Suffering, Wholeness, and the Human Condition
Between the swelling and the tears, I admired Joan. I admired her kindness, her humor, her softness of voice. Hers was a courage which rarely abated, even when the edema burst through old scars, even when her children came and left to return to their slowly dissolving semblance of a normal childhood. There was something so powerful, almost harrowing, in her responses to those trials. They carried a spirit of crisis — a desire, a need, to do something that would alleviate this suffering, or at least make something beautiful out of it.
The rigid, pink band of fibrous scar tissue ran five or six inches along the outer side of Joan’s lower leg. Her terminal illness had all but halted the function of her kidneys, causing her body to swell with excess fluid, turning that pink band — a memory of previous sufferings — into a distended, translucent-pink mountain range. When diuretics and pain medications were exhausted, the only solution was to stick a needle in that watery ridge and draw back the syringe. Yet it was only a temporary fix: for all their warmth and skill, the nurses could not stave off time.
On the day of our first meeting I, a hospice volunteer, sat on the chair next to her, asking if she might like company. “Sit down,” she told me, with the warmth only a mother can give. “Please, please come.” Wearing a wearied but sincere smile, she introduced herself and bade me do the same. I told her about my upbringing, my work, my intention to become a physician. She responded with intent and active silence, nodding her head and widening her eyes, taking genuine interest in the minutiae of my young and relatively comfortable life. I enjoyed talking with her, though I felt strange whenever the conversation moved toward my life goals, as if we were entering a realm, a country — the future — which only one of us would ever witness.
Our conversation halted when, in the middle of a vigorous nod, Joan felt another brief sting of pain. (Her hospice team worked round-the-clock to provide effective pain management, but it can be a precarious task to balance comfort and lucidity in dying patients, particularly those like who, like Joan, wish to retain their cognizance.) The accompanying silence hummed long enough that both of us had forgotten who was speaking, and what about. I could discern the cause of my own silence: my heart broke for this woman’s broken body. I wondered what life was like for her on the inside. Was she bursting with sorrow, like that scar above her ankle? Was the only option to drain, drug, and divert away as much of that pain as possible? Or was there room for hope, meaning, and wholeness for this dying woman and her family?
In the stilled silence, after taking a deep breath and cocking back her head, Joan opened her eyes and flashed her mischievous smile. Her eyes scrunched, the corners of her mouth turned upwards, and she chuckled with a deep and belly-wrought ah-ah-hah. I was perplexed. Here was a woman who should have had decades more to live. A woman who deserved to see her children grow up, fall in love, break their hearts, and make something beautiful of their lives. And here she was, stifled for a moment by an all-too-human pain, yet resonant with a deeper, more joyful frequency. What was it?
Or, put another way: what made her whole?
We humans are rather unique in the ability to contemplate not only our existence, but also its end. That is, the reality of our imperfection. That imperfection has engendered different responses across human history. The medieval Christian church, for instance, had a practice known as memento mori — literally translated, remember you will die — which aimed to bring peace, focus, even joy, from the regular contemplation of one’s mortality. Other cultures have been equally contemplative about human fragility, embracing more vivid reminders of their impermanence: costumes, festivals, and periodic un-interments of the dead.
But in the modern West, our response has been somewhat more avoidant. With the progress of public health and modern medicine — and, perhaps, social media — the culture at-large has placed an ever-tighter grip on youth, beauty, and vitality, casting age and death as the cruelest of pathologies. While a great many must still confront illness and disability far earlier than others, our culture has managed to avoid thinking about suffering and death as if they were — well, the death of us.
That avoidance is, of course, understandable. But in choosing to elevate the beauty, the health, the vibrancy of human life, are we missing something essential about the human condition? Is it not for good reason that the ancients — in their literature, their philosophy, their arts — were so enamored with suffering and death? Perhaps there is something to be learned from the ubiquity of these motifs, something about suffering and death which, paradoxically, brings a richer understanding of beauty and life.
