Abstract
We are now asked to consider a universe to which beautiful children and villainous single cells that destroy them are of equal significance—or indifference.
John died last night, Tyler. I'm so sorry that you have to hear about it like this, in an email. We just couldn't keep his oxygen saturations up. We tried everything we could. I know how much you cherished John, and I wanted to pass on his family's message of gratitude. I hope that your next residency rotation is going okay. Thank you for being such an important part of his team.
Her words pierced through to my marrow, like the cold steel of a surgeon's scalpel. Sorrow gripped my heart and dragged me down into its murky depths. I had never loved a patient like I loved John! There was no relief, no release—there had never really been any hope for recovery, or (don't let anyone hear you whisper this heresy) a miracle. Had there?
We had spent hours at John's bedside, managing his ventilator, optimizing his steroids, trying to pull him through. I had been so certain that he was getting better! But as it turned out, my prayers had echoed through empty hospital halls. Had they fallen on deaf ears, or dead ears, like the dead ears of his cold corpse? Where was that corpse? Likely in some sterile refrigerator, stewing in formaldehyde or paraffin or god-knows-what other chemist's brew. Or maybe it was, even now, splayed open, gutted like a fish on the pathologist's cutting board, men in masks playing hide and seek with his vital organs. It's unlikely that his heart, or liver, or kidneys, are on planes to other parts of the world, like so many other newly-dead's would be. His cancer would have precluded that. Otherwise his big kind heart may have been hammering out 2+ brachial pulses to the arms and hands and quivering fingertips of some grateful girl in California with a “history of tricuspid atresia,” his kidney giving new life to uremic Jane, 78 years young and detached from her dialysis catheter for the first time in months. But not John's organs. No, John had cancer. No, John had had cancer. But he had been cured! A miracle! Months of chemotherapy and then a bone marrow transplant had killed John's cancer. Tragically though, they had also killed John. Killed him more slowly, perhaps. But they did it nonetheless. Cell by cell, membrane by membrane, those mercenary treatments had shredded his lungs like tender pieces of meat on a butcher's bloodied table.
I don't mean to be irreverent. However, in retrospect what we did to John in his last weeks of life feels grossly inhumane; and now, even the standard postmortem protocols commit an indecency as they play-out in my mind. I love John. I loved John. In fact, irreverence is the last sentiment I would ever have for John or his body. But this loving boy, this guiltless child of God, why did he have to suffer as he did? Medicine had promised him so much! John had believed that he would play college football, go to Comic-Con, and have the strength to kneel again at the pew… but those promises would all go unfulfilled. Instead, we would put his hulking teenage body, those wan eyes and sallow cheeks, that wry smile curling around the plastic tubing of his endotracheal tube through hell as he “raged against the dying of the light.” 1
The preacher in Ecclesiastes suggests that all our work, our toil, our grandiose plans for the future—to go to college, learn to scuba dive, marry our high school sweetheart—may all be a futile endeavor. In the end, we are promised nothing, for “What is your life? It is but a vapor, which appears for a little while, and then vanishes away.” 3 Two thousand years ago people would have wondered what family curse was behind John's disease; now we know that it is simply bad biology, a DNA stop codon where a start codon should have been. There is no deeper meaning behind John's evanescent life!
Yet this nihilistic turn does not deaden death's violent punch to the gut. In the hospital, we frequently take the opposite approach and attempt to imbue death with meaning. Rather than trying to simply sit and absorb the suffering of our patients and their families, we offer “He is finally at peace” or “He has gone to a better place”—often without returning one iota of hope to people grieving like John's parents, who prayed tirelessly for their son to be healed.
Sometime during the middle of the first century, the apostle Paul inquired, “O death, where is your victory? Oh death, where is your sting?” 4 Curiously, with the advance of science the apostle's words have taken an ironic turn. Death, where is your victory? To the early Christian church, these words were a reminder that death is not the end. But now we can conceive of a future where death is no longer feared—though not because of any sort of anachronistic belief system. Instead, it is science that will provide us with that once forbidden tree of life (in the puzzling form of shortening telomeres). Soon enough, we can begin to imagine, Western medicine will triumph, and the tombstone will be smashed to bits, like the archetypal curtain was torn asunder in Jerusalem two thousand years ago. Whether in three decades or three millennia, it is only a matter of time.
Still, this optimism does not remove the grief I have after hearing that John's lungs finally gave out, even after he was placed on extracorporeal membrane oxygenation. For although the ICU could bypass John's heart and lungs, it could not bypass his death.
And so here we are again, trying to find meaning behind the rush of emotion, the smothering sense of injustice that should haunt our sleep and wake us with silent sobs anytime an innocent child like John dies. But what right have we to feel that his death is such an injustice? Because if nihilism is correct and the Transcendent is mere mythology, then everything that makes Homo sapiens human—love, beauty, spirit—is a farce, a chimera emerging from electrified protoplasm and happy accident. We have no warrant for our outrage! Perhaps Matthew Arnold was correct when he announced that the world
But a paradox remains. The more we attempt to give a purely biological account of human life and thereby demystify the human experience, the less we can actually justify the searing sense of unfairness that we feel with a child's death. Yet why should this sense be any less fundamental to our understanding of what it means to be a human being? We want to believe that when John's life was cut short, a real injustice occurred! Interestingly, in the hospital, people pay tribute to this sense of injustice with otherwise peculiar claims like “He was just too young to die” or “That just wasn't right.” Yet as I have experienced firsthand, neither a religious nor a scientific framework—and many healthcare providers are well-versed in both—seem to have satisfactory answers when facing this kind of uncertainty and despair.
I am convinced that medicine must try to better articulate and engage in this painful and disorienting “liminal space.” Liminality is the state of tension or transition between two epochs of belief, between two ways of understanding and interpreting the world. In the liminal space, unbelievers curse at the sky with indignant rage, while the devout find their rote faith suddenly incompatible with the bitterness of reality. Trusted rituals of solace and sense-making go silent—and that silence can be deafening. This liminal space requires careful reflection, as it raises complex questions about transcendence and meaning that bare materialism* does not have the resources to answer. For although science tells us that John's death is simply the final off-switch position of the electric current running though his brain, there is a numinous, inarticulate voice that quietly avers—“There must be more to the story.”
And I believe that we all know this. When we see the wrinkled newborn, still sticky and stunned from birth, clinging desperately to his mother's breast, we know. When we stare into the hollow eyes of the suicidal teen, belly, wrists, and thighs scarred with the stigmata of broken families, self-loathing, and abject hopelessness, we know. And when I held John's swollen, clammy hand that last time before walking out of the pediatric ICU before he died, I knew. These things are real things. The transcendent will not be washed away by neuroscience. Evolutionary psychology will explain much, but it will never explain John away. And even if I hear my desperate cries for understanding echo back unanswered perhaps all is not lost.
When I walked out of the ICU on my final day in the unit, I paused outside of John's room. I heard the hushed voice of John's mother whisper into his ear, “In this world you will have trouble John, but take heart. For I have overcome the world.”
Goodbye John. May your rest be sweet, as you go gentle into that goodnight. †