By Caroline Lloyd
Firstly, I’d like to mention that I was delighted to be invited by the glamorous death squad, Death and the Maiden, to write a blog for them. As the geeky person, it’s always a welcome surprise to be invited to join the cool gang!
Once the excitement had subsided, I started wondering what would an audience used to death brain fodder find interesting about grief? So, I asked, and the answer was to post about why I wrote ‘The Book’. Initially I thought that would be easy, but then I realised everything I ordinarily write is research based; factual, painstakingly disseminated from the experts. Writing from a personal perspective is a different prospect altogether. So here goes…
Many years ago, when I was 22 years of age, my friend died from cancer at the age of 26. If this occurred today, my response would be something like; “Wait. WTF. I can’t deal”, followed by a string of sad emojis and possibly a gif of a sad, wailing waif. It would be posted on social media with the expectation of lots of supportive, empathic messages in recognition of my loss. Instead, it was pre-internet so there was no support because he was ‘just’ a friend.
“Everything I ordinarily write is research based; factual, painstakingly disseminated from the experts. Writing from a personal perspective is a different prospect altogether”
At that time, all my grandparents were alive, so this death completely shattered my assumptive world; I had assumed that I would die when I was old, and like my great grandmother, have sprouted a beard any hipster would be proud of to keep me warm during the winter months when I ran out of coal for the fire. This mindset can be perfectly normal for someone who has not yet experienced a significant death. As this was pre- internet, there was very little bereavement or grief information. I found cliched poems in the cancer hospital chapel and someone mentioned ‘stages’ and ‘getting over it’ after ‘time heals your wounds’. I never did subscribe to the ‘do not stand at my grave and weep’ mantra, my attitude was and still is, “It’s my grief and I’ll cry if I want to, so f*ck off with your patronising, prescriptive crap”. What I did know, is that my emotions were all consuming and it affected me in other ways too. I quickly learnt that grief is not just emotional, for me it was cognitive and spiritually challenging too. In order to “#deal” became a befriender volunteer in a cancer hospital, in order to try to normalise and make sense of my experience.
“I quickly learnt that grief is not just emotional, for me it was cognitive and spiritually challenging too”
After many more deaths and following another significant bereavement twenty years later, the post internet world is full of bereavement research papers, and textbooks are widely available online thanks to people like Colin Murray Parkes, Therese Rando, Robert Neimeyer, Ken Doka, George Bannano, Stroebe & Schutt etc. I despaired that, despite all this published information, people were still saying the same old shite such as “you’ll be fine when you get over it.”
The only way I can describe this bereavement is to compare it to a nuclear bomb going off in my world. I really couldn’t imagine any shoots of life appearing ever again, so all the platitudes and outdated ‘advice’ just made me angry and determined to contribute in any way possible to changing this outdated narrative. Whilst I was able to access some academic information on grief and bereavement online that was open source, I still had to understand the technical jargon. Once I did, I soon realised that I identified with the research findings and that it was a lot more helpful than anything anyone had ever said to me. It was therefore particularly frustrating that this information had been gathered over the past twenty to thirty years, but had not filtered down into everyday language or to non-academic people. This information is instrumental in helping us understand not only what we are experiencing personally, but also gives an insight into what may be happening with others. For example, the way you grieve may not be how someone else grieves, but that doesn’t mean either of you are doing it ‘wrong’ or ‘right’.
When new thinking or innovations are produced in most fields, the popular press and social media are quick to promote them. But grief is different; journalists are still largely regurgitating what someone else (non-experts) has said before them, so there is no new knowledge or understanding, and can be inaccurate or out-dated. No ‘ah-ha!’ moments for the bereaved or most professionals who support them.
“The way you grieve may not be how someone else grieves, but that doesn’t mean either of you are doing it ‘wrong’ or ‘right’”
Unwittingly, after many years of being a volunteer befriender and various other roles with cancer patients, their friends and family, both pre-and post death, I then inadvertently added ‘bereavement researcher’ to my alternative resume. Although if I’m honest, most people thought I was a bit weird for pursuing this thirst for knowledge, so I didn’t really drop it into casual conversation. The question “what do you do when you’re not working?” at dinner parties is usually answered with “travelling, socialising, playing sport” or whatever, not “researching grief theory”.
