patient. In trademark HoNY style, each vignette is poignant and at least a little hopeful, but the overall impact is just brutal.

The endurance instinct
These stories at first bring to mind Job cursing the day he was born after all his wealth was stolen, all his children killed in a storm, and his body left festering with boils. ‘May the day of my birth perish, and the night that said, “A boy is conceived!” That day—may it turn to darkness; May God above forsake it; may no light shine on it…for it did not shut the doors of the womb on me to hide trouble from my eyes.’ Job echoes the rather dour proposition in Ecclesiastes that the dead are happier than the living, but those who had never been born are the happiest of all. This world is so wretched with pain that it’s better to depart it and better yet to never enter it. But, these dark words seem so jarring and dischordant juxtaposed with the children at the heart of the hope-tinged stories HoNY filed, byline: Memorial Sloan Kettering Cancer Center, Peds Dept.

The truth is, not that long ago, many if not most of these children actually would have died very young, probably at their first bout with cancer, and so would have been spared much of their suffering. Were it not for medical intervention (itself a form of pain, as these stories attest), much agony would not have been. But, no! Isn’t there a gut-level instinct in us that says children shouldn’t be left to die? Of course there is and this instinct to protect our vulnerable is beautiful and good and true. We rightly resist the thought of new life ending at its beginning. HoNY very clearly documented the extraordinary lengths to which we are willing to extend suffering all for the sake of hope, not just for survival, but for glimmers of beauty deep in the dark valleys.

And yet, there’s a totally different story being told about the end of life. Something rather worrisome is bubbling to the surface in the culture surrounding disease and death among our elderly. 20 years after Dr. Jack Kevorkian first started the conversation, euthanasia is edging towards the mainstream, popping up as plot points in books, TV, and movies while also being boosted by crescendoing advocacy groups. This is not a movement about accepting the natural course of life. This is a movement about abruptly ending life before it can take its natural course. I find it troubling. What could be at the root of this dichotomy between how we approach suffering in our young and in our old?

Perhaps we see potential in a child, a long life stretching before them that we don’t see for an octogenarian. But, is the value of life measured only in its length? This thinking would run our days through a cold wringer of the actuary. There is something intrinsically important about a life that does not diminish based on how much living left to be done. We can begin to understand this when we think in terms not of the length of life, but of the capacity of life.

Back on the pediatric ward, one mother told a particular story that stood out. Her son, deep in a night made sleepless by the horrible bodily side effects of chemotherapy, hugged her tight and told her how happy he was. Happy because of the love he felt in his heart for this woman pouring herself out for him. How truly amazing that something exists in our world that can lift the spirit of someone who by all logic should utterly despair. Yet such deep, sacrificial love would simply not exist without the pain that conceived it, incubated it, matured it. This is a paradox: that our lives can be so fragile and prone to death and yet so indefatigable in our ability to generate beauty. And yet, like the best paradoxes, it’s true.

Dying in America
It’s no secret that growing old in the west can be a very lonely proposition. These days, we largely shut our old up and away from view in care facilities and hospital wards. Large parts of our waning years pass behind closed doors, cut off from community, even the community of family. Part of this is made possible by the atomization of our society. There are too many tributary factors in this trend to list, but here are a couple.

One, the intense efforts on behalf of governments and corporations to globalize the economy which, in the spirit of the ‘free’ market, makes it easy to move capital around on the face of the world, which inevitably leads to people moving from place to place chasing jobs. The turnover rate in our workplaces is matched by the turnover rate in our neighborhoods, which weakens the bonds we form with one another. Even the seeds from the family tree scatter further and faster than before.

Two, the inward-facing turn our entertainment has taken as prevalent electricity and technology make of the living room a kingdom, an seductive lure to keep us indoors and further weaken the bonds that might form between a young family and an elderly neighbor. Where the demands of our economy can spread families far and wide, the pleasures of entertainment can starve out any neighborliness that might grow up to compensate. I feel this with a particular pang as several elderly neighbors of mine have died in recent months and I wish I’d known them better.

