A Doctor's Dream

by Buddhi Lokuge

  The team had decided to include Barraka since it was nearby and people moved fluidly between the communities; they may as well clear out the whole area in one go. The following week our education campaign wound through the few streets of Gunyangara over three days. The team agreed to leave Barraka until after the weekend and the actual healthy skin day would take place one week later.

  •

  Monday began like a slap in the face. We gathered at Gunyangara and drove out to Barraka in high spirits but we had all overlooked one important thing: we had not been invited to Barraka.

  One old balanda local barked at us from his door, ‘There’s no scabies here.’ And closed it in our faces.

  I had already seen a number of children with active scabies but it was clear that we were not welcome. When I returned home that evening I dropped into one of the chairs and breathed out heavily.

  ‘Why did you decide to include Barraka if nobody invited you?’ Tanya asked.

  ‘I didn’t. Everyone at that first meeting wanted to include both communities. It makes sense—it will slow down the return of scabies. There was only one elder representing Barraka, Thelma, and she agreed but she’s busy and didn’t have much to do with the lead-up. She’s not there now; she has an art exhibition in Japan.’

  ‘Well . . . either it will go well or it will prove the importance of being invited in, I guess,’ Tanya said, trying to sound upbeat.

  I just grunted, drawing a deep breath and letting it out in a big sigh. ‘Oh, by the way, Sam is coming up to visit the day after the healthy skin week finishes at Gunyangara.’

  ‘Oh, he’ll miss the action!’

  ‘He’ll get to meet more people this way. It will be good for him to see just what he has taken on and make clear that at some point I will be handing over the operations.’

  21

  GUNYANGARA SKIN DAY

  The pressure to develop precise timelines was building as One Disease attracted more support and funding. In the field it finally felt as though things were beginning to take shape but, while Sam shielded us from most external pressures, it was clear funders wanted to see specific goals, timetables and measurables.

  I was building a reputation for being genuinely open to consultation and as a result I was starting to enjoy support from communities, clinics and other avenues as well. I knew that the moment I sat down to a meeting with a plan full of goals, timetables and measurables in my hands, all my patients, community leaders, health workers and clinic managers would know they had fallen for empty talk of consultation and walk away from our program.

  So the Gunyangara healthy skin week felt like my way out of the dilemma. If it worked it would buy the program some credibility and me some time to continue working respectfully with my crusted scabies patients. If it didn’t . . . I knew better than to place all my hopes in one basket but the big scabies treatment day at the end of all the education just had to go well.

  When the day dawned I was up and dressed before the children woke up. I got a lift out to Gunyangara and what I saw there stopped me in my tracks. People were already outside putting their mattresses in the sun and hanging out their washed sheets. Valerie was on the loudspeaker explaining the importance of everybody joining in so no reservoirs of scabies were left. As I made my way around the households of Gunyangara with the team it was a smooth process of handing over the Lyclear, giving a quick explanation, supporting mothers to apply creams then and there, answering any questions and moving on. It was a welcome community service, no coercion required.

  When we moved on to Barraka the few people who bothered to turn out for the day were not very engaged and I doubted they would even bother opening the tubes of Lyclear.

  Once we had finished for the day I tossed the keys to the clinic’s Troopy to Gerome, a young community worker who was dropping some of the helpers home. One of the nurses gave me a lift to the barbecue we had organised to thank everyone involved in running the day, and half an hour later Gerome turned up with a car packed full of young men.

  More and more people appeared; Tanya turned up with litres of juice and bags of ice and the mine’s catering company arrived with enough food to feed a small army as their contribution to the day. Our children sat on a mat with some women from Gunyangara, waiting for the speeches to finish so they could start eating.

  One of the team gave a speech thanking the Northern School of Medical Research (NSMR). My shoulders dropped. The Sydney team hadn’t had time to organise T-shirts so we could start branding the program as a One Disease effort. I glanced at Tanya to see if she had noticed. She was holding a two-week-old baby, staring hard at his chest. The baby was limp and horribly still. Suddenly he yawned and Tanya looked up, the blood returning to her cheeks, and pulled a face at me. I laughed, forgot about the T-shirts and focused on enjoying the success of the Gunyangara healthy skin week.

  Sam wasn’t able to come to Nhulunbuy as planned because he was named the Australian Capital Territory Young Australian of the Year.

  •

  Six weeks later when we did the follow-up screenings in Gunyangara, it showed that scabies rates had halved after the healthy skin day and that the remaining scabies was once again clustered into just a few households.

  The steering committee wanted numbers. So I gave them the numbers we had. Barraka had a much higher baseline rate and my sister, Kamalini, the epidemiologist, told me that even though our screening had been done with at least as much rigour as any of the previous screenings, with such small numbers we really needed to screen every single child for statistical accuracy. Nevertheless the results looked impressive. It was just what the program needed to keep the donors happy.

  More importantly, the community members of Gunyangara had been fully engaged and were satisfied with the process. The screening results were a well-deserved pat on the back but one they didn’t need, since they were already enjoying the results of the healthy skin week in scabies-free households.

