Life is a journey, death is the final frontier. These are clichés, yet the metaphorical language they draw upon is worth attending to when we encounter them. Movement is present whether we find ourselves at the bedside of a dying loved one or are confronted with managing our own grief in the wake of a death. This essay uses the text Gone from My Sight as a road map for thinking about migration in dying and argues that rather than dismiss language about travel or visitors, it should be taken seriously when one is with the dying or those experiencing grief.
Active dying, or what is called imminent dying in hospice, includes many physical signs that the body's biological systems are shutting down completely and forever. When someone tells you a hospice patient is “imminent,” it is an indication that a person you may have been caring for or visiting is just days, even hours, away from death. Believe it or not, this knowledge can be a gift to loved ones because it helps them better prepare for the grief that will follow. For some, this information makes final conversations more urgent, and they recognize this period as their last chance to share some important or meaningful message.1 For others, who were hoping for just a bit more time, or a miracle, this insight into the body's decline brings clarity about mortality. Some people are surprised to learn that such detailed, specific, and accurate information about dying exists. Because despite all that we know about dying, many are still under the impression that the dying process is opaque and mysterious. In fact, an award-winning hospice nurse named Barbara Karnes captured this knowledge in a small booklet more than 30 years ago. This booklet is well known in hospice circles, so much so that all you have to do is mention “a small little blue book” and those in the know will quickly respond with the title, Gone from My Sight.2 On the very first page Karnes begins:
Each person approaches death in their own way, bringing to this last experience their own uniqueness. What is listed here is simply a guideline, a road map. Like any map, there are many roads arriving at the same destination, many ways to enter the same city.3
The map metaphor signals movement or travel with a plan, and the metaphor is so pervasive in the realm of dying that its presence or power might go unnoticed. In AIDS and Its Metaphors, Susan Sontag observed, “Saying a thing is or is not like something-it-is-not is a mental operation as old as philosophy and poetry, and the spawning ground of most kinds of understanding, including scientific understanding, and expressiveness … one cannot think without metaphors.”4 If we cannot think without metaphors, what might metaphors about movement, travel, and migration tell us about how we understand the dying process, mortality, and grief?
I picked up Karnes's 16-page booklet again recently for the first time since it was given to me at my first hospice volunteer training in 2004. In the intervening years, I have completed two other hospice volunteer trainings, attended new employee orientation at one of the largest nonprofit hospices in the United States, finished a dissertation about a hospice team, conducted research with and about dying people both in and outside of hospice, and for the last three years I have taught a class about communication at the end of life. My scholarship, and even my class about dying and death, focus on a good death—how we talk about dying well and how we accomplish it, assuming we even can. I am honest with my students, probably sometimes too honest for their tastes, about the realities of dying and death. Sometimes it is easy to see the beauty in being present with the dying, and witnessing their peaceful final breaths. Other times, death is unpleasant and guttural, a symphony of bodily smells, sights, and sounds. It's almost always visceral and painful, but the lessons we can take from being close to dying and death can make our lives more meaningful. I try to avoid platitudes or clichés, like “life is a journey,” which feels trite, but I also recognize that talking about dying and death in this way is comforting for some and can capture the gravity of this universal experience. Words really do fail us. I can see so clearly the limits of language in these moments. Yet it occurs to me that movement or the idea of migration holds much resonance at the end of life, and I've even evoked the metaphor in some of my own work.
In one study, my colleagues and I spoke with terminally ill head and neck cancer patients and their oncologists.5 We found that while they were generally satisfied with their communication, patients weren't necessarily getting all of the information they needed to prepare for their deaths. Their physicians, in their own words, would share information about dying if their patients asked. And patients assumed that their physicians would tell them what they needed to know. This was eye-opening and we wanted to offer some suggestions for how physicians and patients could approach conversations about dying early, long before death was approaching, that could also make the conversations a bit easier for all involved. In order to paint a picture for readers, we needed a metaphor. We offered a Google Earth approach to these conversations. Rather than getting turn-by-turn directions for treatment, we thought a bird's-eye view (maybe a NASA-level view is more accurate) would capture our recommendations well. Together, a patient and her doctor would step back and consider all possible routes. Without the map, how could a patient and their loved ones make an informed choice about the length of the trip or what sites they might want to see in the foreign terrain of illness?
While we might know a great deal about the dying process, at least in terms of what happens to the body, we know less about death, specifically what happens after we die. Death is frequently described as a trip, one that involves traveling from this place to another unknown plane. One to two weeks before death a person can become disoriented, according to Karnes: “There is literally one foot in each world. … There is a seeming aimlessness to all physical activity. Focus is changing from this world to the next; they are losing their grounding to the earth.”6 This stage of becoming increasingly disconnected from this world can cause stress and anxiety for caregivers because up until this point, their loved one was very likely sleeping more and engaging with their surroundings less. As a result, they can feel helpless, not knowing how to restore the calm state they previously observed in their loved one.
