Eyes and the End of Life: Why Spend Time With the Dying?

You notice strange things, staring into the eyes of another human being for minutes at a time. First your heart beats faster, you grip your hands into empty fists. The whole thing seems orchestrated, unnatural. But slowly, imperceptibly, the experience begins to shift. You now see and observe not only yourself, but the other person. Your eyes are both widened beyond necessity. One of you smiles, the other unconsciously capitulates. This state—a tense and amusing back-and-forth—runs on for well over a minute, a state of mutual embarrassment gradually replaced with fascination.

Then, if you make it long enough, the fascination moves outward from the back-and-forth, resting solely on the other person, who now occupies all your focus. You cease to feel your nervousness, your embarrassed heartbeats. These have been replaced by subtle flicker of the eyes staring back at you—left, right, left, right—as you realize this person can’t actually focus on both your eyes at once. And what about those eyes—are they green, or hazel? And the veins of the eyes, and the bags underneath, living artifacts of that person’s sleepless, undisclosed life.

All of a sudden—you couldn’t say when—you feel an immense comfort, a shameless acceptance of your norm-breaking gaze. You assume the other person feels it, too. But in reality, you have no idea about the other person. If anything, you have only learned something about yourself. For instance, that you feel the immediate urge to say something, anything, whenever you feel deeply uncomfortable. And that lesson comes through only because you cannot, in fact, say anything—only keep looking. So you stay in the silence, the oddly settled silence, acceptant of your inability to escape. And it is this acceptance which finally allows you to move past those observations—their self-facing thoughts, their fixation on the uncomfortable. There, past the endless mill of thoughts and discomfort and stiffening awkwardness, you are present. You are present with the human being before you: aware of, but not fixated on, their subtleties and nuances. Because of this presence you are able to understand, or begin understanding, the person whose eyes you have scrutinized. The person who has scrutinized your eyes also. Who has wondered what was passing through your mind, what nervous and embarrassed heartbeats were thumping through your thorax.

All this happens in a few short minutes—three or four, at maximum. Now imagine what might happen in hours, weeks, months, or years. That is what it means to be a hospice volunteer.

—–

A not-insignificant number of people have asked me, in the past year or so, why I spend so much time around the dying. They never put it that way, but that’s usually what they mean. And they ask this often enough that I have felt compelled to find new ways, new ideas, to express what hospice work means to me.

My original answer—which still holds true today—is one of deep moral conviction. Suffering and mortality, as I understand them, are universal human experiences, burdens which we are called to shoulder for others. I came to hospice not on any journey of self-understanding, peace, or fulfillment, but with a burning desire to live out my deepest values—to comfort the suffering in my own small way—or not hold them at all.

But like many of our most important endeavors, there is no single reason to serve in end-of-life care. Indeed, I have witnessed an inspiringly diverse collection of hospice volunteers in the past eighteen months: retirees galvanized to benefit society, even after their careers had ended; family members driven by the memories of loved ones; volunteers in their tenth decade of life, and those younger than myself. In all of this I have come to believe there is something inherently powerful, universally compelling, in end-of-life care. The question is not, therefore, whether end-of-life care is relevant to any individual member of a community or society. The question is: “Why?” Why might a person in our modern Western culture—one which pathologizes death; which places comfort and pleasure on sky-high pedestals—want to spend time with the weak, the sick, the dying?

I have already gestured towards my own reasons: human dignity, self-giving love, the reality of suffering. But when asked why someone else might want to volunteer in hospice, I take a different angle. I imagine end-of-life care not only as a fulfillment of sacred human values, but also a means of living the good life in our modern world. Ironically, this comes about through a rearrangement of our modern dispositions. Service of the dying asks us to embrace vulnerability, to run towards suffering, to cultivate the “don’t-know” mind. These social contradictions are, at first glance, stunning. But very much like staring into another person’s eyes for minutes at a time, they represent the tremendous gift that hospice care is, even to the healthy. Yet this is not a quick, transactional, or even concrete sort of gift. The gift which should drive any person to hospice care is a gift of openness, of radical vulnerability—the gift of being known.

—–

Susan (name and identifying features changed for privacy) was a kind and gentle woman, old enough to be my grandmother, with six months to live. A whole life’s narrative behind her, she now faced the concluding chapter, feeling seasick and unprepared. I remember our earliest visits, when I was a brand-new hospice volunteer. Having finished several weeks of training, I was both nervous and excited. More than anything, I was eager to fulfill those lofty principles which drove me to hospice care in the first place. So I gallantly, passionately, and most of all naively, walked into Susan’s room for that first visit, intent on solving her problems with wisdom and compassion.

“I’m going to die,” she told me in tears, minutes into our visit. “And I feel so alone.”

Silence. Utter silence. Armed to the teeth with platitudes and the wisdom of inexperienced youth, I felt incompetent. As if I had no conception of what this person was really thinking, really feeling, but had only entered that room in the same way a young child enters the bedroom of his parents, generally understanding the layout and purpose, yet completely floored by the magnitude and reality of it all. What could I offer Susan? What did principles and ideals mean in the face of raw, messy suffering?

I suddenly realized that all my thinking, all my convictions about human suffering, meant nothing to a human being who was actually suffering. If anything, those thoughts were simply barriers. They were intellectual formulae, concocted so that I would always have an answer—an answer to Susan’s questions, yes, but mostly to the awkward and uncomfortable silence. The silence which would tell me that, for all my thoughts and experiences, I, too, was a fragile and vulnerable human being. That I lacked the solutions not only to this woman’s struggles, but to the messy surprises of my own life.

