by Amal Awad
Management sat down with the Purple House directors and asked, are these stories so far apart, or is there a way to put them together? This led to the creation of a new type of story: one that includes lifestyle modification but also community leadership – it becomes a community development story. ‘And so what they’re saying is: the things that keep spirit strong are being on country, with family, looking after your sacred sites, doing things culturally the right way (the third circle in the strategic objectives), and having good communication with communities. But you can’t always predict that other world, that spiritual world, and people get jealous of each other.’
Sarah demonstrates the sign language for pointing the bone – a crooked finger. ‘So if you can keep your physical body strong, if you can get infections treated early, if you can try to eat the best you can on the income you’ve got, and go to the clinic for check-ups, maybe your physical body is able to act as a bit of a shield … and your physical body can help you to fight off that spiritual attack while you work out what’s going wrong.’
In this way, the discussion is still about returning people to country, looking after old people properly on country and making sure that grandkids learn their cultural heritage before the old fellas pass away. It also sends a message to look after the country and the hunting grounds properly, while looking after your family, thinking about environmental health conditions, encouraging kids to go to school, and encouraging people to go to the clinic. ‘And you’re fitting all those things together to have a strong individual, family and community health. Really it’s someone’s PhD.’
However, Sarah says that, despite the prevalence of these beliefs, she’s never met anyone on dialysis who isn’t keen for a kidney transplant. ‘Cultures aren’t static. And people have managed to survive for thousands of years in really harsh conditions – imagine being out in this weather in the desert, naked, where a sacred waterhole is literally a crack in the rock with a bit of moisture in it,’ she says.
Some have incorporated Christianity into their lives, fitting a different culture and religion into their worldview. ‘And you could say that that’s probably one of the reasons why people have managed to survive, because if they didn’t find a way to bend, they would’ve broken.’
‘If we want to go home, they send us home’
The Purple House is literally painted purple. It has offices, a kitchen, chairs for patients and regulars to sit, and a large yard area in which a chicken waddles around. Towards the back is a room with two dialysis chairs. In a smaller place across the yard, Teresa, the ‘bush medicine queen’, works her medicine magic, creating bush balms that are popular with the regulars.
‘It’s the only dialysis centre where people come in on their non-dialysis days to hang out with us,’ Sarah tells me as she takes me on a tour. There are a number of other people who work here: there’s Colin, a dialysis nurse who gets everyone ready for their trips home, out bush; and Jen, a care coordinator who does primary healthcare. They’re a welcoming, friendly bunch, who tell me I’m certainly going to see a different side to ageing and illness in Australia.
‘Can you smell that?’ Sarah asks, breathing deeply as we step inside the kitchen Teresa works from. It’s irmangka irmangka, or scented emu bush, which will go into a bush balm with beeswax and olive oil. ‘You can use it for everything,’ says Sarah. It’s made to provide relief for arthritis, muscle pain, joint inflammation and dry skin. You can also use it as a chest rub for cold and flu – it smells like a much nicer version of VapoRub.
Sarah tells Teresa why I’m here – to talk about ageing and illness in Indigenous communities. In her quiet voice Teresa quips, ‘We leave them, we dump them,’ before erupting into laughter. But then she gets more serious. ‘Sometimes we take them out, old people, and look after them on country.’
Teresa’s husband was on dialysis before he passed away. It was through him that she discovered the Purple House. ‘I was sad for a while,’ but, she tells me, he lived for a long time on dialysis – five years. ‘I was just counting yesterday. I was shocked that he lived five years. A lot of people only live two years or three years.’
Teresa and I talk while she brews a beeswax concoction. Making irmangka irmangka, she explains that it’s also for the skin. ‘And our grandmothers used to drink this; put it in, boil it up and drink it.’ She tries to teach me how to say it quickly, the proper way. I flub it and she laughs warmly, repeating it.
There are several products in the bush medicine range, all part of a social enterprise that grew out of the dialysis patients’ desire to have it on hand. ‘They had stories to tell about bush medicines that their grandmothers used to eat, and they and their mothers have used as remedies out bush, which they really wanted access to as an important part of their wellbeing.’
