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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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 |
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.
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