Tag Archives: Cambodia

The Eff Word.

Prepare to be offended if you dare.  If colorful language offends you, if choosing to not find fault in a person’s HIV status offends you, well, maybe you should just eff off.  Just to set the tone. And next time I need to use it, it won’t just be the eff word.

I am going to paint you several scenarios.

Firstly, a homeless family squatting in an abandoned building.  A mother and her two babies.  Mum rifles through garbage overnight to find resellables: cans, copper wire, water bottles.  She makes about $2 on a good night, less than twenty cents on a bad one.  She found out she was HIV positive five years ago when her husband fell ill.  She soon found out that her elder son was also positive.  So here is my first point that may cause offence: does it make you feel better that she was exposed to the virus by her husband?  Would you feel less empathy toward an individual that was an intravenous drug user? A prostitute? Do you need to feel that a “victim”is innocent?  Does there need to be a “victim?” Does there need to be an “innocent?”  Is it her husband’s “fault?” Does someone have to be at “fault?” Can’t it just suck that this disease exists? And that this woman lost her husband, her job, her home, her friends, her life, her dignity to it?

Secondly, an international charity organization.  An organization that has charged itself with the noble deed of assisting homeless HIV+ individuals and families gain access to medical care, housing, personal income production – without taking the children away and leaving the parents to die.  The kind of organization I would give my own personal dollars to, based on the above.

Thirdly, donors.  Donors that want to help children, babies, with HIV.  Donors that want results: statistics of improved health, education.  Donors that forget to ask about the baby mommas and pappas.  And the unconditional love that those baby momma’s and pappa’s can give.  And if those momma’s and pappa’s have sadly passed, donors should ask about grandma and grandpa, aunty and uncle, sister and brother.  Because empowering a family to take care of their own is in the best interests of the babies and children.  And it is far more cost effective than the Dickensian model of institutionalization that is sometimes irrationally favoured.  Why go to the trouble and expense of building an orphanage when you could improve the foundation of a family?  Why?

So back to scenario one.  Why on earth is this family living/dying in filth? Particularly when HIV is one of the better funded issues in this country.  Millions have poured in over the years so there should be options – surely?  At the risk of oversimplifying, there are two basic reasons and I hope they both shock you – because they are both laugh out loud ridiculous.  And they both relate to the second and third scenarios.  Let’s start with the third. There is an acronym that is the politically correct way of referring to beneficiaries who are HIV+.  It is PLHA and it stands for people living with HIV / AIDS.  But in my recent experience it should stand for PDHA, switching the living to the dying.  And I believe that donors should use this is an indicator, a bench mark, they should request the organizations they fund to convert people from PDHA to PLHA.  And their “PEOPLE” should not just be children, their “PEOPLE” should be people.  And don’t limit yourselves to children and mum’s and dad’s.  What about those without kids?  They are somebody’s kid, brother, sister.  They are somebody.  And they don’t deserve to be ignored either.  I believe that when people switch from PDHA to PLHA, they are the most powerful advocates a community can have in relation to HIV awareness and prevention, thus reducing the cost of community education in awareness and prevention, effectually nullifying it in fact.  But I have digressed as usual.  The point I was trying to make is that there are simply not organizations out there to refer this case to.  They don’t exist (or at least barely exist).  Not because no one has thought to indiscriminately assist PDHA /PLHA.  But because there is no money in it.  It isn’t sexy enough.  Emaciated, sick kids = $$. Empowering families to take care of their own is not so sexy.   I can call numerous organizations right now and they will swoop in and take both kids off this momma, give them access to medical care, food and education.  If the kids are extra lucky they will get to see their mum from time to time.  While she slowly dies alone.  I told this momma as much but she already knew.  And it torments her.  And no momma should ever have to consider such a decision, especially when her kids are the reason she fights everyday for their collective existence.

But we did find one.  We found an organization to help.  Residential, medical, followed up with income production after they gained their health.  Refer scenario 2.  BUT.  I have found more and more that there is almost always a BUT.