What is so intriguing is that people near death will sometimes talk about traveling during the dying process, or the need to get prepared for a trip. In Final Gifts, Maggie Callanan and Patricia Kelley share their observations of what's called Near Death Awareness from their decades of work as hospice nurses.7 They offer several narratives of hospice patients who describe traveling or the urgent need to travel. The uninitiated might argue and insist that traveling is impossible, but going on a vacation is not the goal, and wanting to go home may not be a reference to returning to an earthly home. Hospice staff will tell you to be on the lookout for these types of requests because they are one sign that someone is moving closer to death. The dying person isn't the only one traveling, migrating between this world and the next. Some report having visitors, visits from family who have long been dead. Rather than feeling haunted or fearful, these guests are comforting and welcomed.
Despite many years sitting at the bedside of people as they prepare to depart, I haven't received any of these stories. One of my patients, however, did describe some physical movement in her body, tingling and dancing sensations in her legs. As I sat at the foot of her bed listening to her try to accurately capture the feeling, I tried to imagine myself lying in her place. The sensation of feeling some intangible, indescribable energy moving down my declining body. I asked if this was her soul trying to depart, but she didn't believe in a soul or an afterlife. “It was just a feeling,” she said, “I tried to make it last as long as I could, thinking this was it, but it eventually stopped.” I could tell my patient, a woman I now considered a friend after more than eight months of weekly visits, was disappointed. And I was disappointed for her because her body thwarted the will of her mind.
Sometimes, days or hours before death, a person will have a sudden burst of energy, talking and wanting to eat for the first time in many days.8 I have experienced this with two people, one was a mentor, who used some of her surge to advise me one final time. And another, a hospice patient I met during my dissertation research, devoured several desserts—and enjoyed them—unlike anyone I had ever seen before or since. They both died within just days of their rally. “The spiritual energy for transition from this world to the next has arrived and it is used for a time of physical expression before moving on.”9 Unfortunately, this energy inspires hope in some loved ones and can lead to tremendous distress when this rally transitions into a deep slumber that endures. A watchful vigil often begins and time slows, breaths slow, and the time between inhales and exhales gets longer. “The owner is no longer in need of a heavy, nonfunctioning vehicle. They have entered a new city, a new life.”10
There is more movement on the horizon for those left in the wake of a death. Family, friends, and loved ones now have their grief to traverse. “We don't get over grief, we go through it,” was what a hospice chaplain told me when I was conducting interviews for my MA thesis. His declaration left an indelible mark on me, and it's a phrase I find myself repeating to my students as a caution. I also note that age and terminal illness can lead to anticipatory grief.11 While this type of grief might lessen the initial shock of a death, the bodily and emotional experiences that follow a loss will need attention. Grief takes time and it can't be forced because it is itself a process of migration. So, while our jobs may give us three days off from work, we will likely experience the pain of the death for much much longer. Despite the belief that grief occurs in stages, there is no specified amount of time when grieving or grief ends, but the pain will gradually become less intense—this is the only checkpoint.12 There is an element of grief that is unpredictable, much like the waves of the ocean that are sometimes small and gentle. Perhaps these are pleasant memories. Yet sometimes, when we least expect it, a big wave comes up and knocks us back, and the hurt of death is crushing.
Hospice organizations offer grief counseling for 13 months following a death. This care is optional in part because the feelings that accompany death are normal. It is normal and expected that someone will be sad, for example. But this amount of time, 13 months, is by design. A bereaved person will have gone through all the major holidays, anniversaries, and birthdays, plus one month. Perhaps 13 months doesn't seem long when we consider the course of a life, but while in the midst of a death the movement of time can feel slow and agonizing. It is also important to consider that we don't necessarily grieve one death at a time. As we experience more losses, they accumulate, and the death we face today will conjure up one or many deaths from our past. Jacques Derrida made this observation in The Work of Mourning—the death of one of his contemporaries may have evoked emotions about the death of his mother.13 This is not because Derrida or others of us have not worked through our grief, but because it is always with us, it is actually the baggage of living that eventually shapes us and informs our present and our future.
Rock star Nick Cave recently wrote about grief in response to a fan's inquiry about whether or not he dreams of his dead son. His letter in part said, “grief is the terrible reminder of the depths of our love and, like love, grief is non-negotiable.”14 Later, speaking more directly to the topic of the fan's inquiry, he described feeling the presence of his son and his wife being visited by him in her dreams. Much like unseen visitors during the dying process, there is no clear evidence of the veracity of these travelers, but they have a function. “Call to them,” Cave urges. “It is their impossible and ghostly hands that draw us back to the world from which we were jettisoned.”15 Death, and its companion grief, are not something most of us seek out. Most of us would be happy to avoid both completely, yet this relocation is inevitable. That's the pact, according to Cave, it's the price of love.16
Our dying, the death of others, and grief can create paralyzing fear, especially for those unwilling to confront their mortality. Language, frequently in the form of euphemisms, is deployed to downplay the gravity of the situation. But this can only provide temporary relief because it is impossible to travel through this life and avoid death. It is always present. Buddhists call for a daily death meditation, but for those not prepared to sit and contemplate their demise, being mindful of language, and a willingness to talk, are good preparation for the trip. Migration at the end of life, what we might think of as a metaphor, a visual stand-in that attempts to paint a picture in our minds, is perhaps actual. It begins when we are born, and touches our lives, until eventually it is our time to transition from this life to the next. Whether we move toward death with intention, it will most certainly travel to us.