  It was mid-December and the weather was becoming sticky and oppressive in the build-up to the wet season. Things were slowing down as people went on leave, so after four months living in Nhulunbuy Tanya and I started working on the long list of non-clinical things we had intended to do.

  It had turned out to be difficult to track down a reliable supply of mechanical washing machines. Even Westinghouse, the company that had made the washing machines Bruce swore by, now hid electronics behind their simple-looking exterior.

  I had rewritten the scabies treatment protocol for inclusion in the next Central Australian Rural Practitioners Association clinical guidelines. My new protocol completed the first review stage in December, and included ivermectin for the treatment of simple scabies cases, which meant clinics would finally, officially, have more options to use in difficult situations.

  Sometimes I felt that all I did was talk and lately it seemed that Tanya had stopped talking altogether. She would listen silently, apparently deep in thought, while I talked to her for hours. I’d talk to Oliver, then I would speak on the phone to Sam for as long as Sam had available, and then doctor Kathy—the dedicated Aboriginal Resource Development Service doctor—would join me for a round of discussions. I would go out and chat to Bruce or Oscar, stop by the clinic and spend time with the nurses, clinic manager, health workers and patients and when I got home I just kept talking.

  Instead of travelling we enjoyed a quiet Christmas season in Nhulunbuy, which was even more relaxed with so many people away. We spent more time in the communities, out at the Latrim River or bike riding with the kids. Once we tried camping but it had rained for the first time that year just the day before and the mosquitoes and sandflies swarmed so thick around us that no amount of repellent or clothing seemed to deter them. In the end we gave up and returned home, grateful for our little airconditioned park cabin with screens on every window and door, and for the antihistamine that stopped our children scratching themselves raw.

  It was almost Christmas Day when Lawrence email
ed to say he too would be leaving NSMR.

  ‘Imagine if someone had told you six months ago, “Hey, don’t worry about what these guys say—they’ll both be gone in six months”,’ Tanya said.

  I just shook my head.

  Something changed for me with Lawrence’s announcement. This was, after all, just a job. It wasn’t worth dying for.

  ‘Fifteenth of February, Tan.’

  She looked at me quizzically.

  ‘Book our tickets, we’re leaving on the fifteenth of February. That will be one month after Oliver starts as operations manager. A one-month handover. I’ll let the team know.’

  ‘Okay.’ Tanya felt a quiet buzz of excitement. It had been just over a year since Sam came to our back yard in Canberra and spent the evening talking scabies. Where would we go next? But she didn’t book the tickets.

  •

  It wasn’t long before Lawrence announced his intention to step down from the steering committee. This time I accepted his decision readily. Annie had finished the second mass dosing in Galiwin’ku and she told me that the rate of scabies on Elcho Island had remained at around 9 per cent at the twelve-month mark. The effect on strongyloides had been significant, however.

  ‘I’d like to make a short video,’ Tanya announced suddenly, one afternoon. ‘To show the Sydney team what it is like in the field and—’

  ‘Sam has been up here.’

  ‘I know, but they’ve never met Oliver and he’ll be starting as the new operations manager in a few days. Or Raminy, out in Yalambra. I thought I could introduce the staff and the field to them through a video.’

  Raminy was an elder who had worked with healthy skin programs previously and was our first local hire. Yalambra would be hers to manage and we would help her as she saw fit. She would keep an eye on the skin situation, guide young mothers to attend the clinic when their babies had the tell-tale sores, quietly mentioning the options available to her neighbours and friends where necessary, without drawing attention to it. If it worked well, there shouldn’t be a need for us to be involved. We wanted to denormalise scabies, not sensationalise it.

  ‘I don’t think Oliver would like to be in a video,’ I grumbled.

  ‘Well, I’ll ask—if he doesn’t want to he doesn’t have to.’

  ‘Raminy won’t feel comfortable either. She’ll feel like some kind of zoo animal. I don’t think it is a good idea at all.’

  Tanya breathed out. ‘Are you sure? I can see it exactly—short clips that people can watch from anywhere, talking to Oliver about his experience and partnering with community, leading from behind as he likes to say, and Raminy could describe how she—’

  Holding up my hands, I agreed.

  22

  RAMINY TALKS

  Oliver began work before his official start date, so by the end of January 2012 he had settled in and taken over some of the day-today work, freeing me to focus on the crusted scabies patients.

  I began to really enjoy the work for the first time since we arrived. But I feared that the same pressure to produce reportable results would be placed on Oliver so I quarantined him from the steering committee. For the first six weeks of his tenure I called the Sydney office daily and reminded them that their most important job was to support Oliver.

  In the meantime Tanya interviewed Oliver, who was a natural on camera. Editing on her old laptop was a challenge but she stayed up late each night to complete it and, despite the low sound quality, Oliver came across as a highly competent addition to the team.

  The interview with Raminy was not so smooth.

  At first Raminy didn’t show up, then she asked Tanya to come to her house. When Tanya and Oliver arrived, Raminy was still asleep. Tanya asked if they should come back later but a young girl ran inside and shouted for Raminy, who jumped into the shower, threw on a One Disease T-shirt and walked silently to a small beach-side shelter with Tanya and Oliver. The scene was gorgeous but Tanya knew that all she would hear was the ocean so she took some location shots and drove Raminy and Oliver back to the Miwatj office, thinking that maybe I had been right after all. The three of them slumped into the plastic chairs in the Miwatj tearoom and waited for the kettle to boil. Oliver and Raminy were matching in their striking new One Disease T-shirts.

