Kathryn Mannix Posts

Tackling grief with a munchkin and related literature!

A longer version of this article called “What I learned about grieving and how to explain sad rituals to children” was published on my TOI blog called Bibliobibuli .    

 

A few weeks ago my maternal grandmother, my Nani, passed away. She was the last of my four grandparents and the great-grandmother with whom I grew up. My grandparents and great grandmother were a part of my life. They were also for me examples of living history, my very real connection with the past, to a period of history that stretched as far back to the nineteenth century. Now all of a sudden with Nani’s passing it is gone. All our lives Nani had been an anchor for my brother and me. She was always there for us when we were children and later for our children, her great-grandchildren. If I am feeling bereft you can imagine how the great-granddaughters are feeling.

They have been trying to come to terms with their grief, not quite aware that they are also mourning their Badi Nani. Whether it is their physical reaction or the conversations with the children, both experiences have been spectacular. In terms of the physical absence of their great-grandmother the children are trying to relate it to the recent past. Upon being told that Badi Nani had gone to another place, the youngest child wanted to know why she went when she — this grandchild–had quite regularly given Badi Nani juice. It is incomprehensible for little children that one moment a person exists and next moment vanishes. My eight-year-old daughter Sarah cannot understand why Badi Nani’s bedroom is being cleaned pretty thoroughly. She does not realise tthat it is not only a practical way of disinfecting the room but it is also a ritual that helps the grieving adults to come to terms with the devastating loss. All that my child is concerned about is “but Badi Nani’s special smell will go away from the clothes in her cupboard!” (How do children figure these things out beats me?!)

When we got home after cremating my Nani, my eight-year-old daughter Sarah was curious about what happened to Badi Nani. She is still too young to process the passing away of an individual or even internalise the philosophical concept of mortality and death. Oddly enough the child was restless for most of the night. Early in the morning, around 1am, I had to take her to the swings in the playground. While swinging she suddenly remarked pointing to the night sky shining with stars, “There is Badi Nani. She is the brightest star shining golden in the sky.” Then she was ready for bed and slept deeply till late morning. It was as if she had completed a circle with her great-grandmother.

The following day was the burial of the ashes. Sarah decided to make a card to bury along with the ashes. The card was in shades of bright yellow as Sarah knew that yellow was Badi Nani’s favourite colour. Then of her own accord she added her postal address on it “in case Badi Nani wanted to visit her” and signed it “your loving great-granddaughter”. The reality of the ashes and visiting great-granddaughter later in life was one big mush in my daughter’s head but this slice of magic realism gave the child peace. Astonishing how children negotiate reality!

While pondering over these sad days I thought of the books that have stayed with me regarding grief upon losing a dear one or even how to broach the subject of death. Of course this year’s absolutely marvellous publication is Dr Kathryn Mannix’s We Lost the Art of Talking of Death. In it she shares case studies from her many decades of experience in palliative care. It is a stunning book that everyone should read even if it gets a little difficult to do so at times, but it is very sensitively told. From this attitude towards death as well as nuggets of information can be gleaned to share with the younger children in the family immediately after a bereavement. In children’s literature, some equally memorable fiction are Patrick Ness’s dark but very moving Monster Calls about a boy who is trying come to terms with his dying mother and is kept company by a monster who tells him stories. Sahitya Akademi award winner Paro Anand’s short story “grief (is a beast)” in her latest anthology of short stories for young adults called The Other: Stories of Difference is about the young narrator coming to terms with grief at losing a parent and realising “Grief is a beast which feeds off silence. The more you keep inside, the more you feed the beast.” Haitian-American novelist Edwidge Danticat’s young adult novel Untwine is about Giselle who has to learn to untwine herself from sharing her life with her identical twin Isabelle after the latter’s death in an accident. British poet and storyteller Michael Rosen’s moving picture book written upon the death of his son —  Sad Book. More recently Indian publisher and writer Richa Jha’s sensitively told picture book Boo! When My Sister Died is about a sibling and her family coming to terms with the loss of the sister. Australian children’s writer Ken Spillman’s is an exquisite picture book The Great Storyteller about the grief at the passing of a wise and great storyteller, the elephant, which leaves his friends in the forest devastated. For a while they are incapable of doing anything except to mourn his passing by sharing memories and participating in what can be considered one long wake.

‘When we lost The Great Storyteller, we lost his stories. Every story gives us a new beginning. Each story took us on a fantastic journey. Our imagination made them real.’ 

Slowly they realise that the pain at losing a friend will always exist but with time it will dull. More importantly they can make their own stories and “imagine colourful worlds”. Laughter and cheer returns to the forest being aware that the treasured memory of a beloved companion will never fade even though there is a physical absence of the individual. It is a beautiful book in introducing the concept of death, the accompanying grief and the healing process to children.

In many cultures there are distinct rituals for death which usually help the grieving family come to terms with the loss. More often than not children are shielded from the event by being whisked away during the funeral. Later by way of an explanation for the physical absence of the individual, a simple story is trotted out for the children. The beauty is that the story usually works effectively! So I am curious to know about more the stories, whether folktales, poetry or books, that deal with explaining death to the young.

Do write and share your stories!

25 August 2018 

“With the End in Mind: Dying, Death and Wisdom in an Age of Denial” by Kathryn Mannix

Bereaved people, even those who have witnessed the apparently peaceful death of a loved one, ofen need to tell their story repeatedly, and that is an important part of transfering the experience they endured into a memory, instead of reliving it like a parallel reality every time they think about it. 

And those of us who look after very sick people sometimes need to debrief too. It keeps us well, and able to go back to the workplace to be reqounded in the line of duty. 

….

