Timor Tuberculosis Tales

In October 2012 I travelled to East Timor to volunteer at Bairo Pite Clinic (BPC) in Dili, for three weeks.  BPC provides free health care to those in need, and is the most visited health clinic in East Timor, with over 530 people attending the clinic per day (with a single doctor reviewing patients, coordinating clinic and overseeing the various programs).  People travel from all corners of the nation to seek medical attention here, and a number of primary health care programs are coordinated from the clinic, including a very busy TB unit.  This is a very brief synopsis of my experience from a TB program perspective only.

It took me an hour to travel from Darwin to Dili, but I could have travelled to another planet, the differences were so vast.  As I sat outside the clinic on my first morning, amongst the waiting crowds I observed an emaciated man sitting against the wall with his knees tucked under his chin, struggling to breathe, his whole rib cage recessing with every inspiration.  I was tempted to diagnose him on-sight with all-consuming pulmonary tuberculosis.  I then sat in on the morning clinic, and in my first two hours, witnessed seven people (including this man) diagnosed with probable tuberculosis.

The TB section of the clinic consists of two ward rooms with eight and ten hospital beds, and a TB laboratory next to them, where Ziehl-Neelsen staining of sputum specimens is undertaken daily, on specimens ordered for both inpatients and outpatients.

Most sputum specimens are not cultured (specimens have to be sent outside East Timor for culturing, and this is only done after treatment failure with persisting smear positivity).  There is also a GeneXpert machine in use, for PCR and Rifampicin resistance testing.  This is reserved for smear positive specimens, or smear negative specimens where TB confirmation would be useful, eg sputum with haemoptysis; or cases of TB treatment failure.

CXR is only ordered for those in which clinical confirmation would be useful, and patients travel to the radiology department at Guido Valadares Nacional Hospital, approximately 2kms away, if this is required.

The clinic have a coordinated DOTS program, run by competent local health staff with specific training, who provide treatment to an average of 103 new cases per month, including an average of 5.4 children under the age of 5 years old, commencing on DOTS each month.

There is also a TB sanatorium at a fishing village 20 minutes’ drive west of Dili, where I observed approximately 20 people at any one time, living together in a pretty setting behind locked gates, awaiting sputum clearance.

WHO estimates the TB prevalence rate in 2011 for East Timor to be 701 per 100,000 (http://www.who.int/countries/tls/en/).  Other health, economic and education statistics include 54% of infants with chronic malnutrition – the world’s third highest child malnutrition rate.  BPC have a malnutrition program including inpatient area for severely malnourished infants, and a World Food Program distribution centre providing fortified cereal to malnourished outpatients.  More than 40% of Timorese live in absolute poverty (less than US$1.25 per day).  80% are unemployed.  Many of those employed are in the informal labour market, eg fishing, weaving, even selling stones along the foreshore, and therefore not protected by the new National Labour Code which has implemented a minimum wage (US$115/month) as well as other employee rights.  All statistics I could find online or in discussion with local staff reflect a population surviving in extreme poverty, which was certainly my observation during my time in Dili.

In my time at BPC, the TB beds were usually full with constantly rotating admissions and discharges of people with either confirmed or suspected tuberculosis.  TB cases I encountered included: a 56yo man with ten years of weight loss and cough; a young man with overwhelming disseminated TB; a 27yo woman reporting chronic cough who weighed 24kg; a number of cases of TB uveitis; a 60yo woman with total right pleural effusion; an 11yo girl with left hemiparesis, disconjugate gaze and drooping left eyelid following TB meningitis with TB otitis and optical nerve involvement.

The most interesting clinical case for me, due to the diagnostic delay and resulting debilitation, was the presentation of a 32yo woman (alias “Maria”), from a village in Lospalos District, to the east of East Timor, and her 11yo daughter (alias “Julia”).  Maria reported an eleven year history of extensive, itching lesions over her face.  She had a scar on her right clavicle suggestive of previous Scrofuloderma.  She was well nourished at 48kg, but reported some weight loss and night sweats.  She reported no current or previous respiratory symptoms.  Some right sided sub-maxillary lymphadenopathy was palpable.

Julia presented to the clinic with her mother wearing dark sunglasses, with a chronic, purulent discharge oozing from both eyes for three years.  Upon removal of her sunglasses, she had signs of photophobia, and was unable to open her eyes more than narrowly and briefly.  She was well nourished at 30kg, and reported no weight loss, fevers, night sweats or cough.  She also had palpable right sided sub-maxillary lymphadenopathy.

