“She finds language for everything stifled by the dark silence that society insists on draping over the dying”

The first time I stumbled across the words “death doula” they clobbered me. Strong words made stronger by the drum of their alliteration, but that wasn’t it. It was the startling directness about a matter that concerns us all, and which we talk about rarely and only in swerving euphemisms. Not with us anymore, not long for this world, to pass away, to lose the battle with, to lose one’s life… as though it were a wallet in the back seat of a taxi driving away. I liked that frankness and I feared it. Also, I had no real idea what the term meant.

I understood vaguely what death doulas must do only because I was familiar with birth doulas: trained professionals who provide emotional, physical and educational support to mothers before, during and after labour. Thirty-eight years old and an entire profession a mystery.

“You know that Leonard Cohen song?” Annie Whitlocke asked me early on. ‘Where there’s a crack that’s where the light comes in? Well, where there’s a crack – at the hospital, with the doctors, in the family – that’s where the death doula comes in.”

Annie lives in a suburban house in Melbourne that’s distinguished from its neighbours only by the string of Tibetan prayer flags on the front porch, batting in the breeze like lashes. That, and the fact that the backyard contains an enormous gold-painted Buddha and the living quarters of a senior Tibetan Buddhist monk.

Annie has to tilt her shaven head backwards to look up at most peopIe through glasses that magnify her already large eyes, and has a habit of emphasising emotionally exciting information with a puff of breath that reminds me of a small child playing with a toy car. This lends weight to her own evaluation of herself: childlike in the Buddhist sense of ‘beginners mind”.

She hates the word client. Finds it extremely hard to accept money for the work she does. On the one hand, she is highly trained and has to be able to support herself if she is to continue providing this type of service. On the other, she would not be as effective at what she does if it was simply a commercial transaction. She is a perpetual intimate stranger.

The boundaries of Annie’s work are bespoke to each job, necessarily unclear and always shifting, but most days start the same when she wakes in darkness: shortly after her alarm goes off at 4.15am, Annie says the Buddhist prayer known as the Four lmmeasurables. May all beings have happiness and the cause of happiness. May they be free from suffering and the cause of suffering… Then she listens to ABC Radio National while she boils water, squeezes a lemon and prepares for more prayers at her altar, setting an intention for the day, which is to be of benefit to others. By 6.10am she is at the park walking the three dogs, Lady – zipping across the oval, her hind legs tethered to her dog-wheelchair – and old Bob and Missy limping along under the rising sun.

What follows varies. Yesterday she drove across town to visit a single mother looking at an early death. Her goal for the young woman: to help her live without thinking of dying so she and her child can enjoy their remaining time together. Towards this end, Annie will teach her mindfulness meditation so that she can just have a bit of a break by resting in the present moment rather than constantly thinking and thinking about the past and the future. Also, Annie will inform her about advance care directives – instructions regarding her medical treatment for when she is no longer able to voice them herself. Having read a book with her son from Annie’s vast collection, the woman is now working on creating her own book for him, intentionally speaking to the stages he will go through without her – some kind of preparation for when the time comes. Annie’s goal is to help the woman and her child in whatever way she can in order “to develop a safe place, a healing place within themselves”.

“It’s just wonderful,” Annie explains, and I say something that indicates agreement while inside I experience a racing panic followed by a retreat into a place that feels far away from this woman and her child and their books and Annie’s “wonderful” but which I know is not.

Though she once texted me with an offer to be my death doula should I die in time, and on another occasion discreetly sent through a picture of the flower arrangement on a corpse she had recently “washed and shrouded”, Annie s interest in dying and death cannot accurately be called morbid because there’s nothing gloomy about her. It’s less the case that these are topics she discusses too much; more that we discuss them too little.

Annie’s schooling was truncated at 14. She has been, among other things, a dressmaker, a funeral celebrant and a truck driver, steering a four-tonne Ford tray on the roads for 18 months. She’s completed courses in neuroplasticity and pastoral care and grief counselling and mindful self-compassion. She’s taught yoga and breath control and meditation. She’s written, self-published and sold 10,000 and 11,000 copies, respectively, of her Pocket Guide to Positive Symbolism and Eastern Gods and Animal Spirits. She has skydived out of a Cessna from an altitude of 14,000 feet. She’s had seven surnames, returning last to her first. Her grandfather died in her arms, her baby nephew died in her arms. She’s been married six times and tried to kill herself twice. She’s had six miscarriages and two live births. And she’s died once.