I didn’t mention earlier that there is more than one family group in this situation.  They have met over the years and have come to live together for support and protection.  They help each other out when they are sick, didn’t find enough cans, need a laugh or a cry.  Their emotions change on a daily basis.  Bitter, angry, happy, grateful.  Hot, hungry, thirsty, sick, dirty, clean.  It makes me uncomfortable when they cry over receiving a meal.  Because nobody should ever be that desperate.  But they are also feisty.  I admire their feistiness.  It is a strong indicator that they haven’t given up yet.  They curse – a lot.  Cursing is my personal strength in the local language.  I know how to differentiate between cursing for emphasis, for anger, for insult, for a laugh.  And even if I didn’t, I wouldn’t begrudge these individuals, these people, the self expression that swearing can provide.  Which brings me onto the second reason.

So finally, two weeks after contacting aforementioned organization and confirming there were vacancies in their program, their field worker visited, and left soon after.  They had met in the past.  And the field worker said they had been exited from the program for cursing staff.  Fuck your mother.  Those three words.  Granted, it was repeated, again and again and again. Fuck your mother! Fuck your mother! Fuck your mother! Joi mei mai! Joi mei mai! Joi mei mai!  But really?  Come on.  Add a layer of skin or ten before engaging in your line of work.  If they had shoes to wear you should try standing in them, maybe have a walk around, as Atticus Finch would advise.  Because maybe then you would join the Joi mei mai chorus, rather than deciding that somebody deserves to die in filth for their potty mouth.

So back to donors.  Do you ask charities their beneficiary “exit policy” before you give them all those dollars?  Are you asking for unrealistic expectations of “successes” for your dollars that are pushing them to force out those that don’t conform, the harder cases?

Charities: do you feel so pressed to present the families that you saved to the donors and the world that you feel ok about showing the door to the ones you think might take too long?  Or are harder to deal with? That have anger to express that comes in the exultation of the Eff word?  Did you forget what the money was entrusted to you for?  To help those that need it most? Or do you expect people to bow and scrape and show how desperately grateful they are in order for you to spend somebody elses’s money on them?

I really wanted to add in religion.  Because there is religion involved in this.  But then this post may never end.  And I don’t want too much hate mail this week.   I am tired and angry enough.  But don’t worry, I’m wearing my extra layers of skin so if I’ve made you mad enough to curse my mother – bring it on!  She won’t mind a bit, she taught me well enough to understand that most insults you receive in life are misdirected, sometimes you just get in the way of the anger.  And sometimes that can be the best thing you do for a person: let them get the anger out.  So let it out.

But really, what to do?  Ridiculous is that we even came across these families because they should have already been assisted and should be doing well on their own as PLHA.

The joy is one of the other mothers gave birth to a beautiful baby boy the other day.  Amongst the filth.

And the funny is that he is the cleanest thing there.  At least for now.  And she hasn’t named him yet, but she is leaning towards the Khmer word for “hurry”.  Because he was quick, too quick for her to get to the hospital.  But he better grow up quick if he wants to get to know his mum.  So maybe it is the best name in the world for this beautiful little boy.


The Invisible Boys.

With the lights out, it’s less dangerous.

Here we are now – ENTERTAIN US!

                                                             -Nirvana

I spent my afternoon with some of my favourite people in the world.

Today we looked to the past.  None of them could say with any degree of honesty that days past were good at home.  But like most of us, they were sentimental.  They miss old friends, football at dusk behind the mosque walls, the bounty to be had elbow deep in warm, festering trash – back when the trash  was elbow deep, in the good old days, the days before the sand.  Back when they knew a thousand escape routes from danger.  Back when the danger was calculable, known, like the local gangsters : they wouldn’t hurt you so bad if they knew your brother was due out of jail soon, if they knew your dad had a temper worse than their own.

Invisible Boys

They see things.  Things that grown men shouldn’t witness.  Because like so many of the people we work with, they are invisible.  They have no voice, at least not one that is paid any due attention.  Their witness testimony is not feared because it will never be sought, part of their armour, part of why they still breathe, despite the things they have seen.  They are invisible boys –at least to anyone who doesn’t know how to look.  It reminds me of those 3d pictures – the kind you need to squint in the just the right way in order to see the hidden image, but once you have the hang of it, you wonder how you ever missed what was right before you all along, if only you had relaxed your focus, let down your guard.