The doctor immediately diagnosed Maria on clinical grounds, with Lupus Vulgaris (TB of the skin caused by haematological spread from a primary source elsewhere, occurring in people with moderate immunity such that healing occurs in one area, whilst the lesions extend in another).  She also had probable previous Scrofuloderma (TB of the skin caused by contiguous spread from an underlying focus – in this case, a probable supra-clavicular lymphadenopathy).  Julia was also diagnosed immediately, with probable TB conjunctivitis, contracted by direct contact with the lesions on her mother’s face over many years.

Sputums were not taken because neither had respiratory symptoms.  Point of Care HIV and Malaria tests were negative.  Both were commenced on standard TB treatment immediately, and admitted for observation.  Within 48 hours Maria reported that her facial itching had ceased.  Within 72 hours Julia, who had not attended school for three years due to the vision impairment caused by her conjunctivitis, removed her sunglasses and began playing in the sun.  Once able to open her eyes, it was noted that she had phlyctenular kerato-conjunctivitis, inflammation of the conjunctiva and cornea caused by microbes, which has specific clinical features and may result in scarring and vision loss after healing.  TB Uveitis was also diagnosed, as the edges of her pupils had visible nodules, as per the photograph (from http://www.retinagallery.com).  Upon discharge one week later, her visual acuity was 36/3 (left) and 12/3 (right), with probable permanent damage caused by the uveitis.  No specialist follow up was available for this.

I spent some time talking to Maria via a Tetun translator.  She and her husband are subsistence farmers, growing corn and other vegetables, which they use to feed themselves, and also sell locally.  Maria’s husband is a carpenter, but this work is casual and irregular.  Julia is the eldest of four children, two of whom had stayed home with their father, while the youngest (3yo) had travelled to Dili with Maria and was staying with extended family whilst Maria and Julia were hospitalised.  No other family had any signs or symptoms of TB.  The only contact tracing undertaken is to ask this question, and recommend medical review for anyone reporting symptoms.

Traditional style homes in Lospalos are thatched, elevated huts like the photograph on the left.  However, Maria reported living in a small concrete, ground-level home.  My observations in Dili were that those with a better standard of living have concrete style homes, such as the one on the right, while many live in thatched-roof, mud-floor, bamboo huts without running water or sanitation.

Maria and Julia had visited many clinicians and healers over years, including at two sub-district hospitals, looking for a diagnosis/cure.  In 2010 they spent a week as in-patients, where Julia was given unknown tablets and unknown eyedrops, neither of which had helped.  Maria had been given a number of different creams over the years, none of which helped, and some of which had exacerbated the itching.

The journey from their home in Lospalos District to Dili (approximately 250km) cost $8 each on a bus which took approximately 5 hours.  They stayed with family in Dili, and attended a private clinic first, who were unable to help, but advised them to attend BPC.

This case highlighted the issue of diagnosing a relatively rare form of a common illness in high prevalent settings, with limited education and resources.  The rapid improvement once correct treatment had commenced, after so many years of unexplained suffering, with permanent damage related directly to the delayed diagnosis, was at once astounding and devastating.

Issues working at Bairo Pite Clinic included an extreme shortage of even the most basic supplies such as gloves, masks, medications and dressings.  The below photograph of one of the few handwashing basins at the clinic shows how basic the utilities are.  Taps and water outlets are damaged, and liquid soap is watered down so much that it does not lather up.

Coming from a low-prevalence, high-resourced Tuberculosis Control program in Australia, the experiences I had at BPC were informative, astonishing and life-changing on many levels.  I would highly recommend the experience, for anyone genuinely interested in global health particularly in our geographical region.

Another Limousine Adventure

Very funny morning today.

Maria (nom de plume, as are all the other names herein) – Mathew’s aunty who I like but drives me nutsknocked on the door at around 6am. WB (7yo foster child) woke me to tell me someone was knocking (I don’t let him answer the door). I opened the door and Maria was sitting on the ground outside. “Maria! You can’t come around here this early and wake us up, it’s not on!”. Shut the door and walked halfway back to bed, then thought of something else so I went back and opened the door again, she was still sitting there, and I said “I have to go to work, WB has to go to school, this is not on!”, shut the door and went back to bed.

I knew it wouldn’t be anything urgent – she knows how to call the police or an ambulance.