We are offered digital communication tools to supposedly mitigate the effects of the physical distances we put between us while chasing a comfortable, technologically rich life, but I believe we will eventually feel the tepidity of such cheap stand-ins for real relationship. Though sadly perhaps not until we are old and cloistered away in a home with only a screen.

Scattering ourselves far and wide and often while retreating into our screen-illuminated dens has given us a chopped-up look at life. We no longer see the beginning and end of life all around us, and especially with death, this absence has cultivated a fertile breeding ground for fear. We no longer have many clear pictures of loved ones facing death with courage and we have lost our stomach for pain. We avoid it at all costs by severing ties with the hurting and numbing our own pain by any means necessary. This leaves us woefully unprepared when the pain becomes too acute to ignore, too close to send away. The rise of a euthanasia culture speaks to this loss in our cultural imagination. It also gives us the false impression that death is in our control and that we can somehow diminish our suffering by opting out of it at our leisure.

The curable disease
The old have so much wisdom to impart to us and any of their wisdom gained through suffering is deeply needed in our time. As a young man, this may read like I’m advocating for others to suffer in pursuit of some sort of masochistic cultural nobility. I’m not. I’m advocating for us to enter into the suffering of others to make it bearable. Livable. If we have abandoned our elders to the unendurable prospect of painful, lonely decline, then let’s not offer them a syringe, let’s offer them presence. Life is too precious to cut short at any stage. We think we are avoiding unnecessary suffering, but we’re not. The unnecessary suffering has already occurred. Euthanasia isn’t the cure to the pain of dying, it is the curable symptom of the fear of dying alone.

There is hope to the very end of every life, if not for painlessness or for more time, then for wisdom and love that reaches unimaginable depths precisely because it is so hard to do in the midst of pain. I’m saying that we should have just as much hope in our sick elderly as we do in our sick young. Each is precious, each draws out beauty that cannot even be named because it is so deeply hidden and only revealed in suffering. Life isn’t measured by its utility, it’s measured by its capacity.

Marriage Advice From House, M.D.

Marriage Advice From House, M.D.

On a recent episode of House, M.D. (and by recent episode, I mean an episode from October 2010 that I happened to be watching recently), a patient’s clearly naive husband went to House for marriage advice of all things. His wife had kept hidden from him a huge underlying mental illness and he didn’t know what to do next. Alas, House never was one for patients, much less their husbands and the good doctor was blunt and brief. Their initial exchange, though, turned out to have remarkably sound marriage advice.

‘This is not who I married.’
‘Of course she is, you just didn’t know it.’

To the point as always, House pokes his giant, cane-shaped pin into the bubble that we can somehow know someone through and through before we marry them and so expect no big surprises til death do us part. Marriage is a big change filled with big changes. Buying homes together, planning a family together, navigating the ups and downs of those plans going in unexpected directions, starting new jobs and leaving old jobs all the while having someone watching you handle each transition very up close and personal. Point being that life will draw our character out and not all of it will be a monument to our hardiness and moral fortitude.

But, you’re sill married.

Just because you don’t (and can’t) know everything about someone before you marry them doesn’t make it ok to suddenly throw the future of the marriage into question when something you don’t like surfaces. The problem isn’t that our spouse is flawed, the problem is that we thought we could get away with marrying only the parts of someone that we like. For better or worse, you have to marry a whole person with some mysterious depths. There may be some sea monsters down there, but it’s possible to love someone in such a way that the muck that life may dredge from the deep doesn’t occasion a time to ask ‘yes’ or ‘no’ about the future, but instead ask ‘how’?

The fruit of working through hardship in marriage rather than running from it is self-evident in any old married couple if we’ll look for it. Survive enough together and a 50- or 60-year old marriage takes on this unconquerable, bulletproof patina (which is good, because circumstances surely don’t get any easier as a couple ages and faces the decline of their health together). Far better, then, to figure out how to move forward rather than to fret over whether to move forward. Because that is, indeed, the person you married. You just didn’t know it.

