With the End in Mind: Dying, Death, and Wisdom in an Age of Denial

by Kathryn Mannix

I escape to ponder whether bravery is about being fearless or about tolerating fear.

Bereaved people, even those who have witnessed the apparently peaceful death of a loved one, often need to tell their story repeatedly, and that is an important part of transferring the experience they endured into a memory, instead of reliving it like a parallel reality every time they think about it.

This last vigil is a place of accountability, a dawning realisation of the true value of the life that is about to end; a place of watching and listening; a time to contemplate what connects us, and how the approaching separation will change our own lives forever. How intently we serve, who only sit and wait.

Human beings are highly resilient. We adapt to adversity, and find ways to maintain our inner peace as best we can. Often, we use coping patterns that we developed very early in life: if you’ve always ‘put on a brave face’, then that becomes your preferred way, and you may find it difficult to understand someone who copes by sharing their distress out loud. Neither you nor the other person is coping better or being braver than the other; one simply finds inner peace by venting, whereas the other’s peace comes from feeling self-contained. If you are a ‘take control and plan the details’ person, it can be tough for both of you if you are sharing a distressing situation with a person who copes by thinking about everything except the challenge ahead: one person’s avoidance is in direct conflict with the other’s need to plan, and this is stressful for both of them.

The strength of the human spirit is astonishing. People all think that they have a limit, beyond which they cannot endure. Their capacity to adapt and to reset their limits has been a constant wonder to me over my decades in working with people living with some of the most challenging illnesses imaginable.

People are not limited so much by their illness as by their attitude to it. The illness may present physical challenges, but the emotional challenge is often far more important. Our human spirit may stumble as the path ahead appears too daunting, yet with support and encouragement, our resilience can be re-enabled and used to find creative solutions.

Enabling people to be architects of their own solution is key to respecting their dignity. They are only in a new phase of life; they have not abdicated personhood.

No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having ‘lost their battle’, rather than simply having died.

Communication through conversation between two people is such an intrinsic part of life that we often take it for granted, yet we are all aware of occasions when friends and family get hold of the wrong end of the stick. What they thought they heard us say is not, in fact, what we thought we meant. Now multiply the possibilities of mis-hearing, misunderstanding and getting lost in translation when a person gets important news from their doctor, and then tries to report it back to their family afterwards. It’s a recipe for disaster.

Telling children about death is important, yet uncomfortable. We want to protect them from sadness, but prepare them for life. Children’s ability to understand concepts like time, permanence, the persistence of unseen objects, and universality develops over the years, so what we say will be received and processed differently depending on the age of the child. Despite being aware of this in theory, I have been taken by surprise on occasions by the reinterpretation of our conversations by one or other of the children.

Bereavement is the process that moves us from the immediacy of loss and the associated grief, through a transition period of getting to know the world in a new way, to a state of being able to function well again. It’s not about ‘getting better’ – bereavement is not an illness, and life for the bereaved will never be the same again. But given time and support, the process itself will enable the bereaved to reach a new balance.

Here is an important truth in action: by being able to sit with the deepest anguish and not shut it down, it is possible to enable people to explore their most distressing thoughts, process them, and even find more helpful ways to deal with them.

And yet, sometimes there is more to a situation than what we can see and hear before us. Sometimes our attention to the present detail prevents us from standing back to discover the pattern or meaning of what we are experiencing; sometimes our assumptions obscure other possible interpretations of the same information.

Stepping back to find perspective is a challenge. It requires the insight to acknowledge that there may be another way to look at a situation, and the humility to be prepared to examine our own view, and to change our mind if necessary. It may be easier to step back if we approach life with an attitude of curiosity rather than certainty, intrigued by what we may discover for and about ourselves.

Stepping back is not easy, but it is always illuminating. In his essay ‘My Own Life’, written when he knew he was dying, the great medical writer Dr Oliver Sacks describes becoming able to see his life ‘as from a great altitude, as a sort of landscape, with a deepening sense of the connection of all its parts’. He goes on to say that he feels ‘a sudden clear focus and perspective’. This is the great gift that rewards stepping back – to look anew at what feels familiar and already thoroughly known.