When we left for school, we drove past the place where Grandad is staying now, and Grandma arrived the other day and is staying there with him. I spotted them sitting there, so we popped in to say hi quickly. Grandma jumped up holding Ashley, Maria’s 1yo baby, who is over 1yo now, and we had a hug, then some cuddles with smiley Ashley. Grandma then said, could she get a lift to K’s place (one of the carpet baggers she paints for). Yes, but you’ll have to be quick. I said, where’s Maria? There! I looked over at Maria, and she was sulking at me. So I ignored her.

Then Alison (Mathew’s maternal aunt, a terrible drinker around the riverbeds etc) came over with Ashley’s stroller and I didn’t realise she parked it behind my car. WB dropped something under the front of the car, so I told him I’d reverse back so he could get it, and I reversed onto the stroller! I moved forward, but it was somehow jammed onto the car, so Allison is behind there, trying to get the stroller off the limousine, and WB gets into the back seat, then Maria comes over and continues to ignore me, so I ignored her back, so then she said “Allen? You know why I bin come round? Because police let me out, because last night JON bin make me drink grog! He’s no good, I’ve got big problems!”, and she starts crying. Same old story, she fights with hubby and her world falls apart, she’s very paranoid about him. I said but you can’t come round early when we have to get up for work and school. Crying, crying, so I hugged her and we’re friends again. And hopefully next time she has “big problems” with hubby, she’ll tell me about it at an appropriate time! (Hubby is the guy who crashed his car oneday early this year, into a tree, and took off into the riverbed when the cops came after him, and escaped, then came around to my house telling me this mad cowboy story which highly amused me).

Then Maria, Allison, Grandma and Ashley all get in my car, with WB squashed into the back. I said, I can’t drive around like this, I’ll get in trouble, we need to give Ashley his own seatbelt. Alison, you’ll have to get out. They pile out and I put Ashley in the middle, and put a seatbelt on him, and Alison says “But Allen? I wanna come too!”. But there’s no room, if the cops pull me over they’ll make me pay $450.

It’s okay Allen, we’ll take taxi!

So they pile out again, I put the boot up so they can rescue the (miraculously undamaged!) stroller, and WB and I drive off again!

Ha ha ha!!!

I think they were a bit cranky at me, but they’ll get over it – I’m not breaking the law like that, I happen to value keeping my drivers’ licence!!!

Third World Thoughts

When I was 14 years old we traveled across the Tasman Sea from New Zealand to Australia on a family holiday.  It was 1983 and one of the first international news items to enter my consciousness had been playing out on our tv screens.  Footage of starving children in the throes of death had entered our lounge room from the drought-stricken, war-torn deserts of Ethiopia.

I sat on that enormous British Airways 747 Jumbo Jet, looking out over the vast expanse of ocean, thinking about how wonderful this was, but experiencing pangs of guilt that we were able to do something as decadent as international travel, while elsewhere children were not so lucky.  I wondered what those basketball-stomached, stick-limbed, dying children would think, if they knew that there were people like me in the world, living extravagantly whilst knowing about, and not trying to alleviate, their suffering.

Since then I have lost count of how many international flights I have taken, but it would have to be many dozen.  And if you include domestic flights as well, then it would be in the hundreds.  All for the purpose of continuing my privilged lifestyle (moving to a preferred location for work; holidays; visiting family or friends), rather than out of any real necessity.

I flick through the pages of Qantas Magazine, past the myriad pages of advertisements.  Ralph Lauren clothes, Paspaley pearls, Maserati cars, Tiffany and co. jewellers, Calvin Klein, Hugo Boss.  All targeting international travellers with money to spare for extravagances aimed purely at their own comfort and vanity.  This time I’m traveling home to Alice Springs from Dili in Timor Leste, a half-island nation off the north coast of Australia.  It takes an hour to fly from Dili, on the northern shores of Timor Leste, into Darwin.  Then another two hours south to Alice Springs.  So Darwin, my capital city, is far closer to the people of Timor Leste, than it is to me.

In Timor Leste there are no Ralph Lauren or Cellini Sport clothes, as advertised on this plane traveling out of their country.  Yet there are plenty of extremely handsome men and women.  One of the things that makes them so handsome, is their lithe figures.  I’ve spent the past three weeks weighing, and reviewing the weights, of many unwell Timorese, and the average adult weighs in the region of 45kg.  The reason the population are all so slim?  Malnutrition.  A 2011 UNICEF report claims that 54% of Timorese children are malnourished, putting the country behind only Afghanistan and Yemen, in the international competition of chronic malnutrition.  Lack of access to affordable food is a major lifestyle stressor to the Timorese population in general, with many people, especially in the Districts, surviving as subsistence farmers.

