Opening up conversations about death

This is a post I've written for a blog called Not Being Morbid, hosted by Emma Edwards who is also the facilitator of Bristol's excellent and vibrant Death Cafe.  I'm reflecting again on what excites me about getting involved with a community of people eager to open up conversations about death and dying - what an inspiring bunch!

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Maybe it’s just me but death seems to be everywhere in Bristol this year - my head is exploding with the smorgasbord on offer! You can find a Death Café, and a whole range of death-themed events, in this year’s Mayfest (connected to the International Public Health and Palliative Care Conference 2015), take tours and create art at Arnos Vale Cemetery and, in October, see Bristol City Museum’s new exhibition – a cultural exploration of death. 

It’s all good news to me, and I guess it’s just proof that when you are sensitized to something you start to see it everywhere. My journey towards wanting to understand and talk more about death started when my mum was diagnosed with the terminal illness Motor Neurone Disease in 2010. She moved very quickly from absorbing the shock of the diagnosis to wanting to live her precious life as fully and wholeheartedly as she could, inspiring others as she lived. She died in 2013 but one of the gifts since she passed away has been to find myself in almost daily conversations about death, grief and loss.

Initially, I found myself wanting to talk and write about the cruel disease she suffered from, which took her movement, her speech and her breath in rapid succession. I knew MND from my scientific studies as a neuroscience PhD student, and it exasperated me that 15 years later we still hadn’t cracked why people get MND or found a way to cure it. But I know it’s not through lack of trying – there is a huge community of dedicated researchers and health professionals making slow but sure progress on diagnosing and treating MND. And I realised that what I was really looking for was an explanation for her death, hoping, even, that if I could understand it then perhaps I could magically undo her tragedy.

Over the last year, however, I’ve found myself wanting to step back from the details of MND to the broader questions of how we live well and die well. I’ve been really inspired by books like Atul Gawande’s ‘Being Mortal’, challenging us to embrace death as a part of life, and to question the role medicine does and should play in shaping the end of our lives. Through my mum’s story I find so much that encourages me to be more honest about the inevitable relationship we all have with death; in turn that has also helped me to embrace life more fully.

One of my mum's sculptural ceramics - becoming

Working with Emma and others at Not Being Morbid, we're hoping to hold a series of events in Autumn 2015 that offer people more opportunities to talk about death and loss. We want to create events that are inspiring, honest and heartfelt. My mum was an artist and I’d like to show some of her nature-inspired and life-affirming work, and invite others to contribute their work and their stories. Emma and I are also putting together a programme of events, including workshops, talks and films, all touching on different facets of death and dying, loss and grief.



It’s all with a view to opening up more mature, nuanced and honest discussions about the end of life. To my mind, we can't talk too much about it.

Coming back to the blog

A lot of time has passed since I last posted.  I've been to Indonesia for nearly 2 months, writing and enjoying the incredible softness and warm-heartedness of Bali.  I met so many wonderful and significant people there, people who had experienced death and loss in many different forms, and who were willing to share their stories with me.  As a result my project is undergoing a gentle but steady evolution.  Like a river, it's now braiding into separate strands, that may fuse together again at some point....

One stream that I want to follow is to create a space for people to discuss and share their losses and griefs - a death cafe, if you like.  It seems to me we have so little opportunity to do that, and one of the striking things about Bali was the ease with which people talk about, celebrate and incorporate others into the experience of death.  In Balinese Hinduism, the belief in reincarnation is absolutely core, but whatever we think about what happens after death I feel we could benefit from having more about death and loss in our lives!

My hope is to create an exhibition, drawing on my mum's work and my own, that creates and holds a space for people to share their experiences, reflections and creative work about living and dying.  I would hope to include my mum's beautiful ceramics, alongside my writings and some other pieces I want to create.  The idea is embryonic, and there is a lot to prepare and think about, but I will keep you updated.  Likely date is May/June 2015 in Bristol.

In parallel, I'd like to pursue some writing that helps to share the developments in research and clinical practice for MND.  Having just attended the Motor Neurone Disease Association Annual Symposium in Brussels (Bali to Brussels - big shock!) I was inspired by the enormous energy and dedication of people working on MND.  I'll post something on the session that struck me most - on end of life decisions - before Christmas, but I would really like to help give voice to all of the activity and ideas that are emerging in the field.  I've just sent off the first emails requesting interviews from some of the people I met at the meeting, my voice having dried up to a harsh squeak at the meeting itself!  First up will be Dr Martin Turner from Oxford, an incredible thinker, researcher and clinician that I first met in January 2014 and saw again in Brussels.

I'll try to post more often, and to get some other writing online!  New Years' Resolutions abound.

With love and warmest wishes for a creative and peaceful New Year,

Pip