My frustration with the information not reaching the bereaved only grew, particularly with increasing academic knowledge, so the next step was to become a Cruse bereavement volunteer to share this knowledge and help support others. I trained to support clients, facilitated bereavement support groups, joined the management committee for my branch, attended every grief and death conference I could find, and helped train new volunteers. I also volunteered on the national helpline at Christmas and undertook further training in traumatic grief, child death, and trained to support grieving children and young people.
Following this training, most clients, and most bereaved people I have met feel woefully uninformed about what is ‘normal’ when grieving, which echoes my personal experiences. In response to this lack of informed knowledge, a friend suggested I start blogging grief theory in an accessible way for everyone. The blogs had a fairly significant reach across many countries (over 60 to date) and I have received many messages from the bereaved, and people supporting the bereaved, which shows the impact and need for research based information that’s easy to understand. I then moved into formally researching for a PhD in bereavement to undertake research that will be impactful and to further disseminate findings. For the uninitiated: a PhD is otherwise known as ‘give up your life for the foreseeable and see how much criticism, and caffeine induced states you can endure’, as someone who clearly has no other hobbies, I am loving it.
“Most clients, and most bereaved people I have met feel woefully uninformed about what is ‘normal’ when grieving, which echoes my personal experiences”
All of the aforementioned activities led to an email from Jessica Kingsley Publishers asking me if I would be willing to write a book on grief. Initially I thought “no way!”, I’m not a writer, I’m ‘just’ a bereaved person trying to help other bereaved people. But then I realised that after many deaths over the past thirty years including three suicides, one infant death, two perinatal deaths and several family and friend deaths, I knew I had sufficient life experience to understand certain aspects of grief from both my perspective and those around me. I also knew that my informal, and formal PhD research, and conference attendances had supplied me with significant amounts of theoretical knowledge, and that my many client and support group hours, and blog feedback, had richly added to my personal and theoretical information.
After many tears and cries of “I can’t!”, I agreed to write the book and started the painful procedure of sweating metaphorical blood, and real tears, over deciding what research to include and how to do it justice in an accessible way for everyone.
I wrote it in memory of those that have died and left scars on my heart that will never ‘heal with time’, those loved ones that I will never ‘get over’.
I wrote it to debunk those bullshite myths that I still hear even today.
I wrote it to help contribute to the normalisation of grief; it isn’t just emotional, and you can do it any way you like. I wrote the book that I so desperately wanted when I had disenfranchised grief and had no idea that that was even a thing.
I wrote it because I had experienced volumes of personal and professional experiences; the good, the bad and the ugly. I wrote it because it was the book I searched for when I had to write a book review during my Cruse Bereavement Care training, but it didn’t exist.
I wrote it to help those of us who support the bereaved. I created diagrams to explain concepts that appear repeatedly and demonstrate visually how these work. I included photos of my family and friends because we are all impacted in one way or another.
I wrote it to provide professionals with a secure knowledge base, that encompasses the very best of what we know from the experts. Their years of researching, writing, and commitment to understanding and helping the bereaved should not be unacknowledged by those that would find comfort in it.
I wrote it because I care, and I am one of them.
I wrote it because before my time is up, I would love to live in a world where it is common knowledge that you do not ‘get over it’, that there is no right or wrong way to grieve, that there are different types of grief, that grief is not just an emotion, and that it’s OK to tell people how you are feeling and what you need from them. I hope for the day when no-one has expectations of moving through stages as if they are linear, that social media and other news outlets will incorporate genuine empathy, understanding and contemporary research information.
When that day comes, I can use the excess books for firewood.
Caroline originally trained in supporting terminally ill cancer patients and their families in Texas in 1988. Since then she has volunteered in various pre-bereavement and bereavement roles for organisations in the UK including Cancer Research UK and Macmillan.
For the past twelve years her focus has been on researching and supporting those affected by anticipatory grief and the bereaved. As a result, she has been volunteering for Cruse in bereavement support, support group facilitation, as a committee member and helpline volunteer.
Having also undertaken specialised training to work with children and young people, and traumatic grief. Caroline is currently a Board Trustee and Lead Facilitator for the Resilience Building Programme with Roadpeace.
Her current focus is on completing a PhD in bereavement, delivering training on grief to professionals, and running workshops.