The Stories We Tell Part 1

How family narratives shape end-of-life experiences

When the end of life is on the horizon there is often a need for a unique type of conversation-one that reveals thoughts and feelings that have never be talked about.

While the concept of broaching such a conversation often seems frightening, it can arise organically-in the middle of an ordinary afternoon, in the pause after an activity or in the quiet that follows a meal. These are opportunities to make space for thoughts and feelings that may be unknown to others and perhaps re-flect content that may be  deep, troubling or profound.  It is not necessary to understand this as one of the most significant psychological phenomena of the end-of-life period: the turn toward the narrative. The impulse to speak as life contracts, motivates people to tell their stories, share their feelings  and provide new understanding and definition to a person.

THE POWER OF NARRATIVE Stories are how we create and honor our legacies

Life is made up of infinite experiences. If we liken every experience to a thread, we can understand how those threads are woven together to weave the tapestry of our lives.  Decades of psychological research supports this interlacing of experiences in recognizing how human beings construct identity and meaning and provide direction across their lifespan.

When a person receives a diagnosis that will alter or end their life, the expectation on how the next chapters of their story will be written becomes uncertain. What they imagined or simply took for granted changes in a moment.  The question that emerges, sometimes consciously and sometimes not, is: what is my story now?

The research on this is consistent: people who have been able to construct a coherent narrative of their lives — who can articulate not only what happened to them but what it meant, how it fits together, what it produced — report higher levels of psychological wellbeing and lower levels of existential distress. Knowing that the tapestry that tells the story of your life, remains intact, facilitates the ability to see the work to completion. Allowing the story to be told fully and honestly — and perhaps most importantly, witnessed by loved ones, makes the end of the journey so much more meaningful and easier to manage.

The telling matters. Having it received matters even more.

IDENTITY AND ILLNESS

What storytelling preserves when illness takes so much else

Progressive illness does something that most of us are not prepared for: it takes, incrementally, the things we have organized our identities around.

Competence, independence, and work make up the outer layers of identity — the ones most visible, the ones that organize the daily experience of being a particular person in a particular life.  They display the physical self that moves through the world with the confidence of knowing who we are.  And they are, it turns out, quite vulnerable because they depend on circumstances that illness can and does change.

What is important to understand is that illness cannot touch the interior self: the accumulated history, the relationships, the moments of genuine encounters that have constituted one’s life. This is where storytelling enters. This is not the storytelling that includes fables and fantasies.  This is the telling of the story of one’s existence-what has been meaningful, what their wishes were, what were their hopes, dreams, expectations, disappointments in life.  This is the tapestry of who they are.

Whether we call this immortality, leaving a legacy or simply defining oneself, as life nears to a close, people want to know that they have made a difference, that they have been known-in short that they existed.  What is our existence if no one knows it?  When a person talks about their life they are not simply reminiscing. They are demonstrating, to themselves and to their listeners, the continued existence of a self that is not reducible to what the illness has taken.

This validates the life lived and establishes a legacy that survives separately from the illness and will outlive a life completed.