Radical acceptance of uncertainty and impermanence is what one may expect of a person who shares her home with an enormous gold Buddha and a monk, who is currently eating his lunch out back. But Annie’s focus is less on letting go and more on letting in; finding language for everything stifled by the dark silence that society insists on draping over the dying and those they leave behind.

She holds up a wool bundle cinched with pink ribbon: a mock-up baby carrier she is trying to present to hospitals to help grieving parents connect with their dead babies. “It’s soft,” she explains, holding it like a football and giving it a good squeeze. “When a little baby has died and it’s just in a blanket, it’s so fragile, you don’t want to hug it. But that child can come home, and the other children can hold it, or the extended family, because everyone is touched by that.”

After the death of her newborn grandchild, Annie saw that people simply did not know what to say. And that silence is to grief what petrol is to fire. “We’re not told about how to respond to a situation like that,” she explains.

And we don’t necessarily do it any better at the other end of the age spectrum. She cared for her auntie who was in her late seventies. Stage four pancreatic cancer. Annie’s mother warned her, “Now, don’t talk about all your death stuff with Betsy, we don’t want to upset her.” So Annie went into the bedroom, where she saw that her aunt was in pain.

“How are you going?” Annie asked.

“Good, I’m fine,” Betsy replied, from bed.

“So what do you know about your situation?” Annie asked.

“Well, I know that I’m dying.”

“Do you want to talk about it?”

“I do want to talk about it,” Betsy said, “but people won’t let me. They keep saying, ‘You’ll get better.”

So they started talking. “What do you want to tell everyone?” Annie asked her auntie.

“I want everyone to be kind to each other,” Betsy replied.

“This is one of the things I’ve learnt,” Annie says to me. “Everything that was so important – we’ve gotta do this, achieve this – when faced with our mortality, the simplest things become the most significant. Kindness. Patience. Gratefulness. And that doozy of all things: forgiveness.”

Betsy felt that she was a failure as a mother. She felt that in her life she’d been a failure; that she could have done things better. Annie started pulling items out of a box of Betsy’s memorabilia in the bedroom. Things that had been completely forgotten, things that reminded Betsy of her successes. “The victories that she’d had in her life that she had totally trivialised because the negative things were just taking over her attention. Which is quite common, isn’t it?”

Annie is about to speak to students at a course on secular spiritual care for the dying. It’s run by Joe Sehee, who started the Secular Spiritual Care Network, now a charity known as Social Health Australia, based on his experiences as a humanist chaplain at a hospital. This kind of “emotion-existential support” is usually offered to hospital patients according to their religious affiliation.

Historically, if you ticked “Not religious” on your admission paperwork, no one would – or even could – offer to come visit you. And, indeed, Joe will step down from his current patient support role at the hospital in a few weeks, when the role is confirmed as the exclusive domain of the established religion.

Joe’s goal is to make emotional-existential support more accessible. Towards that end, he would like to build a community of secular compassionate carers who can provide support to those with different, or no, belief systems. We do not currently have a bureaucratic vocabulary for this idea, but it is essential for our wellbeing and its further development is why 15 people are sitting in a semicircle inside a cosy outbuilding of the Habitat Uniting Church on this brisk morning. Aside from Annie and Joe, they include death doulas, social workers, funeral celebrants and a public servant.

After morning tea, Annie sits in the centre of the semicircle and introduces herself to the group. She is sufficiently nervous that she has prepared comprehensive speaking notes but when she starts talking she does so authentically, eloquently, and unaided by those notes. The sun is a sharp slice under the drawn blinds, but enough makes it into the room to dance in dappled patches on her scalp while she explains that the people she visits will share things with her that they keep from their doctors. How she handles that. She speaks about how she doesn’t feel she’s there to ‘cheer up” anyone. Sadness, she says, is not a moral failure and it’s not a disease. She has no right to put a cover over that. She’s there to be with them in whatever they are feeling at that time. She speaks about the opposite impact, on a person in palliative care, of words from their loved ones to the effect of “don’t give up” or “keep on fighting”. How some people in the dying phase have expressed to her, privately, a certain guilt at maybe not having tried hard enough.

