Writing a new story in the Year of Stories: a reflection.

I discovered this week whilst listening to the radio that our national tourism agency Visit Scotland had launched the Year of Stories 2022 – a year which they describe as one where we celebrate stories inspired by, written, or created in Scotland. They go on to say that ‘stories are a vital part of Scotland’s culture, and every community has a different tale to tell. Shared stories, whether spoken, written, sung or filmed are what give a sense of place, history and belonging.’

As part of the Year of Stories there are already being organised hundreds of events across the country in museums, cinemas, community centres and visitor attractions which will focus on storytelling and the art of story. All of this in an attempt to capture the imagination, to entertain and inspire.  You can find out more on their website and by following the hashtag #TalesOfScotland.

I have written a few times about the power and importance of story and storytelling, not least in social care and in palliative and end of life care. I have reflected that stories are not just about a source of entertainment and escape, but rather that the real power of story is as a force for change and a tool to make a difference to our lives and communities.

But as I heard about the Year of Stories there were two stories which that day were uppermost in my mind, firstly Omicron and also the experience of living with dementia.

As I sat there I could not but reflect on the stories which I have been hearing and am still being told; these have been stories of this aching pandemic and of the response of the social care workforce and organisations to the Omicron virus. They have been stories of people separated again from loved ones in care homes struggling with outbreaks, of people in the community frightened of being supported lest someone brings the virus in to them, of family carers with nothing left to give such is their exhaustion.

This past week has been one of the hardest ever for anyone running a social care organisation or working in frontline care delivery. The levels of staff absence because of Covid have been crippling with some care organisations running with 25% absences, whilst the majority are experiencing absence rates of between 10-15%. What this means is not just a stretched service but an exhausted one especially the women and men who are now working double and sometimes triple shifts. They are drained to the bone of energy and yet they keep coming back to the frontline because they care and because they do not want to see those being supported whether in care home or community abandoned.

I have never before heard reports of such stress as those I have heard in the last week. And one of the things that is making it really hard for all involved is the constant drip drip of commentary that suggests that Omicron is a mild virus, ‘like the common cold.’ Now apart from the fact that we have been warned this week by experts such as the World Health Organisation that such comment is dangerous, the severity of Omicron does not really change the fact that because it is so infectious thousands of health and care staff are off ill or isolating and that those left are on their knees. A system can collapse through a mild disease just as quickly as through a severe one. In many of the conversations that I have shared this past week folks are despairing of the reality that as they are struggling ‘in the trenches’ the rest of the world has become dismissive and blasé believing that the pandemic is over, that we just have to ‘ride it out’, rather than taking the threat to our health and social care systems as seriously as they should. And that threat should absolutely worry us – any of us – who might sometime in the next few weeks want to call an ambulance, experience an emergency health incident, be worried about the health of a sick child or relative. If we do not take actions to protect others in this crisis then they will not be there to take action to protect us in our crisis.

As I reflect on storytelling in a week such as this I cannot help but remind myself that stories are not always works of fiction and make-belief, tall tales of impossibility and miracle. Stories are the happenings of our moments, the actions of our heart, the fruit of our relationships. We are not passive actors on a stage which we cannot control and using a dialogue we have no influence over. We are not the playthings of a writer beyond our ken, but rather we are the agents able to influence the outcome. In other words the real power of story is that the page is still unwritten and we have the ability to determine what is the ending to our most important stories. We have control in this Year of Stories of the story of our time, and that at this moment in this year is still the story of Covid. We can determine whether with the aid of reflection at the end of this year we look back and read of the folly of forgetfulness and the narcissism of self-interest, or we can read of collective solidarity and support, where once again we rolled up our sleeves and were present for others.

So as well as Omicron, as I sat listening to the plans for the Year of Stories, I could not but also think of the fact that it was my parent’s birthday that day. As a child it was a great benefit to have your parents’ birthday on the same day! Now that they are no longer alive inevitably it is now a day of reflection and remembrance. But it was also this year a day where – albeit on the margins of media stories covered that day – new research was published on dementia, the disease which took my mother from life and with which we had as a family lived with for years. The Global Burden of Disease report was the first international study of its kind and it was reported as stating that:

‘The number of adults living with dementia worldwide is on course to nearly triple to 153 million by 2050… Experts described the data as shocking and said it was clear that dementia presented “a major and rapidly growing threat to future health and social care systems” in every community, country and continent.”

It went on to state the substantial evidence indicating ways in which health and lifestyle could be improved and changed in order to prevent dementia which for the majority is not ‘inevitable.’ It also argued quite clearly that there was a need for major investment and research to ‘find a cure’ for a disease which will outstrip all as a threat to humanity and the quality of life.

To some extent this research tells us nothing those of us involved in the world of dementia did not know or at least fear. Its robustness and rigour is what is terrifying. But it also shows the way forward and the prospect of change offered to us.

I cannot be the only person who has marvelled at the way in which the global pharmaceutical and research community has come together and within an astonishing period of time has managed to find vaccines of such effectiveness and safety that we have prevented the Coronavirus pandemic from being even more disastrous than it has been, The vaccine discoveries have been an astonishing result of science and collaboration. Equally I cannot have been the only person, not least those whose lives are shortening as they live with dementia and those who love someone with dementia, who has not asked the question, ‘If they can do this for Covid, why cannot they do it for dementia.’

I am the last person to demean or diminish the dedication and energy of those over the years who have been involved in researching dementia and a potential ‘cure’, but I will be the first to question the moral priority of societies which continue to fail to invest and prioritise such research. I will be the first to call out the reality that when push comes to shove a disease that predominantly affects the old (but by no means exclusively) is deemed and viewed by society as less significant because of an inherent cultural and global ageism. That simply has to change. We must get serious and with the same international and national focus which brought us the Covid vaccines turn our attention to dementia.

In this Year of Stories, we need to be reminded that within us all is the ability to write a new page, to create a new ending which is of hope and change, restoration and light. In the dark winter days where in a care sector stress and exhaustion run rampant, we need to know that every change worthy of its name has been brought about by ordinary women and men deciding to change the story of their living. The power of story lies within each one of us to become a narrative which changes lives and improves community.

In this Year of Stories I hope we can use our words and actions for the betterment of all and not just the entertainment of a few. Because stories at their best, I believe, can change the world, re-orientate direction and motivate lethargy and tiredness.

Let us all therefore write a new story for this year and every year.