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Death & life
7 min read

How to face the space of death

Losing family and friends across a life, leads Natalie Garrett to navigate the space of death we all face. Part of the How to Die Well series.

Natalie produces and narrates The Seen & Unseen Aloud podcast. She's an Anglican minister and a trained actor.

An experimental image mixes distance people with watery paint-like filters of green .
Jr Korpa on Unsplash.

Death is something I’ve thought about quite a lot. As a bereaved friend, granddaughter, niece and daughter. Also, as an Anglican priest who has pastoral responsibility for those who are grieving and who conducts funerals. And as the mother of children who live in a vicarage and hear a lot about Mummy and Daddy doing funerals, too. Death is a part of our life in a way it doesn’t seem to be in a lot of families. 

My first experience of death was when my grandfather died; I think I was about six. My memories of it are mostly about how the adults behaved. I remember, with uncharacteristic clarity, the evening when Grandma came to tell us that Grandad had died. I don’t remember what she said but I remember the feeling in the room. I remember it feeling as if someone had sucked all the air out, as if we were floating in a strange and uncomfortable space. I remember sitting in the kitchen with my mother not knowing the rules of engagement for this situation and feeling scared by that. 

And in my experience, over the many years since then and in many different situations, I think most people faced with death for the first-time experience that same fear of not knowing how to be in the space of death; “I don’t know what to say”… 

While I was a student, I had a friend who was the only Christian any of us knew. He also had cancer and didn’t have long to live. He made the choice do what people his age who didn’t have a death sentence to carry around with them were doing and went to Uni. He was one of the bravest people any of us had ever met. And at his funeral, a whole load of us from Uni turned up to pay tribute to this amazing young man who had touched so many lives by the way he had so courageously lived with death. 

I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture.

One of my daughter’s godmothers died of bowel cancer. She was one of the most faithful Christians I’ve ever known. When she was diagnosed, the whole church prayed for her healing. But the cancer grew and the chances of survival shrank. But wow did she use her last few months, weeks, days well. She wasn’t afraid of dying so she talked openly about it to everyone and the healing that came from how she lived then was powerful and widespread. She was an incredibly organised person and wanted to make sure she tied up all possible loose ends, like selling her house. She told with such joy about the conversation she had with the estate agent who came round to value her house who asked all the usual questions, “So are you looking to move soon? Where are you going?” I can only imagine his face as she answered with complete honesty about where she knew she was going. And I remember, with a powerful mixture of emotions, the conversation I had with her when I went to say goodbye. “I’ll see you there.”  She said as I closed the door behind me. 

Several decades after that visit from my grandmother, as a grown up and now a Christian, I had the privilege of conducting my grandmother's funeral. Grandma had been such a huge and influential part of my life and it was unthinkable that I should lead the service and not be allowed to be a grieving granddaughter – but it was even more unthinkable to risk someone else doing it, in case they didn’t do it “well”. I visited her in a Chapel of Rest, a couple of days before the service, so that I could say what I needed to say and cry as much as I was able. As I led the service and thus guided my family through the process of saying goodbye to the matriarch of our clan, I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture. Because as a Christian, I know something, I know Someone, bigger than death. 

Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. 

There’s a famous story in the Bible when Jesus’ friend Lazarus died. Jesus isn’t there while Lazarus is ill, in fact he isn’t there when he dies – he turns up four days later. In the Jewish culture of which Jesus was a part, there were all sorts of rules to comply with around death and one of the traditions was to gather the local community, including professional mourners to weep and wail, to encourage the expression of emotion.  

Lazarus’s sisters were angry that their good friend Jesus hadn’t been there when they needed him. They were angry that their brother, Lazarus, had died. They were angry and needed someone to blame. I think we can all relate to that. When someone we love is suffering, when someone we love dies, a natural part of the grieving process is anger. And that anger is often directed at God, whether we believe in him or not. 

When Jesus arrives, he generously receives their emotional rebuke, allowing them to give voice to their pain. And then he goes to the grave where Lazarus has been lying dead for four days. And in the shortest verse in the Bible, we are privy to his reaction. Jesus wept. Even God is distressed by the reality of death. Death was never meant to happen; death was never part of God’s good plan for humanity. And it makes him weep. He turns up, unafraid of the raw reality of death and bereavement. 

Of course, in that situation, there was a reprieve – Jesus raised Lazarus from the dead. And the mourning turned to celebration. But of course, although we never hear about Lazarus’s final death, he did die, just like all the rest of us.  

Death is the one thing we all have in common. Different cultures react to death differently. In some cultures, the entire community stops doing normal life and gather round the bereaved. In our culture, all too often, we pretend nothing has happened. We are determined to keep death in a box, packed as far deep as possible so we don’t have to look at it. Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. The Christian friends I’ve known who died untimely young deaths have shown me that. People who are not afraid of death, people who know what’s going to happen after they’ve died can pave the way for us to walk into the place of death and find beauty there. 

As we face death head on, we stare into the place of what’s really important. Everyone says glibly that on our deathbed we won’t be wishing we’d spent more time at work. But let’s not wait till our deathbed to work out where we need to spend more time. Let’s learn how to live well now, not hiding from the only guaranteed fact of our future. 

At Lazarus’s graveside, Jesus made the rather elliptical claim:  

“I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die.”  

When Jesus died himself, naked and nailed to a cross, he took on the greatest enemy of life. And he won. As Jesus rose again on the third day, he claimed victory over death. As Christians follow Jesus through this life, they do so in the assurance of eternal life with him after death. Wow, that’s the place of hope. That’s the place where you can look death right in the face, unafraid. 

The Christian message of hope is a life raft in the cold, choppy waters of bereavement. It gives form and shape to something we don’t understand and don’t want to have to navigate. It gives us courage to accept the truth, when we really don’t want to. Knowing that there is something, Someone, who is bigger than death. And knowing that death – either my own or that of someone I love – isn’t the end of the story gives me the capacity to walk confidently and unafraid through my life towards its inevitable end. And into what’s next. To quote my friend, I hope I’ll see you there. 

Article
Assisted dying
Care
Comment
Death & life
6 min read

What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.
An image of a woman wearing formal clothing is overlaid by a BBC logo, a programme logo, a sound wave illustration and a caption.
Today Programme post about Esther Rantzen's comments.
BBC.

"What do you make of Esther Rantzen?" asked my brother. 

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject over a number of days.  

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium. 

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission. 

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.” 

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live. 

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life. 

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated: 

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working. 

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family. 

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety. 

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance. 

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage. 

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.  

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end." 

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.  

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.