And then she shares the stories of some of the people she has sat with. The young woman. End stage. In and out of consciousness. Heavy painkillers. Dark room, Damp air. Tiny voice. Annie asked, Would you like it if maybe l gave you a hand massage? Yes, please, the woman replied. I noticed the blinds are pulled down. It’s a beautiful day outside, would you like me to open the blinds so you can have a look? Yes, please. It’s about 23, 24 degrees. Would you like me to open the window so you can have some fresh air? Iles, please. Would you like some music? Do you like harp music? Yes, please.

A young couple whose baby died in hospital. They were hugging their child, which the woman’s mother found distasteful. Holding a dead body. Don’t do that, she told them, put it down, they can take it away. This was their first child, Annie says. So she made the point of referring to them as the mother, as the father. No less so because their child had died. The woman’s mother found this, too, extremely confronting, Annie explains. As the parents hugged the bundle that contained their child’s body, Annie gently asked, Would you, too, like to hold your granddaughter? Yes.

“A simple, little thing like that can have a profound effect. Actually for generations,” Annie says, as rain suddenly buckets down, pelting the window behind her.

Sometimes, at the baby memorial services held at Monash Hospital, Annie will see an older female relative, the grandmother usually, get up and light a candle. And sometimes that woman will later say, extremely softly, to Annie: I had a miscarriage 30 years ago, they told me not to talk about it. I lit this candle for my baby. This person would’ve been holding on to that for decades,” Annie says. “The courage, the bravery, to get up in front of their family, who knew nothing about it, and light that candle…”

An 18-year-old girl whose mum was unconscious. End stage, brain cancer. Though they had divorced, the girl’s father was planning a religious ceremony in a church for his ex-wife. Mum would hate that, the girl told Annie. Annie asked if they had spoken about her wishes before the mother became unconscious. No, she said. Mum wouldn’t. She just kept thinking she was going to get better.

A man in his early 40s, terminal. His family knew nothing about his wishes. I have tried so many times, he explained, but they won’t let me talk about my death. “We’re not going to talk about death,” Annie says, zooming out. “Cause talking about death is going to kill us. Just like talking about sex is gonna make you pregnant, talking about muffins is going to make us fat.” The room laughs; needs to.

Another story, another. A young woman, brain dead, car accident. After she died, her father thanked Annie for her help. Annie responded by saying “Tell me about your daughter.” Well. He started talking about things he had never known, how he couldn’t believe the stories her friends were calling to share with him. How his daughter had been the wise one in her friendship circle, the go-to, the fixer, the helper. How proud he was of her. How devastated to learn this, to know her truly, only now.

Annie will speak directly to the person even if they are unconscious. She was called in for such a man. Greeted him by name as he lay in his hospital bed. Introduced herself. He can’t hear you, said his wife. I understand, Annie said, sitting beside her and explaining that, according to Buddhist belief, hearing is the last sense to go. “It’s really important,” she tells the group, “to keep speaking even though it looks like the lights are out and no one’s home, because we just don’t know.”

Annie told the man’s wife that she should keep talking with him. Share the stories of your family, Annie said, what you’ve done together. Let him know that these are the lessons that you’ve learnt, share some of the funny things, just keep talking. Then Annie excused herself, saying she would be going. “Martin, l’m leaving now,” she told the man from the foot of his bed. “And I’m going to pray for you.” He opened his eyes, looked directly at her. Said very quietly, “Thank you.”

A perfect example, she tells the group, of how we just don’t k now.

Edited extract from The Believer – Encounters with Love, Death & Faith, by Sarah Krasnostein (Text Publishing, $34.99)., out March 2. Reposted with permission from Sarah Krasnostein. (Original: https://www.theaustralian.com.au/weekend-australian-magazine/where-theres-a-crack-thats-where-the-death-doula-comes-in/news-story/96e528b969ff9c77e5f29826a839c650 )