Cognitive therapist and palliative medicine pioneer Kathryn Mannix’s With the End In Mind is a collection of medico-narrative stories which focus on the stages of dying. Usually the stories focus on terminally ill patients as it is in such scenarios the patients and their families are anxious and fearful of impending death. The stories are based on decades of her experience with the NHS in UK. They are stories which work equally well as case studies and for the benefit of getting the point across well at times Dr Mannix has clubbed together experiences of more than one patient in one narrative. These are grouped in sections such as “Patterns”, “My Way”, “Naming Death”, “Looking Beyond the Now”, “Legacy” and “Transcendance”.

The stories included in the volume are extraordinary. It is not only the magical quality to the storytelling of experiences while sitting by a patient’s deathbed but it is the calm sense of peace and kindness that pervades every single story. Undoubtedly the crippling anxiety that grips every patient and their families as death approaches has its impact on the families. Every one has a different response mechanism in managing the situation. These may be defined by an individual’s choice of the cultural codes of behaviour they have learned to adopt while processing the dastardly news. The stories are about the experiences of all ages of patients including those who have died in hospitals or those who have died at home surrounded by family. It is always the conversations about dying with every person and their caregivers that may never be easy but has to be conducted.

Notice how often you hear euphemisms like ‘passed’, ‘passed away’, ‘lost’, in conversations and in the media. How can we talk about dying, plan our care or support those we love during dying, theirs or ours, if we are not prepared to name death?

There are many conversations recounted that are memorable for demonstrating to a lay person and the medical professional that certain bedside manners with a large dose of humility, patience, honesty, level headedness, cultural sensitivity, and empathy are required when on a death watch whether offering solace to keening mothers who have lost their babies or even the elderly.  There is one particularly straightforward conversation the “leader” ( head of the hospice where Dr Mannix worked as a young physician) had with a WWII French resistance woman called Sabine who wears her Resistance Medal and who withstood the terror of war and yet was afraid of death. She was an elegant eighty-year-old inmate who was always well mannered and well turned out. Kathryn Mannix was a young trainee in the new speciality of palliative medicine. Her trainer was the consultant in charge of the hospice who had a good rapport with Sabine as he was bilingual and would at times converse with her in French. So when he decided to have the conversation about dying with her in the presence of the nurse to whom she had confided her fears and the young physician Kathryn Mannix, no one was prepared for how the conversation would develop. For the young Kathryn Mannix this particular episode was transformative and has lived with her throughout her career as if on a cinema reel. It formed the basis of her future practice, teaching her to be calm in the face of other people’s storms of fear and “to be confident that the more we understand about the way dying proceeds, the better we will manage it”. She realised over decades of clinical practice that:

The process of dying is recognisable. There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did ( and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own. 

It is curious that Dr Mannix refers to the “art of dying being a forgotten wisdom” as coincidentally historian and chronicler of Delhi and accomplished Urdu translator Rana Safvi mentioned that she has read an account of daily life within the Red Fort during Mughal times where existed a category of women called khair salla waaliyan. They were employed in the Red Fort presumably by the noble families. Their job was to look after well being of the family. They weren’t necessarily nurses or care givers but who could make people feel good.  She thinks their job was to look after the emotional well being of the people being left behind the dying person. None exist now. It is only the professional mourners like the rudalis who continue to exist in Indian society.

[bwwpp_book sku=’97815011732400000000′]

Preparation for death is culturally specific too as with the Swedish ‘Döstädning’, or ‘death cleaning’ which is the focus of Margareta Magnusson’s The Gentle Art of Swedish Death Cleaning discussed beautifully in Christina Patterson’s essay “The ‘new hygge’: downshifting for death“. Journalist Arifa Akbar in her interview with Dr Mannix asked a pertinent question noticeable by its absence in the book itself:

AA: The people whose stories you tell in the book do not ever talk about God or an afterlife. Did you edit out these discussions? (You have said that you didn’t want to discuss religion in the context of end-of-life as it can be polarising and unhelpful.) Could you say if some patients do talk about this aspect and if it is helpful to them?

KM: People’s spirituality manifests in different ways. Where this is a religious faith, then people do discuss God and their hopes, anxieties and desires for an afterlife, as well as measuring their personal worth against the constructs of their faith. I’ve met people hopeful for heaven, fearful of hell, anticipating reincarnation, angry with God, or leaving their fate entirely in Divine hands; I’ve met people with no belief and at peace with the idea of oblivion, and others feeling sad at the ending of self-awareness; I’ve met people who have lost their longstanding faith in the face of the perceived injustice of illness; I’ve met people who discover a faith amidst the emotional storms of terminal decline.

Dr Mannix offers some thought provoking options to initiate conversations about dying as well as a way for the mourners to come to terms with their grief such as death cafes where people in similar situations could gather and share their experiences. She also provides template of a letter with possible points to consider for having a conversation about dying. She shares a list of resources that can be considered to prepare for this ultimate stage of life and recommends watching Australian intensive care specialist Dr Peter Saul’s TED Talk “Let’s Talk about Dying” ( Nov 2011). She also acknowledges Dr Atul Gawande’s books too.

With the End in Mind is a devastatingly powerful book of which extracts must be made available freely. It is certainly a book to be read cover to cover and take its learnings to heart, make them your own.  Persuade those who are anxious about the deteriorating health of their loved ones to read it. It is going to be a near-impossible task, but try nevertheless.  It is unsurprising that this book is on the Wellcome Book Prize 2018 longlist. Well deserved recognition!

Kathryn Mannix With the End in Mind: Dying, Death and Wisdom in an Age of Denial ( William Collins, an imprint of HarperCollins Publishers, London, 2017. Pb. pp.340 Rs 599 

12 March 2018 

 

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