Living Well while Dying

Our dying, like our living, is both personal and paradoxical. Each life is a uniquely personal journey that begins with birth. Each of us lives our own life and dies our own death. Our death, like life, is also a paradox. A paradox, as I mean it here, is a seeming contradiction that is nonetheless true. The contradictions that are true are not accidental; they are inherent in human nature, in human community, in the circumstances of life, and in our spirituality. Wives and husbands become intimate when they succeed, as Rilke once said, in ‘loving the distance between them’. Consolation is found where our wounds hurt most. We get over loss by dwelling on it. God is far away and near at hand. Paradox is everywhere in life, in faith and at death.

We express that contradiction about death in a number of ways. We say death is both friend when are weary from the pain and the struggle of living, and an enemy when it disrupts life suddenly and prematurely. Death is both moment and process. It is a moment in a process of dying that accompanies all our living. Death is also both a problem to be solved and a mystery to be experienced. Because death is a problem, we keep asking what must be done about this medical situation or that. Because death is also a mystery to be experienced, we ask a different question: How shall I behave toward this situation? Toward death? It is a very delicate transition to make.

Karen Speerstra had lived fully with ovarian cancer for ten years before we began to write a book together about her dying. She had managed chemotherapy well, wrote three books, travelled extensively, maintained a blog, and kept a garden until she and her husband were caught in a snowstorm night shortly after Christmas. Here is what she wrote about that moment:

Fatigue piled up, like the snow lining our Vermont driveway. Doggedly following in my husband’s tracks, I slowly trudged up the hill. It was then and there I decided: no more chemo for me. I am looking for some quality of life – quantity be damned… I want to participate fully in my living until I die. And I want to be conscious enough to grasp some of the finer points of this whole mysterious ‘dying thing’.

Karen lived fully, wrote the book, walked the labyrinth, tended her garden, and began painting again. Death was no longer a problem to solve: it was a mystery she wanted to experience fully and she did.

There is yet another paradox that illuminates our understanding of death. Death is both fate and act although each individual death will be more one or the other. The end of a human life may be a rupture or accident, a heart attack or stroke that seems to strike from without, suddenly and tragically. When that happens, we may say that ‘death took’ Sam Jones or ‘cancer took’ Jessica Riley very young as if death or cancer had agency outside us. At the same time, my death is something I do. I die. At some deep mysterious level, we may be participants or agents in our dying. We can all tell stories of someone who waited to die until the prodigal child returned or the entire family was at the bedside.

Because death is an irreducible dialectic of opposites, it remains a mystery in which we may participate in equally mysterious ways.

My mother had been in the coronary unit of a hospital for several weeks and they had determined to move her to a nursing home. She did not want to go, and died in the night four hours before they were to take her from the hospital. We have some hints that Karen Speerstra acted as a participant in the ‘whole mysterious dying thing’. Here is how her husband describes Karen’s last moments:

Jonna, Karen’s good friend and palliative care doctor, called our older son, Joel, in Sweden, and told him to come as soon as possible. He came the next day. Very weak now, Karen looked up, saw him and said, ‘Hi, sweetie’. Just before we started the Commendation of the Dying, one of Karen’s last clear words was ‘Music?’ with an imperceptibly arched eyebrow, as if to say, ‘Come on guys, haven’t you read that chapter?’ Hildegard of Bingen soon filled the room with music and continued until she died the next afternoon while we held hands and talked to her.

Because death is an irreducible dialectic of opposites, it remains a mystery in which we may participate in equally mysterious ways.

Sometimes we die as we have lived and sometimes not. Sometimes a short life may be full and a long life may be empty. And sometimes how we die is the best thing we do in a life.

The capacity to act is an essential dimension of being human. It is human agency that presses one to ask ‘what shall I do with my life?’ Or ‘how shall I live toward my death?’ It has been said that the hospice may be the single most humane place in the entire modern medical system because it is the one place where we can be sure that everyone is committed to enhancing our participation and agency for the sake of human well-being while dying. The shift away from unilateral medical authority and patient passivity toward greater patient autonomy and agency is an important correction of a previous imbalance but it cannot and should not eliminate ambivalence towards death.

Death itself provokes that ambivalence, no matter how fervently we wish it were not so. We would like to control death as much as we long to control life. We make decisions about our living while dying as long as we can but we cannot control our dying. Deciding to let go of the desire to control becomes a way to embrace the ambivalence that death evokes. We will still choose, and we will still need to choose, but we will make those choices in a context that recognizes and supports the inevitable ambivalence toward death as friend and enemy, as fate and act, as disruptive end and gracious fulfillment of a life.

‘A current of loss flows through your life like the tide that returns eternally to rinse away another wafer of stone from the shoreline…The beauty of loss is the room it makes for something new’ John O’Donohue wrote in Eternal Echoes.

There is yet another paradox that informs our living before dying and living while dying. The other side of agency or activity is passivity, of waiting and not having or possessing because we wait. This has significance for our consideration of fostering agency and autonomy at the end of life. The human creature is both subject and object, both actor and acted upon. Activity and passivity are both essential qualities of being human. In our waiting, our passivity, our being done to in the world, we are no less human than in our acting. The image of God in which humans are created includes not just agency but passivity, not just action but receptivity. We are thus fully human created in the image of God when we are actively creating, producing, initiating, and making things happen, but we are also fully human created in the image of God when we are passively incapacitated, ill, waiting, needing, dependent, suffering, receiving, and submitting.

This may be the most difficult paradox to embrace in cultures that prize autonomy and agency, even idolize independence and self-sufficiency. We do not like people who are overly dependent. We do not like having to take care of people who are overly dependent, even if they sick, or on welfare, or handicapped. We certainly do not like it when we, for whatever reason, become dependent. We prefer self-reliance. The problem posed by death is that dying is the most extreme neediness. In a culture that idolizes independence, dying is not so much the problem as the neediness, the dependence, the passivity that underlie it. We are ill-prepared for dying in a culture of autonomy and agency. And we have so little practice waiting. We don’t join the queue if the line is too long.

In a culture that idolizes independence, dying is not so much the problem as the neediness, the dependence, the passivity that underlie it.

We think of waiting in terms of powerlessness and helplessness and passivity. Therefore, we need to address not just the passivity we move into on our death bed, but the conditions of passivity that pervade our living at all ages. Learning to wait in the grocery line is preparation for dying. So is waiting for the school bus, submitting a job application, or dealing with the failing eyesight, hearing, or mobility of advancing age. If, however, we acknowledge human need and dependence, then we will be prepared for the reality of human passivity and dependence that will manifest itself most fully in our dying. If we have lived in this truth, we will not find passivity so shocking at the end of life.

Shortly after Ernest Becker had completed his book The Denial of Death (for which he posthumously received the Pulitzer Prize) he was asked about his experience of dying. ‘Well, I suppose the most immediate thing I feel is relieved of the burden of responsibility for my own life, putting it back where it belongs, to whoever, whatever hatched me. I think this is the most immediate thing I feel, a great sense of relief and trust that eggs are not hatched in vain’. When we are able to hand over a life at the end, there is great relief. We do not have to be responsible anymore. And we can wait.

About the author: 

Herbert Anderson is Lutheran minister and retired from over forty years of teaching pastoral care in theological seminaries in the United States. He is Professor Emeritus of Pastoral Theology from Catholic Theological Union in Chicago. His the author or co-author of 14 books and over 100 articles. This essay is drawn in part from his most recent book ‘The Divine Art of Dying: How to Live Well While Dying’ written with Karen Speerstra.