  When a locum doctor walked into the cramped room he read the T-shirts and asked about One Disease. Oliver explained that the team was trying to develop a way to better manage scabies and the doctor, an older man, nodded. He had worked in Darwin and travelled to a number of communities. He knew about scabies. He wanted to know what the team was planning to do about it.

  ‘At the moment crusted scabies is not being managed properly,’ Oliver said. ‘We treat it like an acute illness and then return patients to an endemic area and they pick it up again almost immediately. So that’s one thing we want to focus on.’

  ‘Crusted scabies?’ the locum doctor repeated. ‘Is that a different strain?’

  ‘No, it’s the same mite but in a few cases patients react differently to it.’

  ‘Crusted scabies. I’ve never heard of it and I’ve been working in this area for over twenty years.’

  ‘It used to be called Norwegian scabies,’ Tanya volunteered.

  The doctor frowned. ‘That rings a bell.’ He looked thoughtful. ‘You lot aren’t connected with Buddhi, are you?’ When they all nodded, the doctor broke into a grin. ‘It’s very important work you lot are doing. Best of luck to you!’ he said as he left the tearoom with his coffee.

  The three of them took their tea into the Miwatj conference room and sat at the big table. While she set up the small camera, Tanya spoke to Raminy. ‘I’d like to talk a bit about how things are going and what you think best practice would look like for people partnering with your community. Nothing formal, just to introduce you to the team.’

  Raminy nodded solemnly. She gave a couple of one-word answers to Tanya’s questions and then turned to Oliver to ask what her job title was. Tanya felt herself growing hot. She tried some more open-ended questions and waited sometimes for several minutes for Raminy to think through what she wanted to say and then begin to answer.

  Tanya steeled herself, remembering the magic of editing, and continued to wait out the uncomfortable silences and slowly Raminy relaxed and began to give thoughtful, meandering answers.

  ‘The main difference between Yolngu and balanda is family. In balanda culture family is . . . intimate.’ Raminy brought her hands together like she was cradling a small animal. ‘It’s . . . you know . . . mother, father, children . . . intimate. In Yolngu culture . . .’ Now she waved her hands in a wide circle. ‘It goes around.’

  Tanya had a vague understanding of the way a Yolngu child could also represent a grandmother in certain relationships. There was a cyclical pattern to the kinship system that meant you were accountable not only to the elders but also to those younger than you and some of your peers as well. It made sense that those who were to inherit the future had a say in how it would be managed, Tanya thought, but even Raminy with all her fluency and practice in the ngapaki world had few words to express the complexities of the kinship system in English.

  Oliver remained almost silent throughout the interview. When he spoke it was to say that the cultural, social and linguistic knowledge that someone like Raminy brought to the program should be considered like a university degree. Even after many years living here, he said, he still didn’t have that level of understanding of how the family system works and he didn’t think he ever would, which was why it was so important to have someone like Raminy working on the program. ‘The One Disease program, or any program out here, will succeed or fail almost on that alone.’

  They were all silent for a moment. Then Raminy said that the secret was just time. Balandas just had to spend more time with Yolngu families. That’s how they would understand better and become fluent. It seemed to Tanya that Raminy was not just talking about language, but fluency in a different way of looking at the world. And Oliver, w
ho had learned Yolngu Matha, shook his head and snorted, ‘Not me!’ When Raminy threw her head back and let loose one of her expansive laughs, Tanya knew that she would be able to cut together something worthwhile.

  For almost a year I had felt like mine was the only voice repeating the mantra of true partnership and community empowerment rather than top-down ‘management’. Late one night I leaned forward and watched the videos Tanya had cut together on her tiny screen.

  The simple interviews wove a powerful story and I realised we could show that other voices, from people who really understood the situation, were saying the same thing as us. I wasn’t a lone nut; I was speaking the words of a group of people who had long had their voices drowned out.

  •

  The ocean sparkled under a cloudless sky. Tanya was driving, our children were in the back of the Troopy and after another busy week we were on our way to spend the day with friends in one of the most beautiful and remote places in the world. Soon after arriving we found that some of the other guests at the lunch were at the other end of their love affair with east Arnhem.

  ‘The problem is the idea that we’re here to provide good health, not help people earn good health. Who wouldn’t prefer to have their doctor or nurse come and pick them up for each appointment?’ one of the doctors said.

  ‘But nobody thinks to pick us up from the airport so we have to lug all our equipment in the dust and heat whenever we visit,’ complained another.

  One of the nurses groaned. ‘I was trying to help this patient find a way to remember to come in for his fortnightly treatment and I’m trying to do all the right things—considering the context, being relevant, finding appropriate motivations, blah blah blah, and he finally gets really annoyed with me and points at the other nurse and goes: “He knows. He can do it!” He just thought I was too lazy and incompetent to do my job, which was to remember to go get him for his fortnightly treatment!’