Don’t worry though, you weren’t being rude.  They weren’t trying to get your attention – the opposite is generally true.  Their own attention was elsewhere.  On the ground, in the bags of trash, in search of treasure.  They only put their hand out, requesting the treasure in the pockets of others, when all else has failed, when it is time to go Home. And when Home isn’t interested in their company, at least not unless the safe entry toll has been paid, they go back to where they were: the streets, sometimes for weeks at a time, in search of the elusive safe entry toll.  And maybe it’s best that you don’t see them.  Because you can’t turn it off after that: the hidden image in the 3d picure. and there are boys just like them all over this city, all over this country, all over the world.

My dream for these boys has always been for them to not have to scour the ground in search of the means for their next meal, for the approval of their parents based on how much they earned that day scavenging.  I want them to strut down streets, looking up and around at the goings on, admiring pretty girls, naming the make of the cool motorbike that just passed by, joking with their friends, wishing for regular things like a cool new pair of jeans or shoes.  Little boys shouldn’t have problems that include rental payments, empty bellies, finding a dry/safe spot to sleep when the daily income quota hasn’t been met.  They shouldn’t know about loan sharks, drug running, smoking ice, hiding from the re-education police, prostitution.

The dreams they have for themselves are similar but have a very different motivation.  One wants to be a bank manager – because his father lost his land to a bank that had no business approving a loan to him (based on income that his children earned scavenging?! Secured or not, that loan was criminal.) Another wants to be a police officer.  His two elder brothers are both serving lengthy sentences for violent offences.  The boy who wants to be a doctor has siblings that have suffered serious illnesses.  And the wannabe artist is an extremely talented artist, and it is the only thing his family tells him that he does well.  I like to think their motivation is a sense of justice, if they had control, things would be different, their lives wouldn’t be what they are, that they want better for their future kids.  But the simple truth is that they crave the approval of their parents so profoundly that it has bubbled to the surface through their future ambitions, when they dare to think ahead, past today, past dinner, past tonight.

Their parents aren’t the monsters that you might think I have suggested them to be.  At least not on the whole.  Although that is another tale. Please reserve your judgement,  for now.  It will make it easier to hear the truth later.

These boys are the beginning of the beginning.  The reason for everything.  I spent hundreds of afternoons looking out at the same space, my real life television, and from time to time they would flitter past, silently scouring the ground, the rubbish.  Not the noisy kids vying to sell you a postcard, a book, a scarf.  The silent ones were different.  They don’t complain they need money for English school.  They certainly don’t complain they need money to buy the meal they haven’t had for days.  Silently, quickly, they secret the edible trash straight into their hungry, soundless mouths, hoping the noisy kids didn’t see their shame.

But I saw their shame.  And nothing in my life has had a more profound effect on me.  Which is why they are the beginning, why I refer to them as my boys, they are the reason for everything.    So yet again, I will leave a story unfinished.  Because it is unfinished.  And it will remain so until I can say: “and they lived happily ever after.” There may be some chapters to get through in the meantime.  And they deserve so much more than a thousand words or so.

Joy, funny, ridiculous.

Joy : spending time with these remarkable, independent, funny, secretly irrespressable young / old souls.  Not many things make me happier.  If their giggles could be bottled and sold, their futures would be secure.  And the voices that they have should be heard at intense volume.  Because their stories speak volumes about the world we live in, and hopefully one day, those stories will begin with “Once upon a time,” because surely their stories couldn’t have possibly ever been true.  And then they all lived happily ever after.

Funny & Ridiculous.  Sorry.  I haven’t got either right now. I know too much to trivialize today.

Sidenote.  There are girls.  But I’m not talking about girls today.  And it’s not sexism on my part.  They have not been excluded.  I’ll get around to telling you about girls in due course.  It will make sense.

I have a theme song in my head for most things.  For these boys it is “Smells like teen spirit” by Nirvana.  If I ever take the time to learn how to use this medium more effectively, I will MAKE you listen to the theme songs that bounce around my brain as you read.  Until then, you will have to sing along on your own.  The louder the better: Load up on guns, bring your friends.  It’s fun to lose and to pretend….


