Meanings in what happens to us

Existential phenomenologists are interested in what dying means, how we live while dying. Many experiences of living while dying are passive. Physically, taken-for-granted health maintenance and immune systems in our bodies begin to give way beneath our awareness and beyond our control. Others too often treat us as if we are the disease or condition we have rather than the whole persons we are living with the disease or condition. Both Cicely Saunders, founder of the modern hospice movement, and Balfour Mount, founder of hospital-based palliative care, devoted their lives to countering this tendency and wisely promoting whole-person care. Frank (1991) reminds us that we cannot simply drop off our bodies for repairs. Our whole conscious being is embodied; we live “at the will of the body.” We are consciously aware of and engage with the world through our bodies. Things that happen in our bodies limit what we can do and experience in the rest of our lives. Intense physical suffering makes it nearly impossible to attend to or care about anything else. The progress of disease or a life-limiting condition, treatments and procedures, or their consequences can affect our access to and abilities to move about within our environment, limit our interactions with familiar things and places, undermine our abilities to do things or enjoy doing them, reduce the range and variety of our experiences and activities, compromise our acting on our decisions, distort or undermine our abilities to express ourselves, alter our interactions with others, make us increasingly dependent, distort our awareness of the world around us, and even undermine our capacities to orient ourselves cognitively in reality.

Eric Cassell writes of how we suffer in living while dying as the whole persons we are, from both disease and its treatment (Cassell, 1991). We can define suffering as the experiences of loss of wholeness (brokenness) and pain and anguish that come over us. Our suffering may include helplessness before what we cannot control, fear of being overwhelmed, shame in dependence or loss of appearance, longing for life as it was, sensing we do not belong where we are, anguish over connections with those we hold dear, feeling distant from the ground of our being in the divine or the sacred, fear that the world is chaotic or unfair, feeling deserted by faith, doubting our abilities to persevere, fear that joy and laughter are no longer possible, longing for hope and courage to face and venture into the unknown, anguish over what is to become of our loved ones, or doubting the value and meaning of our lives as already lived or as they remain to be lived. Rando’s works on “anticipatory mourning” (Rando, 1985, 2000) vividly describe experiences of loss and grief reactions to them as well as the suffering that accompanies anticipation of leaving behind everyone and everything we have cared about in the finite life we know.

We are often gripped, even stopped, by emotions as we live while dying. As the etymology of the word “emotion” (attachment of the prefix “e” to “motion”) tells us that it literally means “without motion,” it captures this aspect of our emotional experiences. It is a mistake to interpret emotions as nothing but the physical sensations we associate with them. Judgments about reality and some of our deepest desires and needs are inherent in them (Solomon, 1983). Many interpret emotions as crying for expression to dissipate their energy and power. I prefer to read them (Attig, 2012, p. 40) as like physical pains calling us to attend to things that give rise to them and have serious implications for how we live. Like physical pains, they persist and intensify until we give them and their underlying causes appropriate attention.

Meanings in what we do

Many experiences of living while dying are active. As life-threatening illness and life-limiting conditions come into our lives, much of what we do in their shadows involves learning how to live within a changing life environment, in relationships with others, and within our own skins, as we reshape our daily life patterns, learn to carry elements of brokenness and sorrow, and focus on what is most important to us in what may be the last chapter or chapters of our life stories. These engagements with major change are active aspects of anticipatory mourning strongly analogous to my interpretation below of grieving response as the active aspect of relearning the world.

How much more valuable and urgent is the existentialist wisdom in authentically facing our mortality when we see that our life possibilities are rapidly diminishing! Tragically, many of us become caught up in increasingly futile attempts to find a cure, experience suffering that spirals out of control, or die suddenly without realizing genuine possibilities for living meaningfully while dying. As Weisman and Worden describe the possibility of dying an appropriate death (Worden, 2000) and Corr (1992) writes of task work in actively coping with dying, they focus of how we can do what matters most to us while dying.

Frankl (1959) describes three possible sources of meaning in living. We can reach for meaning in achievement values as we attend to unfinished business, contribute in small ways at home or in community, or put our affairs in order. We can teach others important lessons in how to live through telling or showing the way in what we do (Albom, 1997; Kübler-Ross, 1969). We can help loved ones prepare for living in separation from us (Attig, 2000b); write ethical wills to pass on values, beliefs, and blessings (Baines, 2006); or, in dignity therapy, say what we need to before we die (Chochinov, 2012).

We can reach for meaning in experiential values as we savor happenings and encounters in everyday life we may have taken for granted or reach for joy, excitement, awe, and wonder in the extraordinary in events we do not want to miss: nature, the arts, or items on a “bucket list.” Many of us treasure experiences in loving relationships most of all.

