TRANSCRIPT
It’s not unusual for a group of people to get together to talk over tea and cake.
But a recent gathering in Sydney’s Newtown had another very specific purpose - to talk about death and dying.
At a busy neighbourhood centre, ten strangers attended what’s called a ‘death café’.
It’s part of a growing global social franchise, as facilitator Melissa Halliday explains:
“A death cafe will open up conversations. There's no agenda in the death cafe. So it will open up conversations that may flow in unexpected directions with a lot of humour. There's always a lot of honesty in a death cafe.”
Personal stories range from caring for lost loved ones to recovering from near death experiences. Participants include 76-year-old Nina Angelo has twice faced her own mortality, including surviving lymphoma which had spread to her pelvis and spine.
“In 2019 I was diagnosed with a stage four lymphoma. My cousin, who is an associate professor of nuclear medicine rang me and said: ‘Nina, you have to have the chemo, it's really bad and you've got to hit it quickly and fast’.”
Six rounds of chemotherapy followed, during which Ms Angelo lost her vitality along with her bouncing red hair. She says the love and support of family and friends was crucial.
“While I was lying there and so weak and my family, my twins, my boy girl, twins were there caring for me. People were coming from everywhere. On the 1st of January, 2020 when I was so ill, my friend came and collected me from my place and took me down to the lagoon in front of where I live, which I call my happy place. I had a walking stick, she was holding me up when I got there. There were about 25 women friends all there dressed in the brightest colours. There were pendants hanging, there was a carpet and a seat for me there. And they were doing a big honouring for me. It was so overwhelming. And they presented me with a coat that they had been making every week, the women had got together and made this coat, which I called it the magical coat of the Healing Hearts. And they presented me with that coat that is all part of the healing, the amount of love that came through.”
Four years later, Ms Angelo is doing well, and says the cancer diagnosis, combined with a severe fall three years later, have taught her a lot about resilience.
“Even though my body was broken, breaking down, my spirit really came to the fore and went, no, you're going to be around for a while. Look at me now.”
Ms Angelo has Greek heritage and her family history is as traumatic as the events she recently survived. She arrived in Australia as a child in 1949 after the second World War, with her European parents who were sent to a concentration camp during the Holocaust.
“My mother was a young Polish girl, 16 years younger than my dad. And she was on the run from when she was 16 and she saw all her family being taken, her brother survived and she found him after. And my father was a Greek man, a Greek Jewish man, and he was an elite prisoner in Auschwitz. And then the war ended, they were taken on their death marches in different directions. And then they met in Paris in the Red Cross canteen.”
Still bearing tattooed numbers on their arms from their time in Auschwitz, Ms Angelo’s parents made a new life in Sydney alongside extended family.
“They celebrated life, they danced. My father was an importer. He bought the first Italian records into Australia. We had music always. They spoke 13 languages between them. We had people from everywhere. So, our lives were full of people and gatherings and parties and love.”
Ms Angelo’s family history and her own health challenges touched many in the death café group, including 61-year-old Willian Roach, who for 10 years listened to crisis calls as Lifeline volunteer. He welcomes the opportunity to speak candidly about death and dying.
“I would love to see more of these because there is an invisibility about death. We just do not have these discussions. It's not in our face. It's not something we think about. We need permission to explore these issues publicly without fear of being judged. And I think death cafes are a wonderful way to actually start to pull that cover off invisibility.”
Facilitator Melissa Halliday has run death cafes for the past decade after working as a lawyer and funeral director, celebrant and dementia care volunteer. She says death cafes provide a very valuable community service.
“So it began in 2004 by Bernard Crettaz, Swiss sociologist, anthropologist and then John Underwood in London picked it up in 2011. So it's been going for 12 years. It's now in 85 countries and it is a phenomena. We do come, particularly in the west, from quite a culture of death denial where everything's medicalised, people end up going to hospital and it's very hard to get out of that system. It is really important to have those conversations not only about how I would like to die, would I like to die at home? What does a good death mean to me? What would I like to leave as my legacy? Would I like to be cremated or buried? What are my green options? These conversations we need to have with family and friends.”
Participant Eric Yeung cared for his wife as she died of lung cancer, and is now President of cancer support service CanRevive. He says in the Chinese community, speaking openly about death challenges many cultural norms.
“It's a taboo in Asian culture, in a lot of the Asian community, people don't even talk about the cancer. They don't talk about they don't want to go to the hospital, bad karma going to the hospital. Some people don't want to get treated because of some of the cultural taboo and differences. And part of the work of CanRevive is to bridge that gap.”
According to the federal government, over the next 40 years, the number of Australians aged 65 and over will more than double and the number aged 85 and over will more than triple. Palliative Care NSW CEO Kirsty Blades says despite living longer, few people discuss their end-of-life plans.
“Palliative care has a real focus on the living. But to live well to the very end does mean that you need to think about what dying well means to you. And that's where death cafes and forums like this become so important as they have that facility and that forum for open conversations around death and dying. And that can be incredibly useful and really empowering for people. Often that first conversation may only happen at the time that you're given a life limiting diagnosis when you're forced to consider your mortality. And that is already an incredibly stressful time in your life. So really trying to encourage people to think about it a little bit before then so that that's not one of the things you are dealing with.”
Ms Angelo agrees and hopes soon to discuss the subject of her own death with her twin children, now aged 50.
“It's something my kids somehow just, they just don't want to go there with me. I don't want to leave things undone. I don't want to leave things. I don't want them worrying, frightening, fighting or anything. And being a celebrant myself and having done funerals, I know what goes on in families, so I wanted to talk to them. Because it's the most normal thing everyone's going to. It is about the courage it takes to actually go into that place and share it. And that's what fills my heart.”