A Light Switch

Over the past few months, I have seen tragedy visited upon some people I love. Losses unfolding, wholly unwilling, with a suddenness and a sequence that is painful even to know of, much less to live and bear. Sometimes, it seems grief arrives and compounds with what almost seems like a discernible pattern, one that feels nearly punitive or at least intimate in its meanness. Yet, this suspicion of a cruelty set loose in the world is met with almost appalled unbelief because we can’t imagine any sort of God who would lend their power to or withhold it from such hurt. And so pain becomes infuriating. We want an end almost as badly as we want an explanation.

Here, I am tempted to take a typically dour narrative, to say that grief is faithful to press us down into our limits and so confound the parts of us so comfortable with feeling in control, entitled to pleasure and reward. Some might call this a puritanical air, bleak and pitiless. There is, I think, a more helpful purity, though. Instead of a steady, crushing hand, what if we looked at our pain as a light switch, and not one that plunges us into temporary darkness, but one that douses us in that painful light as when someone flips on a lamp while we were still sleeping?

As the comfort of pleasant sleep resolved into a brightly lit room, we would see our world as it truly is, not as we dreamed it, nor as we dreamed our place in it. Pain is all too real and all too near. We are woefully uninsulated despite our best efforts. We may be able to put off some loss of comfort if we are careful with our money (though tell that to so many homeowners in 2008) or if we make all the right choices (though tell that the the magna cum laude graduate with $100k in debt and no way to use their law degree still wetly inked), but the real accosting pains—physical collapse, sudden rejection, death—are always pressing in, biding their time before they irrupt on our such-as-it-is-it’s-mine cultivated lives. In those dreadful moments, we are soaked in the plain light of truth: the most precious things are absolutely out of our control.

In trying to resolve the psychic dissonance of untimely pain, some people find themselves compelled to dismiss any idea of a transcendent God watching them as they bleed. The concept seems so contradictory as to be self nullifying and ridiculous. I say a fellow sufferer can hardly blame them. Hurt drives us into ourselves, or to continue the metaphor, hurt stands us up to face our self, wholly illuminated. There is no place in human logic where pain, especially pain upon pain with no chance to heal, can resolve into the picture of a compassionate God, to say nothing of a loving one. All the sense immanent to us demands the death of God. If we were looking outward at all, we were looking for a god like us, conforming within the extent of what we could understand (and by understanding, give assent). How harrowing to see nothing of the sort and to feel alone in a screaming solitude. And yet.

And yet, the same light by which hurt illuminates us also illuminates the world around us. If this were to reveal a God, it could not look like any god we expected. It would have to be a God able to hold at once a good compassion and our unremitting pain, not just as two like magnetic poles fighting to repel one another, but as a unity without division. It breaks the imagination. For it to be true, we would finally have to face a God who is godlike. Able to be true even as what we can only make sense of as contradiction, a self nullification.

This is the very image of transcendence, the indivisible necessity of a God worth the title. Of course, this is hideously uncomfortable because we suddenly see how far below such a logic our reason operates. Our pain reveals a terrible height. But, the light that engulfs us offers the opportunity to see not a god like us, but something so immense and mysterious we would have missed it, though it had been there all along. This, finally, is a God we could find exhilarating, truly invigorating to commune with. At the end of anger, indignation, and meaninglessness, I find that hurt leaves in me an appetite for this kind of God, one beyond all the immanent sorrow and dead-end logic.

The suddenness of deep pain reveals the great gulf between what we felt in our dream-like comfort and what we cannot ever unlearn about our precarious lives. Our reason can’t touch the bottom of this gap and, reaching in deep enough, we find that everything at hand becomes ultimately futile, an absurd blip we try to make as tolerable as we can. If, at the end of our logic, the chasm still yawns there in its absurdity, we have the opportunity not to reach in, but to step in. This is the leap of faith. This is the chance to discover that a God who makes no sense at all might be the best kind of God imaginable provided you can accept that his goodness and your hurt do not contradict though by all appearances a paradox. If suffering is to leave us with an absurdity, at least this is an absurdity incorporating the hope of goodness. At least this God makes of suffering a start, not a permanent end. Perhaps even a falling up.

Short Read: institutions and bigotry

This comes in response to a few essays I’ve read in the past couple of weeks.