I have just spent three weeks in Timor, volunteering on a health program.  It wasn’t my first time to a Third World nation, I spent time in Ecuador five years ago, and I’ve travelled the First World extensively enough to have seen poverty in the form of London’s Cardboard City, homeless families on the streets of Budapest, beggars and bag ladies in places such as Seville, Paris, Krakow and New York.  Not to mention the poverty that the remote communities and town camps of Central Australia have exposed me to in over a decade of living and working with Australia’s marginalised indigenous people.

Living in Alice Springs, I’ve developed attachments to any number of indigenous families, and some people have tried to claim that I have some sort of saintly quality because of this.  Helping a few disadvantaged kids who come my way, feeding a few hungry people when I can, that sort of thing.  This could not be more wrong.  Nothing I do forfeits any of my own comforts and wants.  I live in a nice house, have a comfortable job, never go without anything I decide I might want or need, travel regularly, have regular contact with my family whenever I want it, there are no particular risks to my safety or security as I go about my life.

The real “saints”, are the parents, grandparents, aunts, uncles, and others, who go without as a daily existence, stretching limited financial resources in order to feed one more mouth in the crowd, sleeping with eight kids in their bed behind a locked bedroom door for security, deal with noise and chaos every night as drunks take over the home to continue their partying, burning fires to keep everyone warm because there is no power and not enough blankets, going hungry because there’s just not enough money to feed everyone.

Or the doctors, nurses, social workers, psychologists and humanitarians who have chosen to give up the comforts they were born into, to live and work in the Third World, offering their skills and knowledge in order to try and alleviate some of the worst poverty.

For years I’ve heard mention that I apparently belong to the “top 5%” of the world’s wealthiest.  It doesn’t always feel that way, when I can’t buy myself a new car to replace the tin can that I’ve been driving into the ground for almost 14 years, or have to select what I might do with my holidays because I can’t spend my whole life travelling as some others I read/hear about, are able to do.  But my perception of suffering revolves purely around not having extreme wealth.  I never go hungry, I never have to worry about where I might be able to go in order to stay safe for a night, or that I may have to forfeit any of my needs.  The only forfeiting that I ever do, revolves purely around my wants.

95% of the world are not so lucky.  A fact that I’ve found difficult to really relate to, even whilst living in Alice Springs, surrounded by the extremes of my own lifestyle at one end of the spectrum, and the lives of some of Australia’s most disadvantaged people at the other end of the spectrum, some of whom camp in the riverbed at the end of my street.

Friends were living in Timor Leste and suggested that I come over to visit and maybe volunteer some time at a clinic, where I would be amazed at some of the things I would experience.  I’ve never volunteered my time or skills in this way, and had reservations around how I might cope, and so to go somewhere with friends living a similar experience, who could offer support, was ideal.  After giving the idea some thought, I decided to take the plunge, and arranged to travel there for three weeks, with the sole purpose of my trip being to volunteer on a TB Program.  I work on a TB Program here, but our rates of TB are so low, that we see very few cases of active disease, on a very erratic basis.  The low rates of disease, combined with our access to plentiful resources in the healthcare setting I work in, means that our program runs in a vastly different way to that in a region where there is a high prevalence of disease, but very limited resources.

I’ve been home for two days now, and can safely say that the profound effect this experience has had on me, will be with me always.  Not only did I see the most interesting cases of active TB disease, but I cared for my first ever AIDS patient, who died whilst I was there; saw the way skilled diagnosticians can work without any of the diagnostic tools that we take for granted in Australia, relying on educated guesswork and therapeutic trials to determine a person’s diagnosis; and accepting death or permanent but preventable outcomes as an inevitable result from misdiagnosis or mistreatment.  I lived as a minority white person in a majority dark skinned population, where my wealth was (rightly) assumed, making me a target for constant bargaining and forcing me to reflect on the ethics of enjoying my wealth whilst being all too aware of the poverty surrounding me.

On arrival in Timor Leste I was met by an apparent absence of traffic rules with hilarious sights of crowds hanging out of the 10c per ride Mikrolet minibuses, sitting on the roof of trucks, riding helmetless on motorbikes with the wife and two kids holding onto each other behind; the chickens, roosters and pigs running about the streets freely; hundreds of kids riding bikes in the busy streets, up to five-abreast.  The culture shock was obvious, but there was something highly appealing about it.