Fear of that silence—of raw, unfiltered openness—prevented me from being truly present with Susan. I felt that there might be a gift in the silence, a profound lesson, if only I could glean it. But in order to do that, I would have to stare those speechless moments straight in the eyes.

—–

As the quietude drew taut against my patience I slowly, staggeringly, drew backwards in time: back to my hospice training sessions where I, and eleven others, prepared to comfort the dying. I was a long-haired, naïve 21-year-old then, with a potent awareness of his own fragility and imperfections. A young man looking to heal myself, and hopefully others, through that fragility and imperfection. So there I was, every Saturday morning and early afternoon, bearing my fears and griefs with a roomful of wiser, humbler, and (mostly) older strangers.

For those precious few hours each week, it was as if I had entered a different world, a world where I could use my words, my experiences, my readings, to explore suffering in a safe and supportive context. At least, that is what I thought I was doing. Vulnerability was intuitive for me, but mostly in the abstract. I could talk about my struggles—with body image, for instance, or my fixation on achievement—but only because I knew what to say. Only because I had thought deeply about these issues and was, in some sense, in control of the narrative. But what if I lost control?

“Alright everybody,” our vibrant volunteer coordinator announced, after an hour-long session on family bereavement. “We’re going to do something different now. I want you to turn towards your neighbor: you’re going to spend the next two minutes staring into one another’s eyes, without saying anything.”

The directive seemed nonsensical. Here we were, grappling with big ideas of life and death—and now what? Had our training manual been switched with the New York Times Modern Love column? I turned towards my partner, a quiet software engineer in his mid-thirties, and looked into his cavernous pupils. His irises were like the bulb of some deep-forest flower, rounding towards an apex opening, reminiscent of the Pantheon. “Go,” the coordinator said, as my skepticism turned instantly to nervousness. There was no reason for me to be nervous, but I was. I was unsettled by the silence, by this engineer’s robotic focus. Over the course of the next two minutes I passed through a psychological and physiological labyrinth, from fear to fascination to comfort to understanding. Understanding first of myself; and then, with time, of the person before me.

Throughout the training sessions, our volunteer coordinator, whom I’ll call Jared, would tell us stories from his own days as a volunteer. One particular Saturday he described a meditative practice which he would employ prior to his visits: “Before knocking on the door,” he said, “I would just take five minutes to breathe, and calm myself down. Because when I’m with someone who’s suffering, I don’t want to be thinking about my kids, or my work. Those things are obviously important, but I’ll never be present to help if I’m wrapped up in them.”

A fulness of compassion necessitates a fulness of self, he implied; and if we are to be of any value to the suffering, we need both. But how do we find that fulness? As Jared’s pre-visit practices showed, we could do so through conscious decision: concerted efforts to stay—and not run—when we lose control of a situation. Once we accept the fact of our discomfort, we can finally do something about it.

And that, I realized, was the core purpose of those two minutes of torture: to place us in a state of total openness, total vulnerability. We could not hide behind our own eyes; we had to learn to see through them. If we could do that, we could look clearly—yet compassionately—into the eyes of a dying person. Moving forward from that lesson, we would need only recall those two minutes of orchestrated discomfort to find a truer, more intuitive presence and peace.

So what could I offer Susan? Only the promise that she could be seen, could be stared in the eyes, and that I would not run. Our first visit, as it turns out, would therefore end much like it had begun: in silence. But far different from the awkward and uncomfortable silence—the searching, seeking silence—this one was slow, reposing. I had stopped thinking about what I wanted to say, stopped thinking about my actions and whether they could resolve Susan’s suffering. Instead my gaze shifted completely to the person before me: the subtle flickers of her personality, the tarp-like pull of skin across her cheekbone. My desire to say something useful all but dissolved; and in dissolving that desire, I said the first useful thing that entire visit.

“That sounds really, really hard, Susan. Can you tell me more?”

Dropping the veil of false wisdom for true curiosity, I came nowhere close to understanding this woman and her struggles. But I was now on the right path. And indeed, for months afterwards, the two of us grew closer each visit, revealing a bit more of ourselves, healing a bit more through that shared, radical vulnerability.

This was the gift hospice has given, and continues to give, throughout all my moments in end-of-life care. A deep openness, manifest in the undemanding and unprotecting relationships between my patients and I. With that gift I have found a new richness to all my relationships—a deep comfort while talking about unresolved struggles, or listening to those of another. Staring into the eyes of a patient, a fellow volunteer, or whoever it may be, I have learned to bear my full self in humility and joy. That, in turn, has taught me to be a better caregiver, friend, and human being.

With the realities of suffering all around us, I remain firmly convinced that we ought to uplift the downhearted. But moral imperatives aside, I know that we are all searching, yearning, for relationships where we can be fully known and fully present. Volunteering in hospice will not fulfill that yearning in the snap of a finger. But if one can embrace the silence, the discomfort of not-knowing, one might just find a new aspect to one’s self and world.

“What no eye has seen,” the Apostle Paul writes to a first-century church in Corinth, will be revealed through a purpose and love beyond human comprehension. Yet I believe there is still something to be found in the eyes. And if we lean into the silence, the Pantheon-like openness, I wonder what richness of healing lies in wait for the living and dying alike.

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Author’s Note: The patient described in this essay has had her name and all identifying features changed or removed for privacy.