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This week marks Dying Matters Awareness Week, and to recognise this, David – author of our recent Life after cancer piece, is back to share his thoughts on death – in particular, his recent visit to a Death Café – something he describes as being a “remarkable” experience.
David’s piece also coincides with Macmillan’s current ‘Let’s Talk About Death’ campaign, which seeks to encourage people to have conversations about death and plans for it. You can find out more on Macmillan's campaign, alonside information and support on making plans, via this page of our website.
The doctors, huddled at the end of my hospital bed are muttering, just out of earshot. My sister is staring at me, trying to lock my gaze, as if she is searching for an answer, or a reassurance of some kind. I feel powerless and diminished, tired and brittle, certain that I am about to hear bad news. In recent weeks my energy has dropped, and my temperature has soared. Clinicians, from various disciplines, drain blood from my veins and send it to labs where I imagine it is scrutinised and analysed by scientists in white coats. I endure CAT scans, PET scans, cardiograms, lumbar punctures, and endless ward rounds. The doctors turn towards me. The muscles tighten in my jaw. And my anxiety grows. I struggle to breathe, and in growing desperation, I repeat the question in my head. ‘Am I going to die?’
Throughout my teens, twenties and thirties, I believed, without question, that I was indestructible, that my youth would protect me from all serious illnesses and death. Old age and infirmity were far off lands. At most, my eventual death was an abstract concept, not grounded in any way in my experience. I seldom thought about my mortality and when I did, it was not for long; my thoughts were fleeting. I was too busy living to think, or care, about dying, at least that’s what I told myself.
Yet death was never far away. As a child, I sat in consternation as the parish priest impressed upon us the possibility that we would burn in hell for eternity. My mother worked on busy hospital wards when we were teenagers, and she’d often tell us about her day over dinner. ‘We had a death’, she’d say, in a matter of fact way. And as an adult, death quickly became a critical part of my identity – the AIDS epidemic defined the hopes and fears of a generation of gay men.
I lost a steady stream of relatives – my father, 30 years ago; all 4 grandparents; aunts and uncles; a cousin – as well as friends, colleagues and people I’d helped and supported. I reflected upon my losses at the time and some episodes of grief were more easily managed than others. But I never seriously thought that I would ever die except in abstraction, and I rarely considered what I would do if my death were imminent. Their deaths were theirs; the losses, sometimes difficult to bear, were ours. Some people were willing to talk; for others, myself included, the pain of the losses and the fear of death were sometimes too difficult to tolerate.
Recent events have changed my feelings about dying and death. I want to talk seriously, to prepare. Some people refuse to engage, ‘everything will be fine’, they say. Of course, I hope so too, but what if it isn’t fine? What if I am close to the end? At first, I was annoyed by their dismissals. In time, I began to realise that it was just too hard for them, as it had once been for me. But still I struggled. In the end, I wish that we were all more used to talking about death and dying – a concern shared, I discovered, by Swiss Sociologist Bernard Crettaz. After losing his wife in 2005, he developed the idea of Death Cafes: pop up, non-religious events designed to bring strangers together – over a cuppa and a piece of cake – to ‘break the tyranny of silence’ that surrounds death.
Attending a Death Café is a remarkable experience. I was struck by how friendly everybody was and how moving it was to talk, and to listen to others, to share our concerns and hopes. There were practical things to discuss: getting wills in order; sorting out pensions; putting money aside for funerals - transactional things that bring peace of mind. I talked about where I want to be cremated, the service I want, where I’d like mourners to gather afterwards, and where my ashes should be scattered - in full view of the sweeping bay of my hometown. In death, I would like to return to the place that made me. We discussed how to talk to the people we love about each other’s deaths, how to tell them that they are important to us, and how to give them opportunity to ask questions.
Being ill has brought me significant benefits, not least an unexpected deepening of the relationships with the people closest to me. In being able to talk about death, my life has been immeasurably enriched; a new kind of peace and self-understanding have come to me. I am still scared, of course, but I am ready – ready to live, ready to die, and critically, ready to talk.
For anyone who might have an end-stage prognosis, our End of life group is a place where members can discuss its impact, and talk through their thoughts and feelings. For family, friends and carers, our Supporting someone with incurable cancer group’s there for you – here you’ll find members to talk to who are going through a similar experience.
For more information about Death Cafés, and to find local ones in your area, visit DeathCafe.com.
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