My first night was spent sweating it out whilst catching up with my friends and a group of their friends.  The following day I wandered along the eastern coast from the town centre, into the Meti Aut area where fishermen row the seas in their little colourful row boats, while the expatriate community soak in the sun and sea on the white sands of Praia da Areia Branca.  One group swim in the shallow waters of the clear ocean, snacking and sipping on food and drink sold at Australian prices, served by staff earning Timorese wages, while the other group exist to serve, either by employment at one of the expat-owned beachside cafe’s, or wandering the beach looking to sell their fruits or touristic knick knacks in the hope of feeding their families if they can bargain up enough.

To a third world naiive such as myself, the contrasts were flagrant.

From relaxing on the beach and snorkelling at the coral reef referred to as “K41”, 41km east of Dili, to starting my time as a volunteer at the clinic, the contrasts continued.  The heat and humidity were oppressive, and my hair took a turn for the worse, transforming from a straight, short, manageable bob, into a frizzed out, uncontrollable mess.  The ward rounds sometimes had up to 30 people walking the wards, their breath and sweat contributing further to the already heavy air of the rooms where far too many people were accommodated in tiny spaces, lying more often than not, directly on the plastic lined mattresses, due to a constant shortage of bed linen, hoping to find a cure for their often-unknown diagnoses.

The dirty walls with paint peeling off them, the creaking ceiling fans rotating so slowly as to contribute nothing to the air’s circulation, the crowded ward rooms, rusty old drip stands, chipped concrete floors, were all visible features of my first experience working in a third world healthcare setting.  But they were not the most significant deprivations.  The real  suffering comes from the basic, or absent, diagnostic tools available.  And when a diagnosis is made, the limited treatments available.

The clinic’s supplies seem reliant in large, on donations coming in from the Australian Rotary Club.  Some philanthropic donations are also available, including some extremely generous endowments made to individual patients, such as the young man transported to the USA in search of a diagnosis (which was made, but he was sent home without appropriate treatment, and so will die from his cancer); or the young cancer patients who were sent to an Asian city for cancer treatment, courtesy of a wealthy businessman who heard of their plight, and were coming home cured, the week after my placement finished.

The daily grind at the clinic was wrought with lack of supplies.  Not enough gloves to go around.  No tape to secure bandages; only certain sized bandages available.  No disposable towels to rest wounded limbs on whilst they are sutured, so that blood and flesh have nowhere to land but on the plastic mattress.  Only a few handbasins in locations distant from many of the hospital beds; limited supplies of liquid soap so that it was  diluted so much that you couldn’t get it to lather up.  Very limited supplies of antibiotics and painkillers stronger than Paracetamol.  Not even enough gauze some days to deal with the dozens of cases of wounds coming through the Emergency room.

A woman diagnosed with HIV who died from AIDS-related dementia alongside her husband and son who sat helplessly beside her in the bare, concrete room where she lay on the plastic lining of her hospital mattress for days, calling out with delirium.

A man with chronic liver failure of unknown aetiology, who spoke fluent English to me oneday, smiling at me with his teeth seeming to be far too huge for his gaunt, skeletal face, and who was dead the following day.  His wife, who wanted answers as to what had done this to her husband, will be grieving his loss now, without ever finding out what it was all caused by.

The room full of malnourished babies and toddlers, all weighing a small proportion of what they need to weigh for adequate brain development, and not gaining any weight because there was no trained staff to engage with them and their mothers, to monitor their intake and teach/encourage healthy habits.

The many TB patients diagnosed on a daily basis, put onto World Health Organisation supplied TB medications.  Those with infectious TB sent to a sanitorium outside the city to wait for the first two months of treatment to render them no longer infectious.  Where some days they have nothing but rice to eat, but where every single person assured me that they were eating enough.  Including the lady who at diagnosis of her TB weighed 28kg, and upon review two weeks later, had dropped to 26kg.

The lady from a remote location with a rare and physically mutilating presentation of TB, who had been seeking diagnosis and treatment unsuccessfully for eleven years.  Her 11yo daughter came with her to the clinic, presenting with a three year history of purulent discharge from her eyes, caused by the Tuberculosis bacilli, which had blinded her for three years and which she had contracted from her undiagnosed and untreated mother.  This story was an astounding example of the difficulties of diagnosing a common illness which can affect the body in countless ways, without adequate diagnostic testing tools and with a health system that can only offer very basic education to it’s employees.