The all too mortal child vampires of Phnom Penh.

Zombies vs Vampires.  Many people have a preference, nearly everyone has an opinion. I do not care for zombies and I shall speak of them no more. For me it’s always been vampires, or at least since I saw The Lost Boys as a young teenager. Corey Feldman (sigh.) And then Bram Stoker’s Dracula.  The horror, the love that transcends death, the secret desire that maybe the bad guy will win because he loved Mina so much (And let’s face it – Gary Oldman or Keanu Reeves?)…  Onto Buffy the Vampire Slayer.  Add some teen angst, a bit more sexy. And then True Blood.  Lots more sexy and set in The South.  Anne Rice’s marriage of the vampire myth with New Orleans should be lauded as genius.  Poppy Z Brite cemented their presence in that city with her insane novel “Lost Souls” so clearly to me that I was downright disappointed that I didn’t meet a chartreuse slurping, candy gobbling creature of the night lurking in Jackson Square when I visited a few years ago.  That city that was so familiar to me from reading those books countless times.  But there was another reason it felt familiar.  The balmy September nights, the silent, deadly strength of the chocolate brown Mississippi, the celebration of gastronomy, the French influence, the street chatter – nobody was a stranger and everyone told you to come on back soon now.  It reminded me of the faraway city I call home.  A little city with a big, brown, deadly river running round it.  Balmy evenings.  Life lived on the streets.  Where it’s just plain rude to not ask where you’re off to tonight?  Have you eaten rice yet?  But a city that has real vampires, not the kind you just find on the pages of a book.  And a real vampire is very different to the kind you find on paper.  The horror is very real, but not for the reasons the fiction would have you believe.

I know four little boys.  They are smaller than they should be because they haven’t grown how little boys should grow.  They are quieter than they should be because they haven’t got energy to spend on chatter.  When I met them, one of them had a very big scar across his belly that marked the place that his oversized spleen used to be.  When you peek under the lids of their little eyes, it is milky white instead of rosy red.  If you look closely you can see their little hearts beating through the skin on their little chests.  The rise and fall of their little chests is more laboured than it should be, as though they have to will their lungs to suck in air.  If you look closer still, into their eyes, some days you will see nothing looking back at you.  No spark, no recognition, no sadness, no joy.  Nothing at all in fact.  But take a step back and you will simply see a little boy who can only focus on the act of taking the next breath.  Maybe that is where the idea of soul-less comes from.  Those eyes.  They can be terrifying.  And they will keep you awake at night, afraid of what their emptiness might mean.

Image

Their deaths are documented on paper.  “The results of these blood tests are incompatible with life.”     Maybe there wasn’t meant to be a spark in those eyes, it said so on those pieces of paper.

And then there is the blood.  It is the key to their survival.  Any longer than three weeks and their organs start to crash, they become the husks I described above.  Two units of whole blood.  The fresher the better – the red cells last longer that way.    But a real vampire would never waste a commodity as difficult to come by as clean blood on their digestive systems.  Any method other than straight into the vein would render their life source useless.

The kryptonite of real vampires is a cruel joke.  It is iron.  Sunlight would be much easier to avoid.  According to the Kennedy method, the average iron content in the blood of a “normal” male is 52.5mg per 100ml.  One unit is 350ml therefore it is reasonable to conclude that it contains about  157.5mg of iron, a bit less if the donor was a woman.  This iron builds up around the vital organs, overloading them.  Particularly the heart.  SO the very thing that saves them, that nourishes them also destroys them.  In developed countries, an individual with Beta Thalassaemia major has a life expectancy of forty years or longer (depending on your information source) with the most common cause of death being heart complications caused by iron overload.  Mind you, this is in countries where iron chelation therapies are readily available.  Iron chelators flush iron out of the body.  Here in Cambodia, as in other developing countries, chelators are not readily available and relatively expensive.  Up to $1 per day for the cheapest variety.  Multiply that by four children and the grand total equals more than this family earns per day.  Faced with the expense, most parents have to accept that their children are temporary – something that no parent should have to face for what many consider to be small change.

