Indonesia

Elephant in the Rumah

I am kneeling over a ceramic mortar and pestal on a paisley prayer rug, 3 blue pills and 2 yellow staring up at me in my hesitation. My co-worker, a nurse, quickly reties her gilbab as she hurries to prepare the next 5 prescriptions for our mobile clinic patients, and instructs me to crush the pills and mix them into a bottle of pediatric cough syrup. The recipient of this medication stares at me with his enormous infant eyes, and his mother reties her baby-carrying batik cloth tightly around her shoulders.

In a new country, a new culture, and – especially – a new language, I have thus far maintained a personal policy resembling the scientific method: before all else, observe. Before launching into projects, suggestions, and actions, I want to be sure that I understand the situation from every angle. Although one month into work I still consider myself in the observation stage, this inevitable challenge arose. From one angle, I’m being asked to sub-in as a pharmacist, a job for which I am clearly not qualified, and have never closely observed before today. Should I politely decline the request?

The counter-angle shines through the translucent curtains of this guest-room-turned-clinic, as piercing rays of midday sun. Outside I see almost a hundred bodies congregated in the tiny front yard, waiting to be seen, waiting for the medical attention that poverty – and distance from a city – has continually denied them.

If I accept and somehow mess up the concoction, I risk wasting precious medicines, and having to start over. If I decline, I put our doctor back precious minutes and slow down our cycle of care that is literally saving lives.

My initial hesitation subsides, and instinct kicks in. I crunch up the pills, pour the silt gently onto a thin paper sheet, and funnel it into the syrup. I close the bottle and hand it to our nurse. Prescription finished. That was not rocket science.

I think back to the football field a few weeks ago, when I joined in my first game of ‘futsal (indoor football/soccer). I may be athletic and energetic, and love watching football, but I have not played in years, and have never played an indoor game, where there is a different set of rules and strategy. According to my policy, I should have sat the first few games out, and observed first to learn the rules.

And had I done so I would have few friends, a lame reputation, and far less knowledge of the rules of the game.

Though my concerns were justified when mixing meds, football illuminates the other end of the ‘research first’ spectrum: that you learn by playing, not by watching. Similarly, as each day passes, I realize I am learning more language from conversations than my late-night self-lessons. And even back at our mobile clinic, the mixing process had already been explained to me, and I would have done more harm by sitting it out.

What I thought was a laudable, disciplined personal policy was actually my failure to see a fuller spectrum. There is certainly value to looking before you leap: a healthy level of caution and protection from embarrassing – or worse, harmful – consequences on yourself or other people. But there is always an opportunity cost, which oftentimes is ignored in situations where the immediate cost of failure seems too intimidating.

I was reminded of such a situation this week when President Obama repealed the longstanding ban on allowing people living with HIV into America – a law that most people considered crazy and unfounded. At Keep a Child Alive we managed to work through this crazy policy and successfully invite our HIV + African peers to New York City – one trip in particular resulted in our teenage Rwandan patient raising $500,000 by performing on American Idol this year. Evidence enough that people with HIV are not a threat, Congress?

But in reality, the initial policy of banning entry was created at a time of immense fear and little knowledge. A time when the cost of failure – risking the lives of millions of citizens to a deadly disease – seemed too high to mess around. The existence of such an opportunity cost was a diplomatic elephant in the room.

Thankfully throughout the 1980s and 90s policy-makers realized that the policy was no longer scientifically founded – that HIV is not contagious and people living with HIV were not a threat to the general population. But the ban stood. And the longer the ban stood strong, the more harm it did by promoting an international image of people with HIV as threats, as enemies, as contagious. A ban intended to protect people outgrew it’s use and began the boomerang’s path, quite possibly exacerbating the spread of HIV by enforcing discrimination against people living with the virus.

Congress should have amended the policy long ago, but they did not see the fuller spectrum – that we could be learning more about this disease by lifting the ban; by ‘participating’ in the disease instead of trying to hide from it. We could have hosted international conferences on HIV, but America never has to date. We could have been a real leader and set an example for world governments to recognize HIV in it’s true form, not as a public health scare tactic. We could have played a major role in decreasing the negative effects of the AIDS pandemic, but we instead of learning as we played, we stalled.

***

In addition to reaching rural areas around Bandung to deliver basic healthcare services, I have also been working on a special project my co-workers asked me to lead in the office. Many of our clients have children who are living with HIV, and the elephant in the rumah (home) is “When do i tell my child s/he has HIV?”

Just like deciding when and how to let HIV positive people into the country, there is a trade-off. Do it now, and risk your child becoming angry, confused, and hurt. Wait until later and risk your child being exponentially hurt by the truth and the lie that was used to deliver it. I’ve been asked to help design a training program for our clients who are parents, and perhaps eventually elementary school teachers in Bandung, regarding the ‘big question’, and my first instinct is to start my research engines.

But first, I am kneeling on the office floor, showing my co-workers through some initial ideas I have prepared on my laptop. I assume a tone of authority on behalf of our small team — what we can offer in a training, ways in which we can help these parents, how we can clarify this very obvious and necessary step of explaining HIV to children. I assume we will do group brainstorming, to more fully research Indonesian culture, the local education system, the atmosphere of discrimination a child might face in this town.

As I suggest ideas, one co-worker – a single mother still finishing up her methadone treatment this year – keeps nodding her head. She pauses, her eyes imploring me to say something more. I am not sure what she seeks. Like any spontaneous Indonesian conversation, I still have to ask the other speaker to repeat, or slow-down, and here it seems I am missing something important to our intended training.

Only thirty seconds into a brief back-and-forth and a light bulb explodes in my head. Suddenly, I realize what I have missed in our meeting thus far. We are not just talking about our clients’ children. Her own 5 year-old has HIV, and she is literally asking me, in this moment, how she should tell her child he has the virus.

“I told him that he would turn into a monster if he didn’t take his supplements (read: ARVs),” she admitted with a nervous smile, and tears gathering in her eyes.

In a single moment this project transforms from professional to personal. My hand falls to pat her knee, and rather than decline a conversation in order to run to my laptop for research, we sit and talk through her feelings. Certainly I’ll research the psycho-social technicals as our project proceeds. But this moment is not rocket science.

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