28th of December, 2017. Really, really important date for my family. My parents 60th wedding anniversary, their diamond wedding anniversary. My siblings, our spouses, our children. We are all gathering that weekend for a family celebration. Unexpectedly by me. This is the date my publishers chose as publication day for my book about stories about the way people live while they’re dying.
With the end in mind, that was my attempt to try to wrestle the ridiculous misunderstandings about dying and bring ordinary dying back into public consciousness. And my publishers were not particularly amused when I said that I was not gonna be available for interviews, for media, for any of that stuff.
It was grim. But actually, I was so relieved. So relieved because I was hiding. And I was hiding because in telling genuine stories, stories from my 30 years working in palliative care teams and hospice and hospitals, I was breaking that unspoken but precious pledge of confidentiality between clinician and patient.
’cause you cannot ask permission to tell stories of people who are already dead. It’s just awkward, you know?
So I was dreading being in trouble and I had been anxious as I collected my stories. I’d been anxious as I wrote the stories. I’d been very anxious as I pressed send to the publisher, um, when they got back and said, we think this is gonna be a best seller. I laughed. They were right. It’s now in. 18 languages.
So there are now 18 different language sets of people who might be cross with me about telling these stories. And on the Sunday evening, I looked at my Facebook. Now a brief aside here about middle-aged women and Facebook, um. In 2017, I knew nothing about social media, which is funny, isn’t it? ’cause I know a lot of you now through social media, but I was kind of a social media virgin in those days, and I only had a social media as many women in my generation had in order to know whether my children were alive.
Okay? So I saw this notification and it was from somebody who was outside my, it wasn’t a friend of a friend, and I, my heart sank. I thought, this is, this is it. This is the first one. They’re coming to get me
and I pressed to open it and this huge message appeared and I’m paraphrasing, but roughly this is what the message said. Dear Dr. Catherine, I sat beside my mom as she was dying seven years ago, and I listened to the noises of her breathing as she choked. And as she struggled and as she was drowning and as she was moaning, and it was terrible, and it went on by day and it went on by night and more days and more nights, and then even more terribly, it stopped, except for me, it didn’t stop.
And I heard those noises in the silence. They woke me from my sleep. I could not get away from the noise of my mother’s breathing in the last few days of her life. And after two years, my family doctor diagnosed post-traumatic stress disorder and sent me for psychotherapy, and I’ve been in therapy for five years.
Yesterday I read the story in your book where your first boss in hospice explained the process of ordinary dying. To a patient called Sabine. Oh, I remembered Sabine. I remember my boss describing to a very, very frightened woman worrying that she might get overwhelmed by pain as she was dying about the process of dying.
About how as time goes by, people lose energy, become more weary, need in fact sleep rather than food and drink to recharge their energy. I see you nodding ’cause I know you know this story. And as time goes by, people are awake for shorter periods of time, asleep for longer periods of time, dipping in and out of unconsciousness until they’re eventually unconscious all of the time.
And the unconscious brain only does two things. It still hears. And it provides these strange reflex breathing cycles that we never otherwise hear, in which we don’t clear the back of our throats. And so there are rattling noises. It’s a small amount of fluid. It’s air moving in and outta the, the lungs.
Everything is working, but nobody knows that until eventually during one of the periods, usually have quiet breathing. There’s a breath out. That just isn’t followed by breath in, and Hollywood doesn’t show us that, does it? I’ve said that phrase about Hollywood about a gazillion times in my life, but I’ve never said it kind of in Hollywood before.
Okay. And my correspondent said to me, Dr. Catherine, I read that story and I recognized everything that had happened to my mom. And I realized that there had been suffering in that room, but it wasn’t hers. It was mine because nobody explained to me. I didn’t understand that she was safely unconscious, safely dying, and it was okay last night.
I slept through the night for the first time in seven years.
And I’ve practiced so hard not to cry. As I told you that story and that moment I just thought, you know what? For all of that worry, for all of that anxiety, for all of that fear of doing the wrong thing in order to do a right thing, I think every single family whose story is told in that book would be glad for this woman.
But that was the first message. There were a couple more. The next week. There were 12 more the week after that, and it became a flood. There have been hundreds, maybe a thousand or more messages from people who did not understand ordinary dying, who were traumatized by then not understanding ordinary dying and their misunderstanding of it.
And it made me think, how did we forget? My grandmother understood ordinary dying because she watched it as she looked after people at home with her sisters and her mom and her aunties. Because in 1915, people who were dying lived at home and were looked after by their families. By 2015 when I took or early retirement to try to do something about public misunderstanding of dying, nobody had seen it.
So in that a hundred years, what had happened was advances in medicine that are so fantastic, but they’ve distorted our understanding of dying. Instead, what we all know about now that we didn’t talk about a a hundred years ago is labor giving birth. Another process with clear phases and stages that we make TV programs about, and we get it right because there are complaints if we don’t.
So everybody understands that bodily process, and this other one has become the one that we have misunderstood. And so the stories that we hear are the stories of when it goes wrong, when it’s difficult, when there is struggle, when there is distress, when there isn’t sufficient pain control. And that does happen, but mostly it doesn’t.
And mostly people go away quietly, bereaved to grieve. We’ve lost a sense of the proportion of ordinary dying that is okay. Might not be your best day, but might not be your worst day either compared with the tiny proportion that we still need to get right. That might go wrong. So let’s think about air travel.
’cause I’ve been thinking a lot about air travel this week. Okay. If you only knew about air travel, what you see as newspaper stories or in the media. Would you ever get on a plane? Okay. And we are laughing because we do still get on planes. We understand that what gets into the media is true and tragic and dreadful, and we don’t want to be on the plane that that happens to.
But we also understand it’s a tiny, tiny slice of this kind of massive pie of air travel. 200,000 flights, 6 million people. Every 24 hours around our planet, some of them even arriving with their luggage. So we need to reclaim the stories of ordinary dying that are not being told so that we can understand it again.
Now when we think about birth and labor, we all know people who’ve given birth to a baby and they’ve told us about it. In eye watering detail over and over again. Yes. Now that is a really important thing. What that person is doing is they are taking an experience that is awesome and overwhelming. And they are turning it into the story by which they understand it and they transplant it into a different part of their brain into autobiographical memory where it becomes not this awesome thing that’s still happening to me, like my correspondence, still hearing her mother’s breathing, but into a thing that happened to me once.
So all day we’ve heard about storytelling. And storytelling really matters because it’s how we make sense of our experiences for ourselves, and it’s how we give those experiences to other people so that they can benefit from understanding them too. It’s our way of making our memories safe. It’s our way of our own sense making.
Stories really, really matter. So here we are. We have had the most wonderful day. We have heard wonderful stories. Is there anybody in here who hasn’t cried yet? Okay. I, I lost count after five. I just stopped counting. How many cries I’d had We replenished. We’ve had a day in family with our people, with the people who understand the things that make sense to us, but we’ve got work to do end well because those stories are still not being told.
Those stories are not being heard. Those stories are not reaching the public. We who work at the end of life are still serving people who don’t know what to expect and who have an imaginary terrible death in their minds. We need to give them those stories back. So are you ready to go out and be listeners?
Are you ready to go out and be listeners? Yes. Are you ready to go out and be storytellers? Yes. Are you ready to go out and encourage those quietly grieving people? Yes, to have the radical bravery to tell their stories of ordinary dying to other people because they won’t do it unless we enable them to do so because the world says dying.
No, I don’t want to hear that. But the time has come, the time of story making is here. We have sent a day at Unwell listening to and telling stories, and we are going out now guys, we’re going into the world and we are going to be the ministry of Stories. Let’s go.