Finally, we can reach for meaning in suffering and attempts to overcome or transcend it. Balfour Mount speaks often of the possibility of healing when physical healing is no longer possible, asserting boldly that “a person can die healed.” Defining “healing” as turning from suffering toward experiences of integrity, wholeness, and inner peace, he believes that deep within we all tend, in hope, toward healing in connections with our deep selves, others, the world perceived through our senses (in nature or music), and ultimate meaning as variously conceived.

Byock (2004) describes how we and our survivors can complete or heal our relationships as we express our love for one another, say thank-you for what we treasure most about each other and our lives together, forgive and ask for forgiveness, and find meaningful ways to say good-bye. He tells compelling stories of interactions among his dying patients and their families that vividly illustrate these healing possibilities (Byock, 1997).

Singh (1998) describes engagement with mystery at the end of life unfolding in three stages. Chaos includes letting go of ego defenses and dread of being engulfed or overwhelmed. We sense we are entering unknown depths that appear at first to be dark, mysterious, and “other.” In surrender we can open to and find healing connection with deeper aspects of ourselves (soul and spirit); review our whole lives with forgiveness, gratitude, and compassion; let go of our sense of separateness; begin to sense that the power our ego had been resisting is a higher power within us; and come to a deep stillness. In transcendence we can experience ourselves expanding into a spiritual connection with the most subtle and sacred dimensions of being, the divine or the surrounding mystery that holds us all, and experience the ground of our being as love itself. Singh reports that many dying persons say they have never felt so truly alive; have tears of joy, awe, and gratitude; feel spirit pouring into them; sense the presence of God; and feel that they are “entering into something vast.”

Meanings in what happens to us

Existential phenomenologists are interested in what bereavement and grieving mean in the living of them. Many experiences of loss and grief are passive. Deaths of our loved ones happen, and we find ourselves in bereavement, a state of having lost, or deprivation. Loss brings unwelcome changes into the world of our experience, undermining the rhythm and disrupting the momentum of the flow of our lives. It takes our breath away (Attig, 2012).

In grief reactions, brokenness and sorrow come over us as we experience the emotional, psychological, physical, behavioral, social, cognitive, soulful, and spiritual impacts of bereavement. We relearn the world in reaction as we absorb, or take in, the realities of loss in our individual, family, and community experiences. We experience brokenness in shattered illusions of control, invulnerability, and separateness; unraveled individual, familial, and communal daily life patterns; and disrupted individual and collective life stories taken into unanticipated next chapters. Bereavement leaves us still poised in needs, wants, emotions, motivations, habits, dispositions, interaction patterns, expectations, and hopes that shaped how we lived when our loved ones were alive that now may no longer find their objects in a world where they have died. Bereavement renders useless all of what we and our families and communities have assumed, or taken for granted, about how to live in the presence of our loved one. It undermines our egos’ practical functioning and self-confidence, uproots our souls, and shakes our spirits. It often undermines beliefs about the world as being more or less safe and just and our place in it secure (Janoff-Bulman, 1992). For most of us this cognitive disenchantment, painful though it may be, is not the most important aspect of the loss of the assumptive world in bereavement. The visceral unsettling losses of the sense that we are safe, the feeling that there is a place where we belong in the great scheme of things, and so much of what we have taken for granted about how to live are far more daunting (Attig, 2002).

Our sorrows (Attig, 2001b) may include pain that comes when we meet with something that reminds us of separation, or as memories spontaneously surface from within or in conversation among us. This is only rarely the pain of separation anxiety (as attachment theory would have it) but rather the pain of missing someone we love. We may experience ego pain in helplessness, frustration, disillusionment about fight/flight defenses, or fear of being overwhelmed. We may feel soul pain in sadness; longing for the presence of our loved one and all it made possible; homesickness for the familiar, guilt or anger about ties with the deceased; isolation or alienation from others; doubt about caring deeply again; or abandonment by, or loss of trust in, God. We may experience spirit pain in despair, discouragement, fear that life is meaningless or joyless, or doubt that we can overcome suffering, face unwelcome change, or open to an unknown future. We may feel family and community pain in missing an irreplaceable character in our lives, feeling for others’ grieving, or dread for our futures together.

Meanings in what we do

Many experiences in bereavement and grieving are active. In grieving responses, we invest time and effort in coming to terms with what happens to us in bereavement and grief reactions. We relearn the world not by cognitively mastering information but instead by learning how to live in all dimensions of our being with our brokenness and sorrow, in our physical surroundings, with those who survive with us, in our place in the great scheme of things, within ourselves, and in our relationship with the one who died.