Patients would ask family to pick the herbs and send them into town on the bush bus. ‘These would come to the Purple House in a plastic bag, and they grind them up and make them into a bush medicine.’ Packaged into plastic takeaway containers, they would deliver them to the hospitals, hostels and town camps near Alice as a present to the other dialysis patients in town.
‘And then we realised there was a real danger – because people were off country – that the cultural knowledge about these plants would be lost. And there wouldn’t be opportunities for these older women – because this is women’s work – to pass on the cultural knowledge to their kids and their grandkids.’
Thus a social enterprise was born. The bush balm shop provides income for dialysis patients. It not only gives them something to do on their non-dialysis days, it is another way of telling the story about the Purple House, that they are not passive recipients of care, sitting and waiting for their blood to be cleaned. ‘These are people who are running our company, who are looking at ways to improve their own health and the health of their family, and are valuing the cultural knowledge that they own.’
The Catholic charity Caritas came on board about five years ago to help develop the social enterprise. Money raised goes back into more dialysis out bush. ‘Also, we’ve linked in with some Indigenous traineeships, so we have young Aboriginal mainly women coming [to the] Purple House, studying business and management. Working on their marketing.[Learning] how to run a business. And either [they] continue on to work at the Purple House or go on to do other things. So it’s a beautiful thing.’
The bush balms are sold on the organisation’s website, through Oxfam’s online store, in art gallery and museum gift shops, and at the Purple House. It pleases Teresa to see the products out in the world. ‘Especially [for] people on dialysis, they love it.’
Teresa, who has help running the business at the Purple House, still worries that younger generations will lose this knowledge. ‘We’ve learned a lot from our grandmothers. They were so special, in the old days. But it’s different, it’s different … no one’s interested.’
Teresa emphasises the importance of hunting in her culture, and passing on stories. ‘We’ve got our own fairy tales our grandmothers used to tell us at night-time. All those things gone. They’re disappearing.’ Bush medicine is an attempt to continue tradition and maintain knowledge. ‘We are the last ones, I reckon, to keep it alive.’
Over two mornings, I meet with some regulars at the Purple House. For some of them English is a fourth or fifth language. There’s Kaylene, a long-time renal patient who is readying herself for a brief return home to visit family. She’s missed a few dialysis treatments and has some catching up to do to get well enough to go home next week.
‘Are you going to Mount Liebig?’ she asks me.
Unfortunately not, I tell her.
Kaylene tells me that she comes to the Purple House for lunch, and occasionally she will do dialysis there. She’s been in Alice Springs for three years, but she likes the bush and talks briefly about hunting. It’s a huge story for her to be going home. They’re waiting for her at aged care, Raewyn tells me.
There’s Ivy, who’s
fifty-four. She speaks to me while her favourite gospel music plays in the background. The music is soothing, she says. From Wanarn Community across the border in Western Australia, about an hour-and-a half-flight south-west of Alice Springs, she’s waiting for dialysis in order to get home. She’s been in Alice Springs for around two years, since she got sick in 2015.
‘I’m feeling right, but this and this …’ She points to her legs – they’re weak. ‘But everything is okay.’
She likes the Purple House, and its people are friendly. ‘I’m happy to be here,’ she says with a grin. But she says her family gets lonely for her. ‘My family is waiting for me to go back.’
Ivy likes two- to three-week visits, then to return to Alice Springs.
‘Why are you writing this story?’ she suddenly asks me, her expression mildly amused.
I tell her and she goes on to talk about her brother, who used to get dialysis here, on his way to Darwin.
Ivy repeats that she’s content here – people get together, they’re friendly, and they talk. She’s made a lot of friends. ‘And they’re making me happy.’ She beams. She even has praise for the hostel she lives in. ‘We talk and laugh, make jokes and all that,’ she says.
