A Doctor's Dream

by Buddhi Lokuge

  Everyone at the table worked in health care. We were all there because of a drive to help, but each one of us was struggling to match the systems with the reality. Despite the hard work of hundreds of dedicated, well-trained health workers every year there were more occurrences of diabetes, heart disease and infections and more smoking, obesity and lack of exercise.

  And so most balandas left after a while. Those who came for the mining money left once their marriage broke down or they had paid off their house, and those who came to help left when they discovered that they risked losing something they had never realised was precious: their own sense of hope. Once in a while a rare soul would find their home among the Yolngu and thrive there but most worked until they had burned out or their families had left them, and then they went home.

  One of the doctors at the lunch took me aside to speak about a Yolngu man in his mid-twenties who had died of a heart attack the day before in Gurrumu. He had never had a single health check in his whole life so nobody knew what his risk factors were but they learned afterwards that he had not had congenital heart issues. Their best guess was that two of the main contributing factors were undiagnosed diabetes and smoking.

  ‘It’s so futile I feel a bit sick,’ I announced over the noise of the Troopy as we drove home in the evening. It seemed that every time I was at risk of falling in love with this place I would be reminded of the harsh realities. The children had fallen asleep in the back of the car and Tanya looked across at me in surprise.

  ‘We may have done some good turning the program onto individualised crusted scabies work and away from mass drug administrations but nothing’s going to change, is it? I still can’t see a reason for us to be here. For any of us. For any of this.’ I swept my hand in front of me. The mining activity had come right through here, though we couldn’t see much of the land beyond the red-dirt mounds, covered with saplings and sparse new growth that lined the road.

  Tanya turned her head slightly, her eyes still on the road. She wasn’t sure where this was going. I had told her to pack up and be ready to leave in mid-February, then a few weeks later I changed my mind, as she had assumed I would. Was I about to announce another departure date?

  23

  CEREMONIAL LIFE

  At Yalambra a major men’s business ceremony had been underway for several months in a nearby sacred area, off limits to all but a few select Yolngu men. As I started to spend more time in the community with families, I got to see a richness of family life in a way that I hadn’t experienced anywhere else. I enjoyed visiting Yalambra because it was too far from Nhulunbuy for taxi trips so there was a strong sense of the elders being able to hold onto culture and traditions.

  On my frequent visits to Yalambra since moving up to east Arnhem seven months ago I had started to notice a change and over the past two months the dusty street had started to buzz as people prepared for the return of their young men from men’s business. Seventy young men had spent nearly nine months living in a sacred place out bush, learning traditional laws, songlines, discipline and the ways of being a man. The boys had had their initiation ceremonies earlier; this was about men’s business. It was a remarkable feat to get teenagers, most with smartphones and Facebook pages, to abandon all their connections with their world and live off their own resources for nine months under the tutelage of elders.

  As the only male doctor in town at the time of my visits, I was asked to treat some of the young men when they needed medical attention. I was driven part of the way in by a young yolngu man, Bobby Bramer. He left me and entered the sacred men’s area where the men were staying. He then emerged with six lanky adolescents, all sporting beards, loincloths and a covering of dust and soot. A life of hunting, without access to junk food, had made them lean and strong.

  One man had developed a nasty infection that did not respond to the bush remedies. Because he was from the Dua line he was not allowed to leave the sacred area to get treatment. Outsiders were forbidden by law to enter the sacred area and there was also a law against the mixing of sexes so, while medicines could be taken in, the female doctor who usually worked at the clinic could not see the patient or administer the medication. She was used to working around local laws and, when I wasn’t there, would send Bobby to get a clear description of the problem. Then she would send medicines and injections back to the sacred area with Bobby, who worked at the clinic. It was that or nothing.

  When a young man of the Irritja moiety got sick, different laws applied and he was allowed to leave and go to the clinic for treatment, but first the town had to be shut down to prevent accidental encounters with females and I had to treat him in a secluded area.

  So after nine months of isolation, the young men were finally ready to re-enter the community. Excitement built during the month leading up to the full moon, which would mark the day the boys would emerge from the sacred area.

  The Yalambra clinic looked out onto a three-bedroom house with a lovely, grand tree casting shade over it. An old woman lived there with two of her children and their families and over the weeks the household grew. First an old 4WD appeared and by evening a tent had gone up to house family members from Elcho Island. A few days later a Ford Falcon appeared, with salvaged parts and a motorbike wheel on the front, miraculously making the 300-kilometre drive from Maningrida: another family and another tent.

  By the end of the month fifty or more people were sharing the house and the tents in the yard. Young children ran about, playing with the seven dogs that also inhabited the house. One warm day a canvas slide appeared that was hosed down and the kids took turns to slide. That one house had the atmosphere of a festival and the same thing was happening in every Yolngu house in Yalambra.

