In the face of death, telling and sharing our story helps us make sense of dying

June 13, 2016

For those who may feel that many decades separate them from their deaths, contemplating the end of life seems difficult, even abstract. But stories of the dying hold a fascination for us, from diagnosis to treatment, remission or relapse, survival or death.

Personal dying narratives – in which the author writes about their own imminent death, or the tale of their death as written by someone close to them – first emerged as a popular genre in books, newspapers and magazines in the 1950s. Today, such stories published online can confer authors with celebrity status: Stephen Sutton died of cancer in 2014 aged just 19, and his blog, written over the two years prior to his death, was read by more than a million people and helped raise a staggering £2.3m for the Teenage Cancer Trust.

The earliest of these dying narratives tended to be the preserve of public figures, celebrities, authors and journalists. For example, American journalist Charles Wertenbaker’s account of his facing colon cancer in 1955 and his choice to die by euthanasia was the basis of the book Death Of A Man written and published after his death by his wife Lael Wertenbaker. She later said that her determination to publish this story was to raise awareness about the realities of a cancer death and the need to talk openly about euthanasia, and in that she has been successful.

Since then, there have been many other high profile stories of facing death that have raised other issues that go beyond the purely biographical. Tennis player Arthur Ashe, in his autobiography, written as he was dying from AIDS acquired from an HIV-infected blood transfusion during heart surgery, sought to raise awareness of the risks of untested donated blood.

Stories of medical errors or delays in treatment are a common theme. Journalist Ruth Picardie, who died of breast cancer in 1998 aged 33, wrote about the impact of poor medical decision making at her diagnosis that significantly reduced her chances of survival.

Other writers elaborate on the stark everyday realities of a terminal illness: fear and uncertainty. Journalist John Diamond died in 2001, and eloquently wrote how “cancer is for cowards, too”, and not just a battle for the “brave” and “heroes”. For most people, there is no choice but to get on with it, to endure horrible treatments and find very ordinary ways to cope.

In a similar way, doctor Kate Granger shares on her blog the unpredictable emotional responses since her diagnosis with terminal cancer:

As a newly diagnosed 29-year-old girl I thought I knew exactly how I wanted things to be with regards to my treatment. As a hardened and experienced 34-year-old cancer patient I now know I have to face each decision at a time and cannot predict how I’m going to react emotionally to any of this.

The appeal of deathbed tales

Personal stories of death and dying are more likely to be told if the writer is younger, has a cancer diagnosis, and is running a campaign to raise funds or awareness of specific challenges (and benefits) of treatment, or working with clinicians. Older people are much less likely to share stories of illness, particularly if they’re struggling with the more common effects of age, such as stroke or dementia. Older generations are increasing their use of the internet, however, and some charities specific to an illness such as Parkinson’s UK have developed online forums where real life stories can be shared between younger and older people.

There are other subtle reasons for sharing the story of our final days: telling a story can be therapeutic and it can make you feel better to verbally share, write down or unload tales of the affliction suffered, and the resulting fear, anger, confusion or sadness. We have, it seems, a deep need to make sense of events and communicate this process through storytelling.

We turn to writing and to reading other people’s books, blogs and poetry when we are being put through the trauma of illness. We may wish to preserve some sense of normality again, to give voice to memories, and to search for meaning at the end of our lives. Importantly, reading the stories of others can offer support and comfort. To connect with others online and exchange notes about our illness with others in the same situation is to put trust in the personal anecdote over the impersonal official leaflet. Our stories are witnessed, and in this way we may feel some part of our story continues after death.

https://theconversation.com/in-the-face-of-death-telling-and-sharing-our-story-helps-us-make-sense-of-dying-60120