I have come away from these experiences, and the many more that I had over the past three weeks, changed for life in a professional sense.  But far more striking than this professional experience, was the personal experiences I had in a country where I was a visible minority, observing the behaviours of people living in poverty as they interacted with me, who has everything in a material sense.

As I left my hotel one day, I walked past the corner marketplace made of bamboo sticks and banana fronds selling lettuces, spring onions, and various other fresh produce.  Strolling along with my laptop, e-Reader and camera packed for an afternoon of relaxing in the breezy bar of the elevated, open-walled Esplanada Hotel, a little boy of around eight years old appeared out of nowhere at me, holding a dirty plastic cup out at me with both hands, exactly as I’ve seen a theatrical Oliver Twist do, and begging me with pleading eyes, to fill his cup.  Not knowing what exactly he wanted, I could only assume, as dishevelled looking as he was, with his ripped and dirty clothes, bone-thin legs and arms, that all he wanted from me was water.  And of all the things I had packed in my bag, a bottle of water was not one of them.  I had to repeatedly say “no”, and walk away.  The image of this, and the guilt I felt about not offering him something so simple, haunted me the rest of the day, and still does when I think about it.

My discomfort at the constant bargaining with the local yellow cab taxi drivers also played on my mind constantly.  Locals pay around $1 to $1.50 for a taxi fare to basically anywhere in Dili.  Expatriates can expect to pay between $2 to $3 per fare, which is always agreed upon during a bargaining process before entering the cab.  I was catching cabs almost daily, and I can afford a $3 fare without being affected in any way.  So when I was told the fare would be $5, I really didn’t mind offering them a $2 tip.  However, I also did not want to feel as though extra money I was offering was not on my own terms, and I was told often by long term expatriate residents not to offer higher fares which would increase the cost of a taxi for everyone, and not everyone can afford price increases.  Yet many of the taxi drivers clearly couldn’t afford to maintain their own vehicles very well, with parts falling off and missing, doors that would only open or shut under certain circumstances, parts taped together, etc.

It’s not possible to help everyone, but when you are face to face with suffering, it’s also difficult not to help in some way, and so I did give money to a few people.  The most memorable for me, was a teacher, whose husband died of an unknown illness at the clinic after a few days as an inpatient.  They both spoke English, and it was special for me to be able to find out about them, something I wasn’t able to do with most of the patients due to the language barrier. Their village is in the mountains. In the 1970s she told me she remembers spending 6 years of her life hiding in the mountains, from the rampaging that went on, with her family. Then the same thing in 1999, but she said they only had to hide that time, for a couple of months.

She described working as a teacher at the school with children who have to come down from the higher parts of the mountains in order to attend, so they stay in her home with her, and she already has her own six children. Her school principal wanted her to start teaching English, but she didn’t speak English (she speaks Tetun, Portuguese, Indonesian and her own local dialect) so she said no, but the Principal kept pressuring her to teach the kids English, and her husband then told her “you can do it, you should do it”.  So she got a dictionary and learnt how to say Hello, then taught that to the kids, and everyday she learnt new words from the dictionary, “but sometimes it is difficult, you know, to say the pronunciation correctly, so I find Australian friends, even the soldiers or the visitors who sometimes come, and I ask them, how can you say this word, and they teach me”. And now she teaches English and her students can all speak English!

Since her husband fell ill a few months ago, they had left their village to look for someone who might be able to help with a diagnosis and treatment.  They left the children at home to look after each other – a 12yo daughter being the eldest, who was looking after the other four children, plus the mountain children who travel down for the school week and stay too. She said to me “You can come to my village and stay, but our house is very simple, but you can stay with us if you don’t mind”!!

These are all experiences that had a significant impact on me, and that will remain with me and play on my mind always.  How can we, in the “First World”, know that elsewhere, there is such extreme suffering, and not do something to relieve it?  Yet we are all guilty of this, and how can we possibly help enough to make a difference?

Miscommunications Abound, as does Forgiveness

This title describes perfectly, the existence of living with another culture.

Most people, it turns out, will forgive you for being human.  And nowhere is a person’s humanness so prominent, as during time spent with those from another culture.

Misunderstandings abound, and only a minority of these misunderstandings relate to conflict.  Most of them are just a complete mismatch of comprehension.