The missing perspective on both sides of the debate is the reality of human dying, the unexpectedly gentle progression towards death that most of us will experience, whatever the trials of the preceding terminal illness. Looking beyond the immediate situation offers us all a richer perspective, and enables the dying to focus on what is most important to them, whatever other ideas the rest of us might have.

What a laden word. Legacy is what we leave behind in the world, for good or ill. It may be a deliberate and carefully curated collection of items; it may be the help or harm we have done as we interacted with others through our lifetime. The dying are often very aware of their legacy, and keen to ensure that their life ends in a way that does least harm to those they love. Some people work hard to provide memorabilia for others; some take altruistic action by fund-raising in the hope of relieving unknown others of the burden of disease; some wish to generate opportunities to create special ‘last memories’. Whatever actions they may take with the deliberate intention of shaping their legacy, they may well be unaware of the multiple, nuanced effects that they have already had on other people’s lives.

Sylvie’s mum gestures around the huge farmhouse kitchen, warmed by a squat, ancient Aga-type stove, and apologises for ‘the mess’. The mess seems to be an open newspaper and a teacup lying on the table. Or perhaps she thinks we can see her soul.

The human mind applies itself to many more tasks than simple survival. We are aware of our personhood, and we seek to create a personal meaning from the jumble of our life experiences. Most people adopt some kind of framework that allows them to recognise and respond to the values that give them a sense of purpose. For some their framework is religion, or politics; for others it is the cycles of nature, or the vast unfolding of the universe. For some it is a more immediate system of interpersonal relationships, or thoughtful appreciation of music, art or poetry. Whatever the framework, this search for ‘meaning beyond and yet including myself’ is a metaphysical construct that is the spiritual dimension of being human.

Yet at the end of life, many people make a ‘spiritual reckoning’ of their worth and the meaning of the life that is ebbing; they seek to transcend the difficulties that beset them, and to consider a bigger picture. This impulse allows extraordinary acts of courage and devotion, of humility and compassion, supported and validated by their personal spiritual constructs. It is perhaps that spiritual dimension of humanness that reveals us at our very best, even (or perhaps especially) here at the edge of life.

Sometimes, it seems, a pain in the body is actually a pain in the soul, a pain in the deepest part of our being, often without a name or any recognition.

It’s a truth rarely acknowledged that as we live longer thanks to modern medicine, it is our years of old age that are extended, not our years of youth and vigour. What are we doing to ourselves?

A contemporary Inferno might also have described this scenario: the vicissitudes of extreme age, of a clear mind being tied to an existence that crumbles in staccato steps yet continues to be experienced; or life no longer experienced in abundance by those with inexorable cognitive decline but cruelly robust physiques.

And yet, what can seem intolerable to the observer is often counted as life worth living by the elderly. Mrs Liang did not suddenly wake up old one day; she arrived here via a long and gradual journey of stepwise dwindling, occasional partial recoveries, intermittent thrusts of illness and parries of treatment. She and I observe her situation from entirely different vantage points, and it is her interpretation that counts. As I spend more time with elderly people, I am learning not to make assumptions.

This is when I sense that something interesting has happened: our relationship has shifted. Now, an older woman is mentoring a younger one. Mrs Liang’s aged body still contains an agile mind that wants to keep abreast of current affairs; that has developed an economics-based philosophy of time passing; that has wisdom to impart and kindness to dispense, and yet very little opportunity to do so. In her simple act of compassion, she has been momentarily whole again.

Strangely, this is not a burden or a sadness, but a lightening of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time that we can really experience is this present, evanescent moment. This makes hard times slightly easier to bear, and good times immediately precious. Both happiness and disappointment will pass in time. Awareness of the temporary essence of all lived experience is humbling.

Death itself is perceived by ancient wisdom as a necessary and even welcome component of the human condition: a finality that ends uncertainty or despair; a mandated temporal boundary that makes time and relationships priceless; a promise of the laying down of the burdens of living, and the end of the repeated daily struggle.