Tanya sat quietly on a plastic outdoor chair, one of the only pieces of furniture in our house. Calling my sister had been all she could think of doing. Her stomach churned as she watched me struggle through every single day.
Remote and FIFO (fly-in, fly-out) work often takes a toll on mental health and the rates of burn-out, depression, alcohol abuse and relationship breakdown are higher in these workers than in the general population. There was no doubt the six months leading up to our move to Nhulunbuy had been a major stressor on all of our lives but neither Tanya nor I had taken it very seriously. We always threw ourselves into each new project and just absorbed whatever emotional fall-out resulted and got on with things.
But this time it was different. I wasn’t bouncing back; I was sinking. I had taken on too many intense challenges in too short a time without enough recharging in between and now I was swamped by doubts. What was wearing me down more than anything was the feeling that we shouldn’t be here. I felt a clock ticking. If I could not find something of value for the Yolngu soon, I had to call off the show despite the high level of momentum and expectations, and pack up and leave.
I relied on Tanya to make sense of things and to listen to my neverending rumination. But I was losing my fight, my joy and my motivation.
Most days Tanya would simply accept whatever mood I was in. If I wanted to quit, she was ready to pack up and leave. If I wanted to stay, she was ready to settle in. But just before the steering committee meeting—after I had announced, once again, that I would quit—she had told me that I was almost through the hardest part of this journey now. She said if I could just hold on for a little longer, the experience of making it through the darkest night would change my life, and through my work on scabies, the lives of countless others.
Some part of me sensed that Tanya was right and I held onto her words. But I wasn’t sure it would be my choice. I didn’t feel far from breaking.
When Kamalini spoke to me on the morning of the steering committee meeting she was urgent and convincing, reminding me that this whole program was only about helping the children and empowering the communities. They were the only bosses I needed to worry about. No matter what the NSMR team said in the steering committee meeting I should simply say: ‘That’s fantastic. My job is to first do no harm and then empower communities and that is what I will do.’ She repeated herself over and over, rehearsing me through my dull, nauseating sense of foreboding.
Something must have stuck because although Lawrence and Graham kept hammering away at me for a project plan, I ended the meeting feeling no more shaky than when it began.
When I recounted the details for Tanya she resolved to write the project plan they wanted. I agreed, asked numbly what the kids would like to do that afternoon and then promptly went to lie down. Tanya set up the kids with a special picnic on the trampoline, sat down, pulled together all the information we had so far and wrote a project plan, beginning to end.
Sometimes bureaucrats and charities in distant cities just need a report or a plan to be reassured. So Tanya filled in timelines and duty statements, created deadlines, wrote out goals and key performance indicators and described each step of the way, each member of the team and when they should be hired and what characteristics should be sought when hiring the program team.
It was a comprehensive, well-designed plan for a scabies elimination program in east Arnhem covering the practical, logistical, regulatory and social marketing aspects, drawn up by someone who had never once been to a Yolngu community.
‘There,’ Tanya said, emailing the document to me. ‘If they want a plan, give them a plan. Then go ahead and do what you want.’ Tanya then gathered up the children and took them to the pool. They were becoming excellent swimmers, at least.
When they got home I greeted them at the door.
‘Tan, you’ve done it!’ I shouted. ‘It’s a plan that will work, do no harm, gradually find improvements and give us space to learn along the way. I’m even feeling excited about going to Gurrumu now—I can finally see how it will work . . . you’re a genius!’ I hugged her roughly, let her go abruptly and then walked into my office.
An hour later I returned to the living room and leaned on the bench where Tanya was preparing dinner. I began expressing my doubts about the plan, telling her that it was too far removed from demands for ‘units of output’ and measurable outcomes. But this time Tanya interrupted me.
‘This is why we are the perfect team, Bud. I’m here at home completely removed from reality, looking after the kids while you are trying to design and launch a program almost single-handedly.
‘But I listen to your incessant thought dumps and get to think in a bubble—no competing personalities, no politics, no emotion, no fears . . . no mosquitoes or sandflies—so it’s easy for me to do what you just can’t. I can create a plan when your mind is overwhelmed with doubts and complexities.
‘First drafts are easy for me. I love joining the dots and coming up with solutions! The detail and the holes drive me mad but that stuff comes naturally to you. You can take my plan and pick it to bits and do whatever you want with it; make it work in the real world. If it gets your sorry butt out of your bed and back into the land of “I think I can” then it has done its job.’
I frowned. ‘Yeah . . . but . . . that bit about . . .’
‘I know. I just wanted to give you some space.’
•
Tanya had included one paragraph on the management of crusted scabies. It was a vexed issue that nobody seemed to want to deal with but it gnawed at me, and Tanya had suggested starting with the crusted scabies households. They were such a visible and stigmatised group that if the program could improve their lot we would not need football stars and television marketing campaigns to motivate people to aim for healthy skin once again. And if cases of crusted scabies were a furnace of disease transmission to the rest of the community, managing them may have an impact on the rates of scabies even without doing anything else.