The funniest conversations I have with remote indigenous people here in Central Australia, who more often than not speak English as a third or fourth language, and for whom technology is useful but not necessarily used conventionally the way most of us might use it, are by telephone.

For example, yesterday my lovely friend Kenny, the grandfather of Mathew who I fostered a number of different times in previous years, and who still features regularly in my life now, as a young adult, called me.  I have just returned after three weeks away.  He has a mobile and it keeps him in touch with family who are flung far and wide across the Northern Territory and Western Australia while he’s forced to live in town for health reasons.  He grew up in remote communities and locations, and talks of walking for months at a time as a young man, which would have been in the 1950s or 1960s, across vast expanses of the Gibson and other Central Deserts.

The conversation went something like this:

Hello?
Aaaallllooooo!!
Oh, Hi Kenny! How are you?
I’m ‘ERE!
Where are you?
‘Ere!
Where?
Right ‘ere, I bin move, to (a hostel).
Oh really? Are you there now?
Nah! I’m ‘ere!
Where?
I bin walk down to grass, I’m sitting on grass! Come and see me!
Oh! So you are living at (the hostel), but right now you’re sitting on the grass?
Yeah! Come visit me!

He is one of the most delightful people I know, and it’s always a happy experience talking to him, even though we don’t always “get” each other.

I make regular mistakes during my encounters with people like Kenny, most of which I expect I don’t even know I’ve committed.  And they make regular mistakes with me.  Yet it’s okay, we don’t have to fully understand each other, to know that we like each other.

In my experience, forgiveness doesn’t come easily in my own culture.  It also doesn’t seem to come easily between indigenous people at times.  Perhaps this is because when we share cultural common ground with people, we make much stronger assumptions about the accuracy of our own interpretation of a person’s intentions without making any room for possibility of misunderstanding?

There is something truly refreshing about the experience of knowing Kenny, Mathew, and the hundreds of other people I know and like but don’t always understand.

A Week in the Life

Last week some money was stolen from my bag by a patient who I left in my car, alone, with my handbag.  Only about $20, and I know that he was hungry.  I get why he did it, and because I can’t be sure of anything, as I only suspected something after he’d walked away, I see little point in following up on it beyond keeping my bag with me next time.

A few days prior to that, I found myself driving two men around town, looking for their stolen car.  We spent 1.5 hours chasing this green station wagon (figuratively speaking), that always seemed to be a step ahead of us.  It was here this morning; we saw it at lunchtime; etc.  Eventually we gave up because I had better things to do.  The owner had given this young guy the car keys and it was to be returned to him the following day.  By the time I came onto the scene, it had been gone for four days.  The owner, an elderly man in poor health, owes money on the car, and clearly thought he may never see it again.  His worry was palpable.

A few days later I drove into the camp, and a green station wagon was in the yard.  “He brought the car back!”.  Yes, and  he fixed the fuel pump, that’s why he kept it, because he was fixing it.  Everyone was thrilled and the car thief was a great friend.

Last night the family of a young man recently arrested and charged with a brutal murder, rang me to talk from their remote community.  Last time I saw any of them, I was dropping grandma at the Bush Bus, so she could travel home and be with everyone in their time of shock and grief.  She was furrowed with worry and sadness.  It’s been a shocking experience, yet they seem to be okay and coping.

Yesterday morning I visited a young girl in hospital who a young man I know extremely well has been in a relationship with.  She is unrecognisable after being beaten to a pulp.  It is not the first time he’s done this to her.  My connection to the perpetrator had me feeling nervous that their anger may be directed towards me in his (in-hiding / on-the-run from police) absence.  Instead, Mum, who spent the night curled up on the end of her daughter’s hospital bed, hugged me.

Three nights ago I received a call from Western Australia, where a young woman I know has been waiting to deliver her first baby in the nearest main town.  The baby was due end of September.  It was 11pm when she called, and the beeping of the answerphone woke me.  I rang her back and launched into a telling-off about please not calling me so late.  She replied “Okayy, but Helen?  My back is REAL sore……”.  Right, well I can’t help from here, you’ll have to get someone over there to check you out.  “Okkkaaaaayyyy”.  I hung up thinking, gosh, she does sound like she’s in pain.