  The teens of the house all had smartphones dangling from earphones. The girls mingled, laughing at a picture on a phone, copying dance moves from YouTube and giggling. The teenage boys who had not been part of the men’s business sullenly kicked a ball. And the parents busied themselves preparing food, talking and planning for the days ahead.

  The old matriarch of the house sat at the centre of a woven mat and pulled strands off paperbark branches. She pounded the strands with a stone to make rope and unhurriedly wove the rope into ceremonial skirts.

  One evening all the girls got together in a circle and started to sway to music. It sounded traditional but then I heard the unmistakable chanting of Amen. They sang and practised a dance that they would do at the ceremony.

  Brangi was a collection of five or six houses that transformed into a tent city over the month. This was where the young men would emerge from the bush. Family groups would arrange four or five tents in a circle and cook in the centre, with mats laid out so that the elderly could lie down. A few extra outdoor toilets had been built and someone had knocked up a thatched pergola of sorts to house a few tables and a sink for washing and cleaning.

  The logistics this migration required were astonishing. Endless negotiations, for months prior, as well as the obligations drawn from family position, would have dictated who did what and no doubt there were mishaps and friction but from the outside it looked seamless and effortless.

  People arrived from far-flung cities, neighbouring islands and homelands by boat, car and plane and it was clear that nothing would get in the way of this time of ceremony. The town and surroundings of Yalambra tripled in population and all the Yolngu staff of the clinic, the shire, the school and the shop went on leave. If leave was not granted, they came for sick certificates. If these were not accepted they simply resigned. The town was run by a skeleton staff of balanda.

  I noticed that even the most unromantic balandas in Yalambra who normally had no time for ‘cultural stuff ’ were getting caught up in the growing excitement. Those who had been adopted by local families and were invited along gladly accepted.

  On the full moon the young men were spat out of a serpent’s mouth and emerged from the bush covered in blood and dust. More than a thousand of their extended family were
there to witness their triumph. Parents, aunts, uncles, grandparents, cousins, siblings, promised wives; everyone the young men had ever known was waiting for them.

  The women started chanting slowly and as the men appeared, spears in hand, they circled the ceremonial area stamping their feet and engulfing us all in a small dust storm.

  A balanda sense of duty may have been keeping the clinic and shire open, but had these people been my grandfather’s cousins and their kids; my brother and his family who had moved away; a cousin I had a crush on who was now married and living elsewhere, who had returned with her children but still evoked fond memories . . . nothing would have been important enough that I couldn’t take some time off to spend at this grand reunion.

  24

  RUKULA’S SURPRISE

  I had picked up more and more patients with crusted scabies so once Eva and Rukula were established I left them to continue the program on their own. But in February Eva let me know that she had not been able to reach Rukula. Each time I tried to call her she would not answer or was busy. I groaned inwardly. She had probably relapsed again and was avoiding contact with the clinic for fear of being sent to hospital.

  Finally, Eva and I decided to go to her house after hours to see her.

  The whole family was sitting outside on the verandah. The women were busy preparing the evening meal on a fire outside. Rukula’s tent was nowhere to be seen and a young boy came bounding out to see me.

  Radiant, he shouted, ‘Hello, Doctor Buddhi!’

  It took me a while to recognise this bundle of energy with the cheeky smile and shiny skin as Yinarri. The same Yinarri I had last seen thin, covered head to toe with sores, itching continuously and hiding in the corner with a haunted look.

  Then Rukula came outside, reached out and squeezed my arm, and apologised for missing my calls. She had been busy back at the healing centre, she said, and was working long hours. She had been asked to prepare a presentation about traditional medicine for a group of visiting academics. She wore a simple, sleeveless dress and glowed with health.

  Finally her husband, Butjarri, stepped outside, wearing only shorts. His dull skin had hosted a continuous cover of oozing sores and scabs, but today his chest looked like burnished ebony. He and Rukula laughed at my expression.

  ‘Don’t worry, Doctor, I’ll be keeping an eye on him!’ Rukula joked.

  And then she grew serious.

  ‘Remember what I asked you?’ she said. ‘I want to make sure no other family has to go through what ours did. Now I know this scabies was not our fault. You tell the other doctors not to blame us for this. Tell them to treat people like you did, in their own home, with respect. That’s how to deal with crusted scabies.’

  The strength I had seen in Rukula the first day we met, when she told me she would not go to hospital, came out in her quiet confidence now.

  I faced her. ‘Why don’t you tell them yourself? You could speak at conferences, go to see the Minister of Health, or maybe even the Prime Minister, and make it a national priority . . .’

  Then I pulled out my mobile phone, switched it to video mode and gave it to Eva.

  ‘What would you like to say?’

  Without blinking, Rukula made an eloquent and powerful appeal. Yinarri sidled up and wrapped himself in Rukula’s arms, gazing up at her as she spoke. Rukula stroked her grandchild’s arms and told the camera that Yinarri was back at school, every day. And it was all because she, Yinarri’s grandmother, had been treated.

