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DEATH AND DYING

Death and dying

DEATH AND DYINGPerhaps it's not surprising that MEN R US volunteers have talked about including a section on death and dying for years but never got round to it. Classic avoidance. Though we feel out of our depth, the COVID-19 pandemic has spurred us into action.

MEN R US has volunteers across the age spectrum. Those in their 60s remember the immeasurable loss of friends, boyfriends, partners during the HIV and AIDS epidemic while - at the other end of the spectrum - volunteers in their 20s whose closest experience death has been their 90-year old Nan dying, or something they've seen on TV. We are not trying to draw comparisons, but our lived experiences are very different and writing this section has been as difficult as it has been challenging.

What is death?

From a biological standpoint:

  • "The cessation of all biological functions that sustain a living organism."
  • "The total and permanent cessation of all the vital functions of an organism."
  • "The act of passing away, the end of life, or the permanent destruction of something."
  • "Irreversible cessation of all integrated functioning of the human organism as a whole, mental or physical."

More importantly, though, death may mean something different for you if you have a belief, or are a person of faith, or have a religion.

Faith and religion | MEN R US

Death is a certain

Despite its certainty, death is one of the least discussed parts of our lives. Furthermore, we'll take an educated guess that many of us would struggle to know how to start a conversation about death and dying. Why is this?

  • Traditionally, Western culture keeps death at a nice, safe distance
  • Out of sight out of mind, it's something best left to hospitals and funeral directors
  • We live in a culture of avoidance where we are conditioned to live (busy busy busy) not die
  • It's unsettling to talk about mortality, a fear of the unknown, so best not to tempt fate
  • Death can prompt us to reflect on what we haven’t done or accomplished in life
  • We can be embarrassed by asking friends and/ or family to handle matters after our death
  • The lack of (advance) planning can split families when making difficult decisions, especially if they are not accepting of homosexuality

The awkwardness, embarrassment and fear that death generates means we tend to avoid these essential conversations when we are well and healthy but also those people in our lives who are ageing, ill, dying or grieving.

Not talking about this stuff denies them (and us) the support and comfort needed when they need it most. It also undermines our capacity as friends, mates, boyfriends and partners to relate to those around us, shutting down our more compassionate and empathetic selves. It can also stir up and intensify feelings of isolation, regret and guilt for all concerned. Bottom line: this doesn't make us good friends.

Death do not always the result from natural causes. There is suicide, accidents, and murder to consider, which can place an intolerable weight on those left behind.

More recently, the trail of devastation chemsex can leave in its wake; and suicide among LGBT+ people which are disproportionately higher when compared to our heterosexual counterparts.

This is adult stuff and, ideally, we should be kind, available, and talk openly about death, particularly with those who need us. We do ourselves, and those who matter most in our lives, no favours by keeping death do distant for so much of lives, or until illness or tragedy strikes.

Death and dying and being LGBT+

You would think this was enough but death also throws up additional issues if you are LGBT+

  • You may experience discrimination: making legal arrangements, planning a funeral, or going head-to-head with family
  • Complexities and tension if you or your partner are a person of faith or religion
  • There can be assumptions about you or your partner's identity
  • Support can be variable, with little support during grief and bereavement
  • There is often an emotional toll on boyfriends, partners, husbands and carers left behind

LGBT+ publications

We have been pleased, if a little surprised, to find a number of LGBT+ publications that specifically deal with treatment and care, dying and death, and planning:

Your treatment and care: planning ahead for the LGBT community | Opening Doors London
Hiding who I am: the reality of the end of life care for LGBT people | Marie Curie
Fears about death and bereavement | NHS Education for Scotland
Queer funeral guide | The Good Grief Trust | Jun 2019
Lesbian, gay, bisexual or transgender people | Care Quality Commission
National End of Life Care Programme | June 2012

Articles

The AIDS epidemic’s lasting impact on gay men | The British Academy | 19 Feb 2018
We need to talk about death | Psychology Today | 9 Mar 2017
Era of the death sentence: our AIDS legacy | HuffPost | 6 Jan 2017
‘Archives of Feeling’: the AIDS Crisis in Britain 1987 | Matt Cook | History Workshop Journal | Vol. 83, Issue 1 | 2017
Body or soul: why we don’t talk about death and dying | The Conversation | 24 Nov 2011

"In my experience teenagers read about death and violence because they are fascinated by death and violence and as a society, we shy away from talking about it. When we talk about death – we talk it about it in a historical sense. We discuss the second world war and the tragic waste of human life, or we teach about the death beliefs of the Egyptians, but we don’t tell them what it was like when their grandfather passed away in a hospice, or what it was like when the boy from our class at school was killed by a truck while motorcycle riding. We don’t tell them what we think might happen after we die, we don’t tell them how we feel about it. We treat death like a terrible contagion. Almost as though we are risking the lives of our young if we talk about it – and I mean really talk about it – with them. It’s one of the few things that every single one of us face, and we often ignore it."

Young people are dying to talk about death | Lynnette Lounsbury | The Guardian | 8 Jun 2014

The five stages of grief

"Denial. Anger. Bargaining. Depression. Acceptance. Everyone knows the theory that when we grieve we go through a number of stages - it turns up everywhere from palliative care units to boardrooms. A viral article told us we'd experience them during the coronavirus pandemic. But do we all grieve in the same way?"
Elisabeth Kübler-Ross: The rise and fall of the five stages of grief | BBC | 3 Jul 2020

Kübler-Ross model | Wikipedia
Giraffe demonstrates stages of grief | Dr Red Shoe | 11 Jan 2014 | 1m 42s

More

Death and the LGBT Community: when culture is not defined by country | Death Cafe
Talking about death and dying | Dying Matters
The art of dying well | The Art of Dying Well
Bury your gays | TV Tropes
This trope is the presentation of deaths of LGBT characters where these characters are nominally able to be viewed as more expendable than their heteronormative counterparts. In aggregate, queer characters are more likely to die than straight characters. Indeed, it may be because they seem to have less purpose compared to straight characters, or that the supposed natural conclusion of their story is an early death.

What happens when you die? | AsapSCIENCE | 2 Mar 2016 | 3m 11s

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