The next afternoon I rang her number to see how she was, and her partner answered excitedly, with
“Helen!  My mother in law!  She bin have the baby, it’s a baby boy!  He’s real fat, he got fat little face, fat body, fat little legs.  Real NICE baby!!  You should send clothes!”.  It turns out she was in labour while I was busy telling her off for calling me so late, and she’d rang me for some reassurance/advice, which never came!  But they’ve forgiven and forgotten because they have a nice, fat baby to celebrate.

Yesterday afternoon the young man in hiding, came to see me after his hunger couldn’t keep him away from a potential meal any longer.  I did feed him, but I also launched into the longest lecture of my life (which is saying something, given the lectures he has had from me over the years) about the wrong path he’s on.

Just another week in the life …

My Adoptive Family

It’s ten years now, since I became involved with some local indigenous families.  The first four years of my life, I lived in Alice Springs and had contact with indigenous people, some of which I have vague memories of; and for about four years in the 1990s I worked with indigenous people in hospital settings.  But only in the past ten years could I say I had anything much to do with indigenous people on a personal level.

 

Australians are highly critical of indigenous people, who largely live on the peripheries of mainstream society.  That is a story for another time.  But I have been privileged to experience the positive side of indigenous life, and it has been a genuine privilege.

 

The experience of belonging to a large extended family has been amazing.  I’ve been adopted by a hundred or more people, because of a friendship and mutual respect that started out with one member of the family, and grew rapidly.  Once the friendship was confirmed, I found myself transforming from friend to family – I was informed who my sisters were, and who my mothers, brothers, aunts, etc all were.  I have in-laws now, and am even a grandmother – despite never having had any children of my own!  Most of the time I have no idea whether I’m talking to a sister, mother, aunt or cousin; it’s just too confusing to get my head around.

 

I’ve been allowed to be me, warts and all, and I’ve received unconditional friendship and love.  We have fun, we share time together (although my time is always limited and I know I’m seen as the one who flits in and back out again without stopping to smell the roses).  We have grieved together (Pastor Eli was my “grandfather” who died at 83yo.  The day before he died, I visited him and he told me I was “a good girl, my friend”).  Other, much younger, mainly men, but also women and children, have also died.  I never knew grief the way I have come to know it in these years.

 

From birth, the babies are taught my name, and told who I am / where I fit into the family scheme.  When I do “whitefella” things, this is explained to the babies as just that – “whitefella way”.  They listen to me when there’s something funny to say, and they listen to me when there’s something serious to say, even if it’s something upsetting.  I have had to tell people that their wife is dying; that their brother is in jail; I’ve helped look for runaway kids; we have fought over things; I’ve been to the watch house, court, jail, etc.  There’s no grudge holding, no bitterness, we’re imperfect and that is allowed.  If I get upset with someone, or they with me, we’ll hear each other’s point, we may even stop speaking to each other for a while.  But the bond doesn’t break and we continue to belong together, even in times of conflict.  It’s natural and real, and there’s no fair-weather-only assumptions.

 

The first child to adopt me as his “mother” was Mathew, whose parents both died in the year that he turned 11.  He moved in on the assumption that I would look after him when others couldn’t.  Only I didn’t know that he was moving in, I thought he was “having a sleepover”.  It turned into a year-long “sleepover”, and was an experience I could not have imagined or predicted.  He is now about to turn 18, and we have had many ups, many downs, and I am well and truly ensconced as his “Mum”, which automatically makes me a Mum to his sister, and their many cousins.

 

Susie, his cousin, then nominated me to authorities and moved in.  That was a different experience altogether, and she is also a very special young woman who deserves far better than life threw at her.  She has a Mum, but I have been adopted as her “carer”, and she occasionally pops in to say hi, and I love her to bits.

 

Being “Mum” to these two kids resulted in my maternal role extending out to a lot of young people who don’t see it as anything other than landing-on-Mum!  It’s bizarre, not having ever wanted to be anyone’s Mum, to have fallen into this role.  They’re young people who I like, whose company I enjoy, and who I am more than happy to have around.  And thankfully I get plenty of time to myself in between the visitors.

 

Recently Mathew’s sister called me from Western Australia.  Her partner’s football team had just won, and there was a lot of noise going on in the background. She put him on to say hello, and he said to me “Hang on a minute”, then shouted out into the crowd “Hey you mob! Quiet! I’m trying to talk to my mother in law over ‘ere!”.

 

There have been many hilarious conversations and situations over the years.

 

 

The last ten years have been more uplifting, educational, heartwarming, and memorable than I ever imagined possible.