  She thanked us for listening to her and for believing in her, and for treating her in a way that made her feel comfortable. And as I watched her I saw the next decade of the One Disease scabies control plan unfold before me.

  ‘Edit this!’ I said to Tanya as I threw open the front door and handed her my phone that evening.

  Tanya raised her eyebrows.

  ‘This is it, Tan. This is it! We will make Rukula’s voice count!’

  I started telling her how no magic-bullet approach would have worked for Rukula and how scabies treatments were designed for urban settings, not endemic conditions but Tanya wasn’t listening. She had already uploaded the files and was frowning—most of the videos had been recorded with the phone on its side and the sound quality was terrible.

  It only took her a few minutes to rotate the footage but that left the pictures stretched and odd-looking and she could hardly make out what Rukula was saying. This was going to be a challenge.

  I watched her logging the footage so she could put together a storyboard. This was where charity can make a real difference, I thought. In some ways all the time spent on the ground trying to help is only useful if it gives voice to the invisible. Without that, without a true partnership in developing solutions, without advocating for change at the systemic level, charity will fail. It will most likely fail at its own objectives but even more importantly it will fail because it further disempowers those it was designed to serve.

  Case studies, advocacy campaigns and policy changes must all be aimed at creating systems that better support people to help themselves. Changing our approach to scabies from a parasite problem to a human problem involving families and real people, allowed us to find real-world solutions.

  After many months working intensively with the most infectious scabies patients I had not once picked up the mite myself. Our understanding of the parasite under these conditions was limited.

  In the five months since we had first seen Rukula and Yinarri, Rukula had not once relapsed and her family had not been to the clinic for scabies. In the first ten years of his life Yinarri had attended the clinic for scabies and related issues once every few weeks. This was the first time in his life his body had been free of the mite for so long. I had promised myself that Yinarri would be my yardstick and by that measure our program was succeeding. And we were seeing similar success stories to Rukula’s in the other families we had been working with.

  I was fairly sure we had found a program that worked now, managing crusted scabies as a chronic condition, and my focus was already shifting to the next problem. How could I set up a system around this program that would support the patients for the long term? Even a perfect program would fail without the right support built into and around it.

  Now I could see a reason for the program to stay, but it no longer needed a public health doctor with a Harvard degree. It needed to scale up. Health centres in every community across the country needed to learn how to reduce their workloads and prevent needless suffering through chronic-care management of crusted scabies.

  ‘Can you take the kids to the pool and pick up some dinner?’ Tanya asked absently. She would not rest until she had edited together something she was happy with.

  I grinned and left her to it. We made a good team.

  Part 3

  MAKING EVERY VOICE COUNT

  25

  BETTER THAN A THOUSAND COMMERCIALS

  Just as we hoped, as life in the worst affected households improved, the obvious changes in these families began to do the most effective social marketing possible: word of mouth.

  After putting the kids to bed each night, Tanya stayed up editing Rukula’s video. She turned down my voice when it was right by the camera and lifted Rukula’s voice; took out what she could of the background noise; snipped out the shuffling, pauses and repetition; and shaped it into a story. There, in front of our eyes, was the heart-felt plea of a grandmother.

  ‘I want to say “thank you” to you, Buddhi and Eva, for listening to me,’ Rukula said.

  When I watched the finished product I just shook my head silently.

  ‘This is all we need, Tan.’

  I copied it onto my laptop and drove to Yalambra to show Rukula.

  A tear rolled down her cheek as she watched, and she said again that she wanted everyone to hear her story and gave me permission to use it wherever it was needed to help other families. So I copied the video onto a USB stick and shoved it deep into my pocket, taking it with me everywher
e I went.

  From that day on, whenever I had to explain our work I simply pulled out the USB stick and had my audience sit still for seven minutes. By the end of the story they got it. Rukula’s story began to work its magic.

  Now it wasn’t me explaining anymore; it was Rukula. And hers was a powerful voice. One by one, people from the communities all across east Arnhem began to ask us for help.

  One senior member of a family in Yalambra stricken by continuous scabies contacted me because of Tyson, a young man living with crusted scabies under her roof. Her family had been subjected to repeated treatments, insecticide bombings and hospitalisations, in accordance with treatment guidelines, but nothing worked for long. Eventually the household gave up and after enough passive resistance they were largely left alone. Whenever clinic staff came to follow up a young child who had been recurrently sick, the family would silently move outside, sit down and get on with painting or talking to each other. Without engagement there was no chance to sun bedding and nobody expected the tubes of cream would even be opened.

  After his family member reached out to me, I would drop in and see Tyson regularly on my visits to Yalambra. I tried to find common ground with Tyson but it seemed our worlds were just too different. Despite being barely out of his teens he had endured years of suffering, bullying and ostracism as a result of his skin condition. Clinic staff hit a wall when they tried to engage him.

  The clinical notes were full of descriptions such as ‘non-compliant, behavioural issues and oppositional’. Tyson would not look at me and would barely grunt when I asked a direct question.