She was going to be a gymnast. She was eyeing Commonwealth Games selection until she hurt her arm. Then she was going to be “a famous actress”. Until she realised she wasn’t. She was a DJ, with dreadlocks and a bindi, and a radio host on bFM and George. She studied naturopathy. She was a bit of a New Age hippy.
Then she thought she might go to medical school. A mate told her she was dreaming. Only geniuses, he said, got into medical school. She got into medical school.
Dr Amanda Evans, the woman who was never supposed to be a doctor, is now one of only two palliative-care specialists for children in the country. She has set up a charitable trust, Rei Kōtuku, to address the limited government funding available to dying kids in need of palliative care. The trust provides a free service for those kids and their families from Wellington to Hawke’s Bay. It provides medical help and, as importantly, emotional support.
She might, even ought to, have been destined for a pretty dismal future. She was saved, quite possibly, because she was clever. She says she doesn’t know that she’s clever. What she is, she says, is dogged, hardworking and good at rote learning.
She also suspects she is competitive – quite possibly, mostly with herself.
Evans was once in a stage play called Naughty Bad Girls. She has never been a naughty bad girl. Her mother, Julie, always said she trusted her. You can see why she might have wanted to be worthy of her mother’s trust.
She grew up with her mother and younger sister Fiona in Hastings. Her mother had her when she was 17; her father was 18. He spent some time in prison while her mother was pregnant. They got married. They were poor. Her father was violent towards her mother and they often had to flee from him.
“I remember being bundled into the car in the middle of the night. And she was driving, with him behind, and we had to drive to the police station for protection.”
She saw her mother being beaten up by her father. Her mother was also beaten up by one of her father’s associates, who she thinks might have been a gang member. There was a court case. Her mother was a witness and she went with her as a “support person”. She was 12. “It’s funny when I think about it now. Why was a 12-year-old being a support person? But I guess that’s one of the things about having a teenage mum. You end up growing up together.” During that court case, a gang member spat on her mother.
When she was about 11, her father phoned and told her a grisly story about how he had badly beaten up some guy and left him by the side of the road to die in a ditch. She told her mother, who said he was just trying to frighten them, again. They saw from the newspaper the next day that his nasty story was mostly true. She had to appear in court as a witness. Her father went to jail. She hasn’t seen him since. That he’s still alive is as much as she knows. Her mother died, aged 62, of bronchiectasis, a lung disease often attributed to children who grow up poor and who live in cold, mouldy houses.
You have to ask: why is she not a complete f--- up? “I don’t know!” Her sister isn’t, either; she’s an assistant principal at a private girls’ school in Wellington.
Fighting adversity
She is an optimist. She thinks she was just born an optimist. Also, “I think, in my childhood and through my early years, I’ve learnt to not let things stop me.” It might be in her genes. Her mother, she says, despite all that happened to her, was also an optimist. Her CV was as colourful as her daughter’s. She studied counselling, became a drama teacher and started a variety of businesses. When Evans started gymnastics, she became her coach.
She tells these stories about her childhood almost without emotion, as though they’d happened to another person. And they almost did really. She was that frightened child who grew up to be a brave adult and to make a career out of helping other frightened children.
She doesn’t think she is particularly brave. When she says she is competitive, I think what she means is that you have to be when fighting for the rights of people kicking against the shitty deals life has given them.
“I think the kinds of things that happened meant I was always interested in, how do kids fight adversity? How do people actually survive the bad things that are happening to them? I just want to kind of protect these kids and think of ways they can have the best life possible. No matter how long they live.”
She doesn’t think about her childhood. “I recognise that all the things in my life have shaped who I am – like all the dying children I have cared for shaped my practice. But my focus is on my own family now, being the best mum I can be, as well as my job, that I love, and advocating for children with palliative-care needs.
“I find no point looking back and thinking ‘poor me’ – I have seen that many times and it makes people bitter and sick. I accept what happened but definitely live in the moment.
“Children who are dying teach me that. I have seen incredible courage when facing scary things and my life pales in comparison.”
She says of her father: “My dad – he isn’t a bad person deep down. He was just young at the time and made stupid mistakes. I don’t feel any ill will to him, just sad for my mother.
“My mum was both a mum and dad, and she was enough.”
She has, then, inherited both optimism and a “don’t let the bastards grind you down” attitude to life, and death. She is tough, and tender. It is an endearing mix.
She lives in Thorndon in Wellington with her partner, Karl Pearce, and their two children, Nina, 11, and Jimi, 9. He is named after Jimi Hendrix. She and Karl are both music mad. They met at a Little Bushman gig in Leigh. Little Bushman, led by Trinity Roots frontman Warren Maxwell, could be said to be a niche band, with influences of Hendrix and 60s psychedelic rock. She and Karl are in niche professions.
“Probably about as niche as it gets. He always jokes about me being so sub-specialist that I kind of sub-specialised myself out of a job. My speciality is so niche that even people who work in palliative care don’t know about children’s palliative care.”
He can talk about niche careers: he paints Warhammer miniatures. Nope. I didn’t know what Warhammer was, either. That, again, is what the internet is for. It is a tabletop game in which warring factions “from ancient civilisations and upstart empires” attack each other, in wars that never end.
It took them only eight years to realise they should be more than friends. She had moved to Ghana to work as a paediatric doctor. He phoned to tell her he liked her and she realised she liked him. Which was not exactly the perfect timing. But they are both endlessly adaptable.
Their CVs must be labyrinthine. He has a degree in fine arts and was a schoolteacher. Then he decided to go into craft beer brewing before choosing to set up a business painting miniatures of crazily scary fighting figures.
They live in a little brick 1880s villa opposite Government House. They fell in love with it in 2021 when competition for house buying was at its maddest. She wrote a letter to the owners to tell them they’d fallen in love with the house and that it would be a family home and could they please buy it?
Manager of pain
She is very persuasive. She has to be. The trust runs on the smell of an oily handkerchief. An anonymous donor has kept it running with donations of $600,000 a year over two years. That funding was due to run out last year, but that amazingly generous donor has given them another year’s worth of funding, enough to keep them going until August next year.
Her niche job, then, is, to put it bluntly, helping kids to die. With as much “dignity” as possible. It sounds grim, doesn’t it? It can certainly be hard. She gets close to the kids and their families. Sometimes, she spends all night on the phone to families who are watching their child die. She is in rooms with families watching the child die. She is a manager of pain. She manages pain medically and emotionally and you wonder why anyone would choose to do it.
She goes to a lot of funerals. She spoke at the funeral of a 17-year-old girl to whom she had become particularly close. They would text each other every day. A story she told at the funeral: she and one of the palliative-care nurses had gone to visit the girl. When they knocked at the door, the girl’s dog went mad with excitement at the prospect of visitors. It was so over-excited it had a seizure and collapsed at their feet. She and the nurse went into full palliative-care mode and were reassuring the dog that “you’ll be all right, buddy. You’ll be all right.” Fortunately, it was. It’s a good story. In another ending, it might have read: palliative-caregivers kill kid’s dog.
And here is a very nice story. She had been visiting a boy named AJ who “was holding me at arm’s length”. She knew he was a huge fan of the American singer-songwriter SZA, which is pronounced Scissor and, yes, I had to look that up, too. In another of her careers, she did event promotions for the Rhythm & Vines festival. She still had contacts. She got AJ a backstage pass to meet SZA, who kept in touch with the boy and would video call him. When he died, she paid for his funeral. “Not every day a superstar befriends a dying boy.”
She will probably hate this as much as the angel description, but the formerly dreadlocked DJ who went on to become a doctor who helps dying kids might also be a kind of quiet superstar.