All the time in the world … and all we have is now

I had a lovely time last week.  I talked about death for seven days.  I don’t mean that lightly, flippantly, facetiously. Contrary to popular opinion, I am not a morbid goth, fascinated by skulls and graveyards (apparently I have earned the title “Queen of Death” from a colleague. A dubious title for a Macmillan nurse and teacher).

My week of events spanned four counties and consisted of 2 death cafes (Bradford and Hebden Bridge) , one conference, nine talks, two workshops, four exhibitions (Rotherham, Leicester, Hebden Bridge and Bradford), zero budget, and many, many conversations.  I don’t want to list all of these the events here, but I would like to try and capture here why the week felt so important to me, professional and personally.  The vivid moments.
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When people talk about death with a stranger, the veneer of social conventions begin to peel away.  In a death cafe the uniting feature is explicit permission to talk about death.  So without any need for weather-speak, or the perpetually baffling “what is it that you do?” it is possible to say “why have you come today?” and immediately see the person.
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So Isobel (not real name) whose mum-in-law died two years ago and who still couldn’t understand why her partner and his father grieved so differently, one taking every opportunity to talk about her, the other closing up like a sea anemone in rough waters.  We talked about grief, it’s confusing, unpredictable nature.  We talked about tears at funerals.  We talked about how we rewrite stories of those we have lost to make them squeaky clean and perfect.
Or Desmond, energetic and vital at 87 years old.  A committed Christian who is still making sense of an experience in his twenties that can only be described as a spiritual vision, an “inflow of grace”, that he believes happened to reassure him that death is not the end.
Or Eve (name not changed, she’s my daughter) who observed that she a bit busy at the moment to think about life in general, but when she does stop and think about when she hasn’t been doing anything she realises you can’t get those moments back.
Or Esther, a single mum from the West Coast of the States, in the UK to do a research degree, who suddenly realised she hadn’t made a will and wondered what would happen to her little girl if she died.
Or Sanjit, the engineering student who wondered out loud if his grandfather was dying, but didn’t understand why nobody at home talked about it when it seemed so obvious to him.  He mused about how he would like to talk about it if it were him, to make sure he’d said the things he wanted to say, and to make sure that he could be at home with his family.
Or Katie, a childrens’ nursing student, who when baking a mountain of cakes for the Death Cafe dropped and spilt flour all over herself and the kitchen floor.  On the verge of grumpiness she was suddenly struck by the preciousness of life and realised how often we get wound up and upset about things that ultimately really don’t matter.
Or Aaron, who didn’t see his baby daughter until she was four because he was in prison.  When asked what he wants to be remembered for he says “I want my girl to know that it doesn’t matter how crap it gets, you can always turn things around.  Nothing stays the same forever.”
Or Adrian, who felt like he said goodbye to his mother several times as she travelled the delicate and long road of Alzheimers, that it had taken years to not feel guilty at the relief he experienced when she eventually closed her eyes permanently, that he could remember the good parts again now.
Or Mary, who having managed to be spectacularly unsuccessful at committing suicide as a young girl, became a community activist and trainee death doula who travels regularly to local hospitals to support people at the end of life, and has noticed that the only things that really matter are love and honesty.
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The play “Learning to Die” by Luca Rutherford offered a raw, funny and hearty window into the world of chaos, of death being always unexpected, of the rupture that it creates in normal world that – for a time, at least – allows us to suddenly see the ridiculousness of life and our day-to-day priorities (“green tea, not coffee, in case I don’t get time to drink it straight away.  Coffee is horrible when it goes cold, green tea is still nice”).  The song played at the close of the play was the one played at the death of my friend Josh .  I sat and cried, relieved to be in the company of people who didn’t mind tears.
At our conference a mother spoke about navigating the uncertainty of living with dying, of knowing that her beautiful daughter is going to die but not knowing when.  She shared how along with the exhaustion and fear that this brings, there is a richness and a purity to daily life that shines through her words.  An appreciation of the moment, I guess.  Sometimes it is only when time is short that we realise this, but it doesn’t have to be this way.
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We heard from Martin Neal about Groundhog Grief -the way that people with dementia can forget, again and again, that someone that they love has died, and the ethical and emotional issues that this raises for the people who care for them.  Jan Oyebode considered the nature of continuing bonds, the ways in which people sustain connections and memories of relatives and ancestors long after they die, and the ways in which these can offer a source of strength in difficulty times.  Karina and I introduced our archeology study also exploring continuing bonds, albeit in a slightly unusual way.  It was a week full of conversations, thought and reflection about mortality.  Yet it was far from miserable or morbid…
Death is a perpetual threat that dictates our daily choices, our societal norms, our attitudes towards others, other inclination to help the sick and needy.  But mostly we do not think about it, at least not consciously.  But death, a little like the monster under our bed, is scarier when it in peripheral vision than when we look  it in the face.  Epicurus thought that there was no point in worrying about death, since when it happens we won’t be conscious of it anyway.  But I don’t think death is what most people worry about; I think people are scared of the process of dying, of disentangling ourselves from our worlds, of losing those we love, of facing indignity and suffering.  In an increasingly secular world, it often becomes less a matter of the afterlife and more a matter of this transition from life to death that causes concern.  We worry about meaninglessness, we wonder about what it has all been for, we puzzle about why we get close to people even though we know we will lose them one day.

