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.