Over the past few weeks I had worked my way systematically through the list of thirteen crusted scabies households that Sarah had handed me. It had been one long revolving door of suffering.
The more I learned of their decades of illness, the more I wanted to forget about the goal of scabies elimination. As a doctor, crusted scabies was what I had to work on. The Galiwin’ku trial had demonstrated the futility of running mass dosing programs for scabies as long as there were untreated crusted scabies cases in the region. As it was, the members of the households with crusted scabies were doomed to a lifetime of ill health no matter how hard they tried to stay scabies-free.
I was reminded of the accounts of leprosy and how people were treated, yet this was modern day Australia. It was criminal to leave crusted scabies sufferers untreated in areas with high rates of scabies because they would continuously relapse and be sick.
I started working with Nick Connor, the infectious disease doctor at the Centre for Disease Control in Nhulunbuy. Neither of us knew what to do about crusted scabies but together we decided to do something.
14
HEALTHY SKIN IN GURRUMU
I had been in an unusually positive mood after getting a warm response to my involvement in the impending healthy skin day from the clinic in Gurrumu. One morning as I checked my emails my face clouded over and I moved into my office and closed the door.
It was a long time before I came out. Tanya looked up. I placed my laptop before her.
‘Read this.’
When she finished reading, Tanya looked searchingly at me. I had been on the edge for so long that she wondered if this would be the final straw. Lawrence had emailed to express concerns about the way I was running the program. Only he hadn’t emailed his concerns to me but shared them with key members of the steering committee with whom I worked and whose support was critical for the program to succeed.
‘If they don’t take me out of here in a straitjacket I think we might actually have the chance to do so
mething worthwhile.’
Tanya blinked, surprised.
‘I just spoke to Sam about the email and its implications for over an hour, he listened carefully and he didn’t panic. I feel like I’m seen as a loose cannon. Everyone is pushing for plans, protocols, timelines and key performance indicators and Sam has the courage to remain calm.
‘But more than that, Sam is risking his own money. It is not another grant or publication to him. He wants to do something that really makes a difference. And he knows I will settle for nothing else. Our program is just polite conversation a few times a month for some people, but he is fully invested in this. I have uprooted my family to live out of a suitcase and for a fraction of what I could make in the city. Sam is backing us because we have walked the talk. I won’t let him down.’
A smile crept over Tanya’s face as she remembered how my final year maths teacher had asked me to drop out of the top maths class at school so that I wouldn’t bring down the grade average. I had refused. It was a red rag to a bull and I ended up topping the class and nearly the state. If there was room in my anxious misery to be goaded into the challenge, this email could be just the incentive I needed.
I read my favourite lines from Lawrence’s email out aloud: ‘I heard a lot of platitudes about community engagement and capacity building—which are important, but we have lots of experience about such talk being used as excuses for inaction.’ Lawrence’s words stung, but also created a moment of clarity. From a linear output and deliverables view of the world, I had wasted time with talk and inaction. But from a learning and partnership paradigm, I was right on track. I had done no harm, had proven I had not arrived with a fixed agenda and had identified some promising areas to explore. I had risked relationships with external stakeholders to make sure I did not take any risks in my relationship with patients and my community and clinic partners.
‘I have had lots of experience of such action being used as an excuse for a lack of consultation!’ Tanya said cheekily.
I threw my head back and laughed out loud. ‘Exactly, Tan. Exactly.’
The sleepy shuffle of bare feet ended at the doorway and a mop of curly hair appeared, then two sparkling eyes and a shy grin.
‘You’re laughing, Papa.’
I held out my arms for a late-night hug with my eldest daughter.
•
We needed to find people who could commit to the program for the long term. So we had begun looking for an operations manager to take over the day-to-day management of the project. This would also give me time to work with the clinics on managing the crusted scabies households. But being the community cajoler, putting on a happy face, motivating local staff and knocking on the doors of total strangers—the tasks the operations manager would take over—was a role that would take a special type of person to fill.
Then, one day, just before my trip out to Gurrumu, Tanya asked if I had considered Oliver for the job of operations manager. For a moment my eyes lit up. Of course! Immediately the hope faded.
‘He is leaving to go to Adelaide. He’s not going to want this job.’
‘Just tell him about it. Maybe he will know somebody else.’
Oliver seemed the perfect choice since he had already dedicated himself to scabies for so long and knew more about it in practice than most people. This job would be an opportunity for him to see all his knowledge and experience used for something very satisfying. Tanya was ready to talk to him about the job herself but she knew I just needed time to consider it.
•
On the first day of the Gurrumu healthy skin week Talisha, the young health worker running the event, seemed to feel just as uncomfortable as I was knocking on doors and asking families to become involved. It was her first attempt at organising a community healthy skin week and by the end of the day I was convinced she wouldn’t try it a second time.