If you can, with a straight face, talk about statewide corporate boycotts, high-profile cancellations, etc—all basically 21st century siege warfare—as legitimate tactics to oppose bigotry, if you can speak of using force to oppose beliefs you find distasteful, then perhaps the definition of the word ‘bigot’ has been lost. Or, perhaps literally everyone on earth is a bigot, but the word only sticks to beliefs and actions that are in the minority, or at least not your own. Either way, regardless of how righteous one may feel, using force in the marketplace and using propagandic labeling of to-you unsavory beliefs looks to me awfully akin to enacting legislation to hem in to-them unsavory beliefs. Self-righteousness blurs a lot of hostility.

Waging a culture war—which it still is, it doesn’t stop being so just because the side you’re on is winning—at an institutional level, be it that of the economy or of the government or even that of social media, is a fertile breeding ground for self-righteousness. Institutions can not be relational; they are by definition anonymizing, abstract fronts that conceal personal action behind the blank face of the institution. Relationships between actual people go a long way to defusing self-righteousness because only people can be so humble.

The most nauseous impulse I see on display is this push for conformity to a side. ‘You must assimilate into our camp wholesale if you agree with us at all, and our enemy is that camp and they can do nothing right.’ This attitude has been festering in our insanely litigious grievance culture for a long time. It puts a serious damper on our ability to disagree and stay friends by breeding, in either side, the fear of what might happen if we happen to be the one who’s out of step with the majority around us. Constantly vying with threat of social and economic violence is just no way for any of us to live, either as the aggressor or the harried.

Excerpt: the grace we are built to bear

While Our Man is stripped of the kind of hope he’d always known, the director, JC Chandor, never lets us escape beauty. His shots of the stillness, and expanse of the ocean, his gift of the silence of Our Man’s solitude—unspoiled by dramatic music or inner monologue—give even this disaster a resonant grandeur. The most affecting reminders of goodness come when Chandor shoots the raft from below, finding tiny fish and other sea creatures gathered in the sanctuary of Our Man’s raft. The images are electric, jolts of life in stark contrast to the endless austerity Our Man sees to the horizon. Even this ocean, harsh to a man, nurtures any life willing to depend on its provenance, built to receive it (which Our Man is not. His free will has lead him beyond the grace he was built to bear).

This excerpt is taken from All Must Be Lost or How to Live When Lost at Sea, a reflection on the 2013 film starring Robert Redford and a most unfortunate boat.

About a band that I love

About a band that I love

It’s hard to even think straight about this. Recently, two of the highest grossing touring bands in the country—one of which is a band I truly love—both pulled the plug on concerts in North Carolina on the grounds that a recently-passed state law placing explicit restrictions on public bathroom occupancy was so egregious that they felt compelled to act any way they could within their power to oppose and protest.

Solidarity and the absurdity of power
I can think of two motivations for Pearl Jam and Bruce Springsteen to cancel their shows. Either they find North Carolina to be so odious that they can’t even stand to touch its soil, or they’re making a power play to whack the North Carolina legislature into more agreeable shape. Both motives are senseless. On the one hand, finding North Carolina so odious could only be the product of a deep sense of solidarity with the people whom this law restricts. It is a total disintegration of solidarity, though, to express it by not being present. Surely showing up and encouraging your comrades is a far deeper gesture of solidarity. The Freedom Riders didn’t boycott the segregated south. They hopped on the bus and joined those they felt so akin to. And they probably had to buy lunch on the way. Solidarity makes a nonsense excuse for a boycott. Because a boycott is a power play at heart.

At this point of clear disagreement with the bands, one might expect a theological treatise in defense of the state law the bands oppose, but this is not the place for that. I will only observe that the transgender phenomenon, rooted in the broader culture of American sexuality, seems to me the result of taking liberty to its furthest individual limits. Each single person, in their choices, which is to say in their minds which are the seat of choice, is presumed in control of every aspect of their identity such that not even something as once unequivocal as biology has any sway anymore. No circumstance must be received. The one single mind now has absolute will toward self-definition. My mind is actually boggled, then, to read that with a complete lack of irony, these two bands homogenize and write off an entire state—nearly 10 million people—in the name of this atomized individualism. It’s hard to even take it with a straight face. It is here that the absurdity of power plays begins to unravel.