Josephine, sixty-three, is another Purple House regular and a renal patient. The first time she went to Adelaide and Darwin, she was shocked. ‘Because I’m a desert woman, see; I’ve never been in cities.’ She doesn’t like them. ‘Too far. They make you homesick. People want to stay with family.’
She talks about the importance of family; of family looking after each other – only her teenage daughter looks after her. ‘I’m happy,’ she says. ‘My daughter’s close to me and I’m close to her.’
She comes here every week, and has been doing dialysis for many years. She says the staff are helpful. ‘And if we want to go home, they send us home.’ Like the others, she lives in a hostel in Alice Springs. She even gives me directions to it. But she gets homesick despite the ‘big mob’ at the Purple House. Her parents have passed away, and her brother and sister, an aunty; another aunty is very sick, a renal patient who will be passing away soon. Her cousin, also a renal patient, has passed. ‘They weren’t looking after her properly. She wasn’t looking after herself because she used to drink a lot, and not eating the right food, you know? Buying takeaway.’
I ask Josephine about her kidney issues – what led to them? She tells me she used to be a drinker. ‘Then I got sick. And diabetes.’ She felt a kind of pain in her body, like she was being punched. She demonstrates, touching her body. ‘I felt that.’
At hospital she discovered she had kidney problems. She can’t remember how old she was at the time. But she’s taking care of herself now. ‘Like taking pills. Eating proper food. Doing exercise. Walking around, you know?’
Josephine is a positive presence. She finishes by telling me about the things she likes: visiting family, visiting other places, painting, though it’s not a huge passion, she says.
Irene is a director of the Purple House. She offers community support. She speaks several dialects. She’s an advocate for her community. Raewyn tells me Irene is always the one who stands up and makes sure everyone understands what’s being talked about in a meeting. She’s smart, and likes people to listen carefully – ‘because it’s a big story, this one’.
Before we chat, Raewyn plays us a video of Carers Week at Mount Liebig, when the women were treated to a day of pampering (they dyed their hair), and hunting. Irene watches approvingly but she’s not expressive. She has a commanding presence. We speak while in the background everyone goes about their day: staffers making cheese sandwiches for patrons; slicing up fruit, which gets covered by a net to keep away the flies; chatter and friendly banter. The Purple House is very much about social interaction. Both mornings I am there, I observe the camaraderie between staff and regulars. Irene talks about this, how she likes seeing doctors at the Purple House; to see the workers there; to meet families when they come in.
Originally from Papunya, Irene joined the new community of Kintore in the 1980s, establishing a school in 1981. Now she’s at the Purple House.
She vividly recalls when she got sick, she thinks in her forties (she’s now fifty-eight). ‘I feel my body’s getting weak. I can’t walk. Didn’t know what was happening, you know.’ She didn’t realise that fluid was building up in her legs. ‘The doctor said, “You have too much fluid, you maybe need renal, you know, dialysing on the renal.”’
She tells me with a smile that she didn’t believe the doctor. It was only when she grew very ill that she took him at his word. ‘My friend told me – he was crying – that I should have had this done before.’
So she went to Alice Springs to receive dialysis. It was difficult – it took her away from her community and her home. ‘It’s important for me because they started missing me. Not only one person. Even the little kids – grandchildren, nieces, nephews.’
She missed them, too. ‘Not only a few. I’ve got family all over.’
Irene reflects on how there used to be more respect for older people. ‘Not now, today. Today people just want to take money from old people.’
There’s silence for a moment before suddenly Irene declares, ‘My story’s finished.’ She has work to do, after all.
Friday
It’s a Friday in December, but I’m not with my folks. I’m in Brisbane with my husband, Chris, visiting his family over the Christmas break. I call Mum and Dad, of course; check in, hear about their day, which my mother can timetable for me with precision – down to who ate what, with a rating for service and ambience thrown in for good measure. I will be back in time for New Year’s, to see off the year with my family as fireworks light up the night sky.
For now I’m with Chris’s family, negotiating the Brisbane summer heat and catch-ups with his relatives and our friends.
