Narratives of COVID: Loss, Dying, Death and Grief during COVID-19

PREFACE

A book like this is unable to come into being by itself. From forming as an initial idea to being in your hands right now, there have been many people – named and unnamed – who have influenced the words on these pages. From the authors who contributed their words to those who edited and proof read the book, to those who physically make and ship it (or wrote the code so that you can read the electronic version). As academics, we are familiar with our traditional ways of publishing books and journal articles; this edited collection enabled us to be more experimental with styles, intents, and processes. Not only are we grateful for those listed below for making the book possible, but also for their encouragement and support for this creative community endeavour.

Firstly, we’d like to thank all of the authors who submitted their writing in response to our calls for contributions. For some, this was the first time writing with the intent to publish, for others it was the first time after a significant break or the first time writing about something personal. We do not underestimate the courage it can take to take this step, sending in one’s story and being open to selection and scrutiny. As editors, we’ve been blown away by the sincerity of the accounts and how collaborative the authors have been in making changes to even the most intimate of details. We have shed more than a few tears upon reading these accounts. We are also grateful for all of the people who considered contributing but for whatever reason, did not in the end – we hope that even engaging with the idea of the project has been fruitful, knowing others are interested in one’s ideas and experiences. We acknowledge that for many the journey and experiences of loss associated with COVID-19 are too recent and too painful to reflect upon.

As part of the editorial process, we enlisted volunteers to help us long-list the initial submissions and to provide guidance on editorial issues. Largely, this group of volunteers came from Open Thanatology – the group for death-related research and education at The Open University (OU) – which has been most supportive of the project across the project’s lifespan. We’d like to thank (in no particular order): Joanne Jordan, Sara MacKian, Jackie King-Own, Becky Garcia, Korina, Laura Paterson, Kerry Jones, Claire Harris, Sam Murphy, Jane McCartney, Cass Humphries-Massey, and Marc Cornock.

We’d also like to acknowledge that the idea for the book was inspired by the work completed by our colleagues in the School of Languages and Applied Linguistics in 2020 which Sharon spotted in an internal newsletter. Using internal funding, Anna Comas-Quinn, María Fernández-Toro, Caroline Tagg, Lina Adinolfi and Emilia Wilton-Godberfforde solicited contributions from OU students imitating the Decameron. We are thankful that they’ve kindly given us many hours to learn from their project, from managing the process, to learning to enjoy the journey that editing such a book takes you on. We are also grateful for the colleagues who write these newsletters and have subsequently helped us to promote our own call for contributions, both within the Faculty and beyond, helping us to navigate various university communication channels and encouraging others to share it on social media.

Like the A Multilingual Decameron: Stories of a different world project, the creation of this edited collection has been internally funded by The Open University, specifically financed by our Faculty’s Research Development fund. We were delighted and daunted (perhaps in equal measures) when we heard our bid had been successful, and are grateful that our colleague Dr Liz Tilley, who is instrumental within our school for managing research funding, could see our vision for the book in the short pitch we provided. There is also something very gratifying in knowing that this book is made up entirely of authors who are connected to The Open University and has also been produced with the financial backing of the university; it is thus both a symbolic and practical fostering of the OU Family that goes beyond our usual ways of working.

Making our vision into a reality required the expertise of Michelle Lawson. From front cover to fonts, she’s been invaluable in helping us realise our self-publishing dreams. Michelle is also an associate lecturer with The Open University, as well as having published her own work, including her PhD study of British migrants in the French Pyrenees. Michelle came to us by recommendation and we would also, in turn, recommend her to others embarking upon similar projects.

I (Erica) would like to thank Sharon for being a super collaborative co-editor. As editing goes, this has been a surprisingly smooth process as we fit this project around and within lockdown lives and intense workloads. The flexibility of self-publishing has also meant we’ve had to make many more decisions as we’ve not had the confines of a publisher to wrestle with and guide us. Being able to discuss these with Sharon and Michelle has kept the process exciting. Moreover, it has been incredibly useful that Sharon and I have been able to share the load of reading and processing the different pieces within the collection. At times, reading them has been emotionally wrenching and draining; it was beneficial to have a colleague like Sharon who could understand that. I’d also like to thank my partner, Lukas, for bringing me cups of tea as I read and edited the collection and encouraged me to get out in the sunshine to help me process the vicarious grief.