For the next few days I joined the healthy skin team as it worked around the community and focused on doing a baseline screening of scabies rates. Talisha Guyula was a traditional owner of the area and a Mala clan leader, so carried an unusually heavy load. As I began to get to know her better I saw a deep determination that spurred her on to serve her community in the best way she could, even when it put her directly in the line of fire. Talisha would see a lot of patients each day but also drop everything and act as translator for visiting staff who needed her help.
Yet Talisha’s day had only just begun when the clinic doors closed each afternoon. She was then expected by the community to be on call for health issues and to care for a disabled cousin whose temper and abuse she would quietly bear. And she raised her young daughter alone, making sure she went to school and studied hard. Each day, against the odds, Talisha would come to work and in this she was supported by a thoughtful and committed clinic manager. Steve had lived in the area for some years with his wife and it was striking how much difference a thoughtful manager could make to bring out the best in a clinic’s staff.
One evening I wandered down to a shed, lured by the music of Michael Jackson, and discovered a big group of teenage boys and young men making toothbrush holders. A teacher and his wife had worked with the community’s plumber to develop an inexpensive toothbrush holder from scrap materials after they learned that people didn’t like their toothbrushes getting dirty and mouldy lying on the sink.
A bit of a men’s shed had sprung up with the plumber and the teacher, both in their early twenties, joking casually with the young men as they all worked on making enough toothbrush holders for the whole community.
When I called Tanya that night I was ebullient. For a couple of hours I had forgotten all about my program and had enjoyed sharing stories and a good laugh with the young men, making something that we could hold in our hands, that people really wanted.
At the end of the phone call I mentioned that I would be home for a week before heading off to Groote Eylandt for the week. There were school screenings and health checks there and I thought maybe the family could move to Groote for a couple of months to organise and run a healthy skin day at a small community in the north of the island where clinic staff had been coping with a large number of children with scabies.
Tanya changed the subject, trying to finish the phone call without addressing the Groote healthy skin day because she could hear a manic note of urgency in my voice. But I wouldn’t let it go. I wanted her to tell me I was right.
Finally she knew there was no way out. ‘It sounds like everything you have been fighting to avoid—going in with expectations to reduce the level of scabies through a healthy skin week with two months lead-in with no previous exposure to the community so no understanding of priorities, no relationships or trust or buy-in . . .’ Tanya felt I was setting myself up for failure, and possibly for more stress than I could cope with at the moment.
‘If it doesn’t work we will just be proving that the old model still doesn’t work and if it does work it will be because we kill ourselves and we will be undermining our demands for difficult-to-find things like long-term commitment, competence and true partnerships.’ Her voice had become thin.
‘Wow, Tan it must be so easy for you to sit there and say all that.’ And the phone call ended with an argument. I was grasping at straws and I knew it but I needed to document a win to gain some breathing space for a slow capacity building project.
Tanya knew she would go ahead and knock on doors with me, doggedly building up a slow hype for a healthy skin day in Groote if that was what I decided to do. We would all despise every moment but given our determination the healthy skin day would most likely be at least mildly successful, as far as those days went. But it was a diversion and a stress that neither of us nor the program needed at this point.
•
Oliver changed his mind about moving to Adelaide when another position came up that sounded perfect for him in Yirrkala. He would be responsible for coordinating community staff and programs in one community, a much more effective way to work than trying t
o spread himself across the whole region.
Tanya was exasperated when she heard about the change of plans.
‘Just let him know about the ops manager position! He can’t make any decision if he doesn’t have the information!’ She rarely pushed me but she felt there was a chance that Oliver might like to own a program with enough flexibility to implement some of his ideas.
On the drive back from Gurrumu, a week after learning just how thoroughly I had lost the support of the Northern School of Medical Research team, I decided to let Oliver know about the job. Tanya was right: I had nothing to lose.
We shouted over the roar of Oliver’s ute as it surfed the deep red corrugations on the three-hour drive back to Nhulunbuy from Gurrumu. The week hadn’t struck me as an outstanding success but Oliver calmly listed the positives and explained some of the reasons behind the difficulties.
There was always a reason, he said. No matter how many times he turned up to discover the person he had organised to meet was not there he never took it personally and simply tried again. And again. And again. Because there was always a reason.
Finally I mentioned the operations manager position, hinting that we thought Oliver had the experience to run the fieldwork. To my surprise he sounded interested.
•
Nhulunbuy had the feel, in some parts, of a middle-class blue-collar slum. Everything was temporary: houses, fences, awnings, shade cloths, clotheslines and car ports. Most of the dwellings aged poorly. During the cooler months there had been a constant haze of smoke as the bush around the town was being burnt off but now there was just shimmering, oppressive heat. Oliver dropped me at the foot of the sacred hill, Nhulun, in front of our Tasmanian park cabin.
‘What’s that?’ Oliver pointed to a big hole in the middle of the still-bare front yard.
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