Article by Dr Esther Ramsay-Jones
On Christmas Day 2017, on my husband’s suggestion, we bought my mother a Dictaphone to record her memories and her life. Having taught English for many years, and being a relentless storyteller and chatterbox, Mum always had a lot to say. The following year, on Boxing Day 2018, she was rushed into hospital, having lost her speech, mumbling semblances of words that had once so easily flowed from her.
‘During that dislocating, jumbled time where words combined with other words to form sounds that no one around her could comprehend, one thing was clear and she repeated it with whatever half-words she could: this woman, with her determined, forceful spirit, did not want to survive without language. Though noises came, she had been rendered voiceless and misunderstood by a 3 x 2 centimetre glioblastoma that was growing in her left temporal lobe. This had frightened her beyond all measure. It was not the possibility of death that she feared, but time imprisoned in a mind that had no outlet; where people look on and attempt, if you’re lucky, to fill in your gaps; or, if you’re unlucky, rush on, unhearing, making impositions that don’t belong.’ – Extract from The Silly Thing: Shaping the story of life and death by Dr Esther Ramsay-Jones, Free Association Books, November 2020
Watching someone you love struggle to communicate is gruelling
Watching someone you love struggle to communicate, while knowing also that they are dying from the most aggressive brain cancer, is gruelling. You are rendered helpless as you bear witness to the tumour wreaking its havoc on a partner, mother, father or sibling’s identity. When given a terminal diagnosis, the patient too is in a situation beyond his or her control. Though there may be moments of hope of prolonging life and some opportunities to take back some autonomy (i.e., deciding how a funeral will be, advance care planning), family members experience intense anticipatory grief and what, in palliative care, we call ambiguous loss. We grieve someone who is alive, as memories, cognition and recognition, communication slowly ebbs away.
The Silly Thing: Shaping the Story of Life and Death charts the journey of my mother’s attempt to live and die with as much dignity as she was able with a glioblastoma multiforme; how she took charge of the dying process and communicated with openness and honesty throughout. It is also a book exploring what I have come to learn as a palliative psychotherapist, working with people dying of a range of long-term conditions, from cancer to MND and COPD, and their families; a book about the gifts that so many extraordinary ordinary people have shared…
When we push our fears underground, or bottle things up, there comes a point when feelings break through the surface and floor us. In talking and communicating about our grief, we are able to take some of the power out of our pain and make some sense of our experience: at times, this may free us up to continue to live. The sad reality is that life does go on when someone dies, the hole of loss does not diminish, but if we let it, life grows around the hole (Tonkin, 1996), bursts of colour gradually return. Yet, we need to articulate the sadness and anger and sense of injustice in order to release in words some of the weight of grief. This is not a sign of weakness but an intelligent act of self-care.
We also need to move our bodies through walking, running, getting outside in to nature, so that grief’s heaviness does not get located in our bones and muscle memory. Grief cracks us open to what we may have missed in our relationships with those who are no longer: while we can beat ourselves up with the what ifs and would haves and should haves, we can also use some of these revelations to engage more attentively and consciously each day as we continue our own lives, fundamentally changed through loss. But this is no easy feat, and sometimes we simply have to stop and ask for help. That is not a weakness but a sign of strength.
Dr Esther Ramsay-Jones is a lecturer in grief, bereavement and dying. She has written two books, Holding Time: Human Need and Relationships in Dementia Care (2019) and The Silly Thing: Shaping the Story of Life and Death (2020), both published by Free Association Books and available to buy online and in all good bookshops.