Lastly, we want to thank you – the reader – for taking the time to engage with the narratives, reflections, and information within this collection. We don’t know why you’ve decided to pick up this book, but we hope that you connect with it. Perhaps you’ll see your own experiences of loss and grief reflected in the words and know you are not alone or perhaps you’ll be inspired by someone else’s narrative to think about your own loss in a different way or reach out to someone to share your experiences with them. Or, perhaps, you’ll even write your own story.

INTRODUCTION

DEATH, DYING, LOSS AND GRIEF DURING THE FIRST YEAR OF THE COVID-19 PANDEMIC

ERICA BORGSTROM AND SHARON MALLON

When we began creating this edited collection in the early months of 2021, the first-year anniversary of the COVID-19 pandemic was looming. As social science academics, who pre-pandemic were already interested in social understandings and experiences of dying, death, grief and loss, the pandemic had heightened our experiences of many of the issues we were already familiar with from our research. As a result, we had spent those early months of the pandemic reflecting both personally and professionally on these issues and how we might contribute to our longer-term understanding of them. We also saw that although death was highly visible in public discourse, individual accounts were also strangely absent, hidden, or sensationalised. Our personal experiences of COVID-19-related death came, thankfully tangentially, through deaths of friends and loved ones to COVID-19 or through the death of distant family members. Nevertheless, this compounded the chasm we felt was being created between those caught up in the reality of death during the pandemic and those of us who were left relatively untouched by these losses. At the same time, we were all experiencing losses of some kind; locked down in our homes, for the time restricted by laws and moral duty from visiting friends and family, or even going to non-essential shops, much less visiting restaurants or cafés for social interaction even with strangers. These collective experiences and our desire to document them has led to this collection of narratives.

Some thoughts about the pandemic: death, dying, loss and grief

At the time of writing, it has been just over a year since the COVID-19 pandemic began in earnest across the globe. To date, according to World Health Organization statistics, it has caused or contributed to the death of over 3.4 million people (World Health Organization, 2021). The way people died during the pandemic often confronted societal norms and expectations about what, under typical circumstances, has come to be described as, a ‘good death’ (Borgstrom, 2020). Experiences varied, from death seeming sudden or unexpected, to deaths that were expected but took days to take place, with loved ones not being able to be at the bedside as people died. Media reports frequently highlighted the injustice of these deaths, especially as it became apparent that social inequalities – such as poverty and racial disparities – were connected with those who died from the virus or had more excess death during the pandemic (e.g. Anyane-Yeboa, Sato and Sakuraba, 2020; Bach-Mortensen and Degli Esposti, 2021). There have also been considerable debates about what ‘counts’ as a ‘COVID-death’ (either from or with the virus) and the resulting difficulties of accurately measuring the impact of the pandemic on mortality rates (Kiang et al., 2020).

Whilst on one hand, this may seem like a rather academic discussion about statistics, it is also important to realise that each number is an individual person who lived and was connected to family and community. It is important to remember that each death often impacts more than just that one person, sometimes having intergenerational impacts, and the effects of the loss can ripple out across the wider community affecting neighbours, work colleagues, and even acquaintances. It has been estimated that for every death, up to nine people are affected by a bereavement (Verdery et al., 2020). In many countries, during the pandemic, public health measures that restricted visits and access to medical and community spaces meant that, at various times, visiting those who were dying and/or usual funerary practices were restricted. In extreme examples, this has led to mass burials (BBC, 2020).

In other more common cases, significant restrictions have been placed by governments on gatherings and these have curtailed funeral and cremation services. Examples of these restrictions include reduced flexibility on deciding on the place and time of interment, as well as strict limits on the number of people allowed, so that only ‘close family members’ were allowed to attend. In addition, funeral attendees were required to observe strict physical distancing, thus preventing physical expressions of emotional support between mourners who,, under usual circumstances would have likely hugged or physically held each other to provide support. Estimates from the UK suggest that up to 243,000 funerals were affected by these restrictions, with 9.7 million mourners being prevented from attending cremations and burials (Co-op Funeralcare, 2020). The funerals of those who died during the COVID-19 crisis thus became reduced both in terms of the number of people who attended and in terms of the usual rituals that were practised. As a result, they were arguably more perfunctory experiences for those who were able to attend. During this time, the notion of a ‘Zoom Funeral’ and explorations of how death rituals moved online became part of the common social discourse (BBC World Service, 2020), with access to many services also being provided online as a way for those who were physically unable to attend any ceremonies to participate. For others, there were hopes that the memorials that would be more befitting of the passing of their loved one, were only ‘delayed’ until restrictions were lifted.