The labors of relearning the world (labors of love; Attig, 2001a, 2012) are as richly varied as are those of learning how to live from birth. Most often without thinking and in styles uniquely our own, we straightforwardly engage in ways of living we already know well. Sometimes, we self-consciously solve problems. Often we complete relatively small bits of work, or tasks properly so-called. We undertake life long projects of adapting our understandings (sometimes deliberately changing our life narratives), emotions, behavior patterns, and relationships as we meet with new aspects and implications of our losses, what Worden (2009) calls “tasks.” In encounters with mysteries of finiteness, change, uncertainty, life, love, suffering, and death inherent in our human condition, we change ourselves and how we live. We do these things in contexts in which we are vulnerable (Attig, 1996) to anguish over unfinished business with the deceased, trauma, disenfranchised grieving (Attig, 2004; Doka, 2002), other challenging social circumstances, and limits of our coping capacities.

We relearn the world as we engage with our sorrows. Sometimes from past experience we sense what our reactions and the needs reflected in them are, are guided in usual ways by them, and feel no need to dwell in or express them. It is only human to experience sorrowful emotions as things we would like to avoid or overcome quickly if possible. So we may respond to them in ego fight/flight defenses (Kübler-Ross … Kessler, 2007) in attempts to control reactions we may experience as threats, failings, or weaknesses (Greenspan, 2003). As they persist and grip us more tightly, we can experience our grief reactions as crying more for attention and understanding than expression. We can reflect on them self-consciously alone or with others. We can use sorrow-friendly practices to befriend our sorrows: to make ourselves at home in our deep selves, dwell compassionately with our suffering, and venture beneath life’s surface to discover our deepest needs and capacities to meet them (Attig, 2012). Attending to and learning from sorrows loosens their grip. We can learn to carry sorrow as, through our tears, we meet with and welcome our loved one’s soul and spirit in the world around or within us in lasting differences he or she has made. Experiencing the pain of missing them after they’ve died can then become more and more like the pain of missing them in separation when they lived.

We relearn the world as we draw on our resilience, or what is not broken within us (Attig, 2012). Our breath animates our bodies. Our egos, humbled by mysteries, return to practical functioning, dealing with threats, controlling appropriately, solving problems, and fixing when possible. Our souls find sustenance in our surroundings, draw from roots in family and community, and still care and love deeply. Our spirits find hope and courage to rise above suffering, venture into the new, change and grow, know joy again, and seek transcendent understanding. Our love cherishes precious memories and legacies, revives connections with fellow survivors, and opens to new relationships. As we do these things, we revive ourselves, weave a web of old and new cares and loves into our daily lives, and give new direction and meaning to our life stories.

We relearn the world as we learn how to love in separation (Attig, 2000a, 2012). We continue loving while apart in ways familiar from when we were apart when our loved ones lived. We find renewed wholeness as we weave threads of enduring connection into our daily life patterns, develop themes of lasting love in next chapters of our lives, and sustain movements of loving and being loved in next figures of the dances of our lives. We “let go” of the living presence of our loved ones and all it made possible and of troubles in ties with them that may cause separation anxiety, anger, or guilt. We forgive our loved ones or ourselves in order to reach through trouble to enduring value and meaning. When we meet with painful reminders of separation, we can reach through the hurt and attend to how the reminders also hold something touched by our loved ones or from our lives together. In such experiences, and through deliberately remembering, we reconnect with some of the best in life (not “inner representations” as some in the field would have it), attend to and are moved by our loved ones here and now, feel the warmth of our love for them, sense their love for us, and enjoy them again in praise and gratitude. We embrace their legacies: material things and genetic inheritances; interests and ways of doing things; ways of making ourselves at home in the familiar, caring, and loving; and ways of reaching for the extraordinary, changing, growing, striving, overcoming, and searching for understanding. We appreciate how our families, our communities, and we are indelibly different because they lived and how we have become, in part, their living legacies.

As we relearn the world in these ways, we can sense that we are returning home in the universe (Attig, 2012). We can draw on belief, trust, and loyalty to life; engage in spiritual practices; pour our souls and spirits into living well again; make ourselves at home in the world around us; give places in our hearts to all of our loved ones as well as to the full range of cares, loves, hopes, and aspirations that make us who we are; acknowledge our good fortune in loving and being loved by the deceased; sense that, in the end, courage, hope, and joy outweigh fear, despair, and sorrow; and live more fully when we are grateful.