I spent a lot of time trolling Thalassaemia forums from around the world, looking for a solution.  That was until a local medical professional informed me that was not where the answers lay.  Elsewhere, this is considered a manageable genetic disorder.  Here, it is a death sentence.

Are you horrified yet?  It gets worse.  So much worse.

A child with Beta Thalassaemia Major in Cambodia has a life expectancy of between 5 and 15 years.  Less than a child that is HIV+.

Of the studies that have been conducted, it is estimated that up to 48% of the population carry the gene that results in Thalassaemia.  Without the introduction of genetic screening and counselling, this problem is going to grow.

Very few doctors in the country are aware of the existence of this disorder and generally treat the anaemia that Thalassaemics present with iron supplements – increasing the overload on their organs, worsening their condition.

Thalassaemics are more susceptible to infection as their immune systems are compromised.  A thalassaemic child who contracts an infection or virus is far more likely to succumb to that illness than a non-thalassaemic child.  As this condition is rarely recognized, deaths that are actually due to the  underlying cause of thalassaemia are rarely recognized as such, undermining efforts to have research, medical training, genetic screening and public education conducted.

Donating blood is a culturally sensitive issue in Cambodia.  With the shortage of blood stocks, thalassaemics are mostly unable to access their requirements to maintain health.  Unless facing organ failure and close to death – thus being considered a medical emergency – they have to go without or find replacement donors.  And the replacement donor model is easily corrupted, in many instances giving a monetary value to blood resulting in a black market.

A good friend of mine told me I should write a horror story based on my outlandish vampire comparison.  Maybe I should.  Maybe I could make a tonne of cash and sort this mess out, fund the research and education programs required.  I feel a little guilty for this vampire bizzo.  Whilst in the forums I noticed a few people expressing their dislike for the comparison.  I mean them no disrespect.  Others didn’t mind, finding it a useful way to explain their conditions.  The last eight months have been a steep learning curve for me.  Trying to find medical experts that understand the local complications and hurdles; convincing all my friends to donate blood; convincing random tourists to donate blood; raising money for iron chelation; spending far too much time in a paediatric ward; becoming far too attached to four little boys;  getting involved with the National Blood Transfusion Centre and the Cambodian Thalassaemia Association.  So I hope Thalassameics will forgive my indiscretion.  I am simply trying to write a piece that people will read and share.  And hopefully some vampire fan out there has the answer for me, or a friend at the WHO that is looking for a new project to save thousands of lives.  Because we vampire fans should stick together.  Unless you like Twilight, in which case I have nothing positive to say to you.

Pre-warning:  This is only the beginning of this tale.  It’s actually barely an introduction.  But if I write too much, people miss the joy the funny and the ridiculous. SO:

The joy:  The people I have met who bust their ass for this disease are some of the most dedicated, professional, intelligent and compassionate people I have had the honor of meeting in my life.  It is humbling to count them as friends now.

The funny:  I have what is apparently known as shy veins.  Getting blood out of my is tricky and usually hurts a fair bit.  I kinda have a phobia about it.  So I shouldn’t take the piss out of people who get a bit dizzy after donating blood.  Because it is mean.  And I am awful.  And they are lovely.  But it is kinda funny.

The ridiculous:  Vampires.  Really?  Yes it is ridiculous.  You know it.  But still not as ridiculous as Twilight.  Sparkly diamond skin in the sunlight?  Really?  Hang your head in shame you panderer to the tween market…

And on an unrelated but related note:

Beta Thalassaemia Major.  Thalassemia if you are a fan of American spelling.  Personally, I like the aem in my blood words.  Heamoglobin.  Haemotology.  Anaemia.  I like the way that my Spellcheck underlines them in red.  I know it is trying to tell me to conform but I refuse.

***Photo credit : Conor Wall


Ms T.