The Buddha tells a story of how a woman named Kisa once sought his counsel to heal her dying child; he advised her to go and obtain a mustard seed from a household in the village.  The only condition was that this seed had to be obtained from a household where nobody had died.  The woman bounded off, joyful that the Buddha had offered to perform this healing ritual, to fend off death in her sick child.  From house to house she travelled, asking the same question.

Of course, she found no such house.  Every home was affected by death, everybody has experienced the sting and gaping void of loss.  With time Kisa came to know this, to return to her child and sit with him until his last breath.
We seem to have forgotten this wisdom.  Death is fended off and defeated at every turn, our medicine becomes stronger and better and more advanced, our technology enables us to perform microsurgery, replace broken parts, extend our warranties seemingly indefinitely.  When death arrives it is a shock, an affront, a failure.  Because it so often accompanies the withdrawal or withholding of a medical treatment, it becomes a matter for blame and analysis, a decision for a (very human) doctor to make.  Not rescusitating someone is viewed as giving up on them.  Identifying someone as in the last year, or last days, of life is synonymous with sentencing them to death.  But death is as natural as birth, and as inevitable.
For me, the week fell just before submitting my MPhil Transfer Viva, and brought some revelations about work-home balance (“really?” says hubby… “you only just realised this needed attending to…?!”) and the rapidity with which children grow and change, the daily choices we make about being present or being absent, and the ways in which neglecting to look after ourselves has consequences for those around us.  I’ve made choices in the light of the weeks’ events about my own life.  I have also noticed more about those around me, realised how ubiquitous is the impact of death and grief on our communities.
Ultimately, thinking about death is really about life.  It is about our priorities and our plans.  Stephen Levine’s visionary book “A Year to Live” asks us to think about what we might do differently if we knew out prognosis…and then challenges us as to why we aren’t making these changes now, given that in reality none of us know what is around the corner.  What would change in our relationships, our routines, our perspectives, if we were genuinely aware of our mortality?
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So reflecting on Dying Matters Awareness Week 2015 I have one conclusion: it is not sufficient to talk about it for one week of the year.  Carry on talking.
Talk about death with friends, families, neighbours, people at the bus stop.  Make plans and then do them.  Create harmony in your communities.  Look out for people who are alone and grieving.  Smile at strangers.  Enjoy the rain as well as the sun.  Don’t wait until people are gone to tell them what your deepest heart says.  Do it now.
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3 thoughts on “All the time in the world … and all we have is now

  1. Dear Colleagues,
    Excellent and poignant piece;
    we- careif – published 3 series of essays on the theme of Compassion & Care ( In Conversation with Compassion and Care; You can find them on our website and link;

    http://careif.org/in-conversation-with-compassion-and-care/#more-358

    These essays evoke a great deal of emotion, cultural sharing and resilience; Our last set- Series 3, on Gender- feature an essay from a colleague in Italy who organise their Death Café in Padova
    Please share with others; and contribute your own essays for the next series;
    Willing to discuss further;
    Thanks
    Albert

    Co-founder and Director.
    The Centre for Applied Research and Evaluation- International Foundation. (careif)
    Centre for Psychiatry
    Wolfson Institute of Preventive Medicine
    Barts and The London, Queen Mary’s School of Medicine & Dentistry
    Old Anatomy Building
    Charterhouse Square
    London EC1M 6BQ
    England

    CAREIF – Centre for Applied Research and Evaluation International
    Foundation – is an International Mental Health Charity
    Visit our website: http://www.careif.org

    Twitter @careif

  2. Great blog very touching too , I too went to see the play , I also attended the conference in Bradford . Well done to the students who arranged the death cafes etc , such enthusiasm and passion great to see .
    We came to the same conclusion last year ….Dying Matters every day , we need to talk frequently not focus on one week of the year . We held our first Death Cafe thus week it was very moving to hear people talk about their personal thoughts , feelings , and experiences in a place safe to do so with coffee and cake !

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