Chris’s grandmother, Hazel, is impressively independent for someone in her nineties, and my in-laws, Ross and Judy, are solicitous with her. She lives on her own, still plays piano at concert recitals, keeps up with her favourite television shows and authors. Chris’s parents ensure her fridge is always fully stocked – Hazel calls it ‘Aladdin’s cave’, a plentiful treasure trove of her favourite foods and delights.
My in-laws are affable, kind and considerate people. They allow me to turn their dining table into a makeshift office whenever I come to visit and need to write. And I love to hear their stories.
This time, knee-deep in ageing and illness, I’m reflective. For months my world has been filled with other people’s lives of loss; their memories; photos of former selves who seem distant and almost idealised. I recognise how privileged some of us are to have the capacity and circumstances to curate a good life, one of meaning and purpose. One that is generally safe and expansive. One in which many of us take our health for granted in our younger years.
‘I’ve never seen pictures of you when you were young,’ I say to Judy and Ross over dinner. There’s a scattering of framed photos around the house, but none of the sepia-toned or black-and-white ones I always find so fascinating. I’m suddenly curious to have a glimpse of them as they were when they first met, of Ross as a cadet engineer on a ship. He speaks fondly of his days at sea – pre-containerisation. ‘Got out just in time,’ he says. He has strong memories of what it was like to live on board: the rules, official and unofficial; the camaraderie between men, and how they were like family (nobody could come between them). I hear about how when the couple were newlyweds Judy joined Ross for a trip to England. Judy loved it, had no issue being on board, and was afforded respect from the men.
Later Judy finds me at the dining table working on the book. ‘Come here, I’ll show you those photos,’ she says, with a smile. She retrieves a box and a carefully preserved album wrapped in tissue paper – the past enshrined. It’s odd seeing these pictures; they have the same effect on me as those of my parents when they were young and their future brimmed with potential. Why do they move
me so? Is it because the images are romantic? Is it their beauty or the hint of idealism? The idea that then life was idyllic?
On their wedding day Ross and Judy beam at the camera, youthful and happy. Judy is all class, her hair beautifully coiffed; Ross, a tall man, towers above Judy. He has a full head of hair and his recognisable cheeky grin. He joins us as we excavate the past, chuckling at some of the photos, he and Judy talking about various people in them – who they were to them then, where they are now.
It’s lovely to see how easily they dive into their histories. The beauty of youth. The intoxicating sense of possibility. In the same way photos of my parents affect me, I’m warmed by the history that these photos contain. The way they commemorate and speak to you all at once, a tangible reminder of the different parts of you. An honouring, and a way not to forget all that has been as you look ahead.
10.
GETTING TO KNOW MY PARENTS
You don’t learn in good times. It’s difficulty that clears your sight.
It seems appropriate that my explorations of ageing come to a soft landing in Alice Springs. By this point something in me has been transmuted from shock to acceptance. I ponder this as I sit at the desk in my hotel room, hunched over my computer screen, waiting for that conversation with Minister Ken Wyatt. How to talk to a politician after hearing so many real experiences, surrounded by notebooks filled with these disparate and extraordinary stories to piece together.
I think of the many ageing women who recounted years of physical troubles and the stress of managing children, parents and their own wellbeing. I am reminded of the carers I met who are grappling with their own stories, trying to make things right with themselves in order to take on their new responsibility to parents. My thoughts move to Stephanie, one of the most striking interviewees, a woman in her forties who’s put her life on hold while she deals with two ageing, sick parents. Her mother has a vital, able mind, but a body reliant on oxygen 24/7. Stuck. Knowing, seeing and loving as always, but imprisoned in a body that has lost its agility. She is barely living, but Stephanie can’t bear the thought of her physically dying. ‘I will be devastated,’ she told me. ‘She’s my soul mate.’ Her father has suffered a terrible degradation of mind, his memories lost, preserved only in photos. A day out to the theatre can bring up moments of joy and communion for him, but these moments disappear within hours.