The unusual circumstances under which these deaths took place and the restrictive nature of their associated funerals, means there is a great deal of uncertainty about the long-term social and psychological impact of these deaths on the bereaved. In one study, the majority of the UK adults surveyed felt that lockdown negatively affected their grief as well as a similar percentage noting that nothing has helped them grieve during the early periods of the pandemic when the survey was conducted (Co-op Funeralcare, 2020). Meanwhile, some have suggested that there could be a rise in complicated grief (Eisma, Boelen and Lenferink, 2020; Gesi et al., 2020) and long-standing trauma (Masiero et al., 2020). Others have been researching the variety of rituals that have been adapted during the pandemic to understand if, and how, they have benefited people and what they may say about cultural approaches to remembrance and mourning (e.g. Wagner et al., 2020; BRIC-19, 2021).

Throughout the pandemic, we have all witnessed how things have fundamentally changed – at some level, COVID-19 happened to each and every one of us. However, it has also become clear that these changes have not been the same for everyone, nor have they affected everyone in the same way. Some of this variation between our experiences has resulted from our personal circumstances. Those who live alone will have faced different challenges to those who have been surrounded by family members. Those who have been furloughed will have experienced different stresses to those who have been working from home or on ‘the frontline’ in care and supermarkets. Each of these experiences will again be distinguished by whether or not there were children who needed to be home schooled or other caring responsibilities to be fulfilled. There has also been much talk about the emergence of a ‘new normal’ (Berwick, 2020; Zinn, 2020), but also a realisation that we cannot simply return to the way things were; some of us have sustained permanent personal losses, others are continuing to struggle with the impact of the symptoms of long COVID and we have all been altered on some level by our experiences of 2020. The widespread nature of these deaths also means that, at some level, our ontological security — that is our sense of a stable mental state that can be linked to sense of continuity we have in relation to our lives (Seale, 1998) — is likely to have been affected at a deep and existential level.

In summary, the phenomenal structural, physical, professional, and personal changes caused by COVID-19 have had a yet untold consequence on us all. Yet, this is a good time to reflect and document where we are right now in terms of loss, death and bereavement. Doing so will allow us to reflect in times to come on our resilience and our emergence from what has undoubtedly been a transformative experience.

The making of the collection: editors’ reflections

In 2020, our colleagues in the School of Languages and Applied Linguistics self-published A Multilingual Decameron: Stories of a different world. In it, they mimicked The Decameron, a 14th-century book of short stories from a variety of experiences written during the Black Death, having solicited students’ written accounts in a variety of languages that reflected on the early weeks and months of the pandemic. Inspired by their work, we discussed how Open Thanatology (the research group at The Open University that focuses on death, dying and grief across the life course) could do something similar to capture experiences of loss, death and bereavement during the first year of the pandemic. We reached out to our colleagues to discuss ideas, learn about processes, and finally bid for research funding within our Faculty to support the creation of this edited collection.

As we discussed our ideas, there were many decisions we had to make. Who do we want the contributors to be? How will we gather stories and reports, acknowledging the ongoing nature of the pandemic and that people are living with grief? What do we mean by ‘loss’ – is it limited only to when a person dies? Our answers to these questions at times developed organically, but they were also shaped by the demands of time-limited funding and our desire to capture this moment in time, as the narratives were at their most vivid in the minds of the contributors and before they got shaped by the passing of time and multiple retrospective interpretations

One of the decisions we made was to call for contributions from the OU Family – students, staff and alumni. For those unfamiliar with The Open University, it was founded in 1969, predominately providing distance education, and is one of the largest universities within Europe. It has over 175,000 students, over 2 million alumni, and nearly 10,000 staff in