We humans struggle with mortality, impermanence, and death. But we also struggle, even as we live, with the faltering of our own bodies. So when faced with illness and suffering — with the imperfections of these carbon-based water sacks — can we hold on to our meaning and flourishing? Or is wholeness dependent on the health of our bodies, our fragile and fallible physiologies?
These are neither simple nor abstract questions. How we structure our lives, how we respond to sorrow and joy, how we relate to the suffering of others — all these, and more, are tied to our view on what suffering is, what brokenness is, and what it means to be whole. For people of all ages and conditions, these are inescapable questions. If we are to look at life with both lucidity and wonder, both honesty and joy, we must find for ourselves the source of our wholeness.
For this reason, Veritas at Stanford will be hosting a discussion on May 22, 2019, between Drs. Ray Barfield and B. J. Miller, two physicians shaping our understanding of wholeness and meaning in the face of profound medical suffering.
Ray Barfield is a pediatric oncologist at Duke University, director of Duke’s pediatric palliative care program, and professor of Christian philosophy at Duke Divinity School. An author of novels, philosophical books, and academic papers, he has pursued his diverse endeavors with love — a love that sees far beyond his patients’ broken bodies — tying a scientific spirit and a philosophical mind with a Christ-centered heart. B. J. Miller is a palliative care physician at UCSF, a triple-amputee, and a leading figure on death, dying, and end-of-life care in the United States. With kind eyes and an unflinching empathy, he sees his unique suffering as “a variation on a theme we all deal with — to be human is really hard.” As the former director of the Zen Hospice Project, and a current advocate for better end-of-life care throughout the country, he has brought comfort to patients and families while garnering attention from NPR, Oprah, and the New York Times.
On the night of the event, Barfield and Miller will be joined by Dr. Lucy Kalanithi, Clinical Assistant Professor of Medicine at Stanford and widow of Paul Kalanithi, author of When Breath Becomes Air. Kalanithi will be moderating the discussion from her unique perspective as both a physician, and one who has watched her husband suffer from terminal lung cancer.
These three figures — coming from different specialties, backgrounds, and worldviews — will guide our Stanford community through complex questions of human brokenness, and in doing so, help us better understand what it means to be whole. They will focus not only on the common problem of suffering, but the ways in which their social, cultural, and religious views influence their responses to that suffering. For to ask where our wholeness comes from is to ask who we are, why we are, and how we are to live. Yet whatever the questions, we should not assume that Barfield, Miller, or Kalanithi will have invariably neat and concise answers. Indeed, I have found that trite answers have always paled in comparison to the wisdom of patients like Joan, patients who held on to a deeper love, a deeper joy, even as their bodies and minds were stretched and cracked by trials.
I had the privilege of witnessing such a love, such a joy, in that very first afternoon with Joan.
As the visit came to its close, Joan spoke glowingly of her children, her husband, and the lives they would lead. She spoke of the love pulsing through that hospice facility: never before had so many people devoted so much just to make her comfortable. These things alone, she said, were enough to make her smile. But just before I left, she mentioned, through humble and quiet eyes, a hope in a God who loved and cared for her no matter how broken her body, or how troubled her soul. This, too, could have been taken for a trite answer. But she spoke with conviction. She spoke as one who had suffered. She spoke with joy.
Joan died not long after, leaving behind the memories of her family and those who have had the privilege of caring for her. But above all she left the impact of a beautiful life — a life which remained, till death, the very image of wholeness.
Aldis Petriceks is a former research assistant at the Stanford School of Medicine, and now an incoming student at Harvard Medical School. He is passionate about narrative medicine; health care for older adults and the dying; and the relationship between suffering, identity, and meaning amidst medical illness. He also loves running, hiking, and conversations on philosophy and theology.Tags: beautiful, BJ Miller, death, healthcare, hope, hospice, joy, love, Lucy Kalanithi, medicine, pain, Paul Kalanithi, Ray Barfield, Stanford University, suffering, veritas forum