What’s really going on in this situation is that there are two laws in our country—the law of the government and the law of the economy (of which the entertainment industry is a lucrative part). In North Carolina, those two sides are at war. And war has collateral damage, especially so because war tends to draw out the most dehumanizing tactics from all sides. Who is bearing the brunt of these cancellations, war tactics in this struggle for power?

Total agreement need only apply
It’s the people who run businesses around the venues who will lose out on serving food and drink to concert goers. It’s hotels that won’t fill rooms. But, most of all, it’s fans who have bought plane tickets and prepaid lodging (not to mention who likely paid exorbitant markups and service fees for their tickets which Ticketmaster, Stubhub, et al gobble up as part of their privileged stranglehold on the blistering online ticket market and which they surely won’t leap at the ‘moral obligation’ to repay). Of all the ways to take a stand, these two bands chose the bluntest, loudest, most divisive and destructive instrument at their disposal. Perhaps especially galling about the whole thing is the implicit (or in Pearl Jam’s case explicit) stance that these fans and businesses owe the artists the benefit of the doubt as they pursue their integrity. Here we see people, in all their diverse humanity, used as mere tools with which to make a point. ‘Thanks in advance for understanding’ must be based on the presumption that not understanding, much less disagreeing, are unimaginable. All good soldiers in the culture war have to accept the financial fallout of the activism of those few with clout even if they agree with the band.

The justification would likely follow, though, that Pearl Jam and Bruce Springsteen hope that by taking a stand, they will inspire North Carolina voters to democratically solve the dispute by pressuring and voting their legislature into shape. If that’s the case, then this is a power play aimed at the NC state legislature that really just smacks around ordinary citizens. The absurdity of power is that it will always justify its means with its ends. The terror of power is that there will always be further ends and when there are no more further ends, either there are no more people or there is no more freedom. Aggression in the face of disagreement is the very root of totalitarianism.

At issue here, in these few paragraphs, is not the rightness or wrongness of either the beliefs of the bands or the legislators. That’s an important debate to have, but it’s also an impossible debate to have in the current environment. Not on a large scale, anyway. Not on the scale of state boycotts and, yes, state laws. In order to have that debate, people would have to learn just how deep the roots of both systems of belief run (and run into each other). Such groundwork for productive talk takes patience and generosity. Instead, what you tend to end up seeing is something like two massive trees trying to do battle by only snapping off the others’ outermost branches. It’s easier and more visceral to just pummel one another in the public square. Coalitions and counter coalitions all duking it out in the marketplace, in the voting booth, in public opinion, and by any means available. Boycotts and counter boycotts, propaganda and counter propaganda, shouting down and shouting down. It’s hard to look at both sides of this divide and not see them throwing fits about the human abuses on the other side while tying themselves in linguistic and epistemological knots to justify their own. What I find so maddeningly obvious and so frustratingly ignored is the shortsighted stupidity of these kinds of power plays especially when the goal is some kind of civil or even rational society.

Excerpt: a fellowship of the redeemed

Excerpt: a fellowship of the redeemed

This is an excerpt of an essay called ‘In Community Group with David Foster Wallace’ that can be read in full at The Gospel Coalition blog.

Wouldn’t this be a great kind of church, a great community to be a part of? One filled with listeners who identified your pain as part of their own. One of such un-pretense that even the most bottomless confession is received with grace by people who all count themselves as the chief sinner. One of such consistency that the people live life together instead of merely gathering when they feel like they need it and scattering until the next crisis. This sounds like the kind of community that would give life. This sounds like the kind of community that is so thoroughly and humbly acquainted with themselves that they can see Jesus with a magnificent, binding clarity. This is not [high-achieving, upper middle class][1] Christianish-ity[2]. This is a true fellowship of the redeemed.

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[1] Edit thought up while driving to work, made post publication at TGC

[2] TGC editors calmed Christianish-ity down as ‘Christianity’, perhaps understandably not wanting the homophone sounded out by the double suffix on their blog. Though, that’s kind of the joke.