Imagine living twelve years of your life in the shadows:  avoiding eye contact, keeping your head down, never speaking up – barely speaking at all, in fact, to anyone. Not because you had committed a crime and found yourself incarcerated or on the run.  But because of the way you looked. A genetic disorder you were born with that remained mainly invisible to the outside world until it cruelly revealed itself over your face, your body, your skin, as soft button- like tumors; hundreds and even thousands of them.     A genetic disorder that was unknown to the doctors and traditional healers you had consulted when you could afford to see one, the painful “treatments” they inflicted on you with no success, the inevitable suggestion that you deserve your condition because of misdeeds in previous lives: bad karma must be punished.  Whilst a lot of the insults are whispered, many are not.  Contagious is a word you hear every time you venture out into the world, as is karma – the bad variety.  And there is no subtlety in the hysterics of a child who glanced at your face.  Eventually you simply don’t go out anymore, unless you really have to.  Isolated, afraid, ashamed, completely alone.

“Ms T” arrived at our community centre during a busy lunchtime, more than thirty children were munching their way through soup and rice in the space between the morning and afternoon sessions of the school day.  She hesitated on her way in, when the hush fell.  She declined our offer to meet privately upstairs and sat down, flashing a nervous smile at the children.  Seeing no fuss and sensing no danger, they all turned back to their meals and endless chatter.

Ms T explained that she had started growing lumps all over her body at the age of eighteen, twelve years earlier.  She had seen numerous doctors but had never been told what her condition was.  Some had tried cutting them off but they continued to grow.  She had been told she was dying, that she should stay away from other people or she might infect others.

She moved to the city long after her siblings had left home and made lives of their own.  Her mother was old and frail and there was barely any income from their small rice plot.  Ms T found a job as a housekeeper (she referred to herself as a “Coolie.”)  She said her employer had taken pity on her and that is how she got the job that paid her $32.50 per month for cooking, cleaning and shopping.  She was extremely grateful for the opportunity and describes her employer as a kind woman, although they don’t speak much – mainly just shopping lists or instructions for cooking dinner.  Ms T sends her income to her mother every month, through the Chinese money changers at the market.  She visits her twice a year – to help plant the rice and then to help harvest the rice.  Her siblings are too busy to help.  They have families of their own now.

Requests for medical assistance are quite common at our community centre.  Dengue fever, HIV, pregnancy, random fevers, burns, broken bones.  We don’t offer medical treatment but we know where to access it for free or at low cost for most situations.   Covering the cost of medication, transport and meals is a hurdle that many face in accessing even free services and we bridge the gap when it’s needed.  For situations like this one you just have to do your best.  Diagnosis can be the biggest obstacle.  We asked her permission to take photos and forwarded them to a dermatologist in Australia.

The thing that struck me most about Ms T was her unfamiliarity with kindness, with conversation.   Several times she had requested to take a break, explaining that she wasn’t used to talking to people, she needed a moment to think.  I touched her back and she burst into tears.  Thinking I had hurt her, I apologised.  She told me that she wasn’t hurt, no-one had touched her in years.  She held my hand after that.  Tight.  Apart from her employer, she didn’t know anyone in the city.  In her home village, only her mother spoke to her.  Ms T was all alone in the world.  We agreed to meet again, hopefully with news of what her condition might be.

Neurofibromatosis.  Von Recklinghausen Disease. Two very foreign sounding names, big scary words.  However naming the nameless removes the power of the unknown.  It plots a new starting point.  There is comfort in understanding what lays ahead, even if it wasn’t what you had hoped beyond hope for.  And I hoped beyond hope Ms T would find some comfort.

Ms T’s hope had been for a cure.  But there isn’t one.

She had hoped to have her facial tumors removed.  But they will grow back.

And there is more.

Her tumors could be growing internally, harming her organs, damaging her spinal cord, her brain.

The problems she has had with her vision could be due to a tumor growing on her optic nerve.

And this is more than an all alone in the world woman should have to bear all on her own.

We needed to find a local specialist to confirm diagnosis and assess what lay ahead for Ms T. To explain the why and the what to expects. To reassure her that she hadn’t been a bad person in a past life. But now we were armed with two foreign sounding names, some big scary words.  So we had a starting point.  And we found a specialist.  A very special specialist whose specialty is not Neurofibromatosis otherwise known as von Recklinghausen disease, but a specialist nonetheless.

To be continued…