Even – if not especially – when the familiarity of an Orthodox Church is far from my reach, my Sunday mornings somehow always achieve a religious elation. As I felt my hamstrings stretch up the foot-tall stairs of my two –tiered roof, my freshly scrubbed laundry in the bucket I clasped, I stopped to let the rest of my senses stretch for a moment as well. My vision scanned across the cloud-clad hilly expanse in the distance, before which laundry lines stretched below every red-tile rooftop in the surrounding neighborhood. Surrounded by waving rags and flags of various colors and patterns, an eerie crescendo of traditional wayang music wailed its way through my mind, carried by an unusually whimsical wind. Hollow drums sounded out between the rampant giggling of neighborhood kids, and gaggling of neighborhood geese.
My mind wandered to the zoo, where this past Friday our team of HIV/AIDS case workers launched a new program focusing on Home and Community-Based Care. The idea is, programs that focus only on immediate treatment of HIV infection are incomplete – because there are millions of people living with – not dying from – HIV in Indonesia, numbers that will continue to increase even if at a (hopefully) lower rate every year. “Living” is the key word here, not “suffering from” or “victims of” – as millions of people every day manage this chronic condition, and the world of need beyond simple biological treatments is as vast as my Sunday morning mountain range.
The HCBC program focuses on normalizing HIV, in the person’s immediate family environment and gradually within the community. Not only does this address the particular psycho-social needs of people living with HIV, especially those with families, but it functions to decrease stigma in the community, the absolute key to ending the AIDS pandemic.
And so Friday we all went to the zoo – trivial, on purpose. In fact once a month we will be having regular family activities like this, where parents can feel ‘normal’, doing activities with their HIV support group that have absolutely nothing to do with HIV. Children who don’t yet know their parents are positive will already have a close-knit community of people living with HIV so that another generation does not become prey to this disease, and yet another complicated issue is addressed with a beautifully common-sense solution.
As I hung up my pants, my towels, my socks to dry, I thought about this process of “normalizing” HIV, about why HIV still seems so exotic and untouchable to people not directly affected, and how much effort it will take to reach the goal of HIV as a household name – as much for promoting prevention as for treating someone living with HIV as you would anyone else.
A few minutes later, back in my room to grab another load, a heard a soft tap at my door, and I eagerly welcomed in Dwi*, one of the three female college students who are also boarding in this family’s home with me. Dwi presented me with a pronunciation predicament – shyly requesting me to demonstrate difference between ‘beach’ and ‘bitch’, and ‘sit’ and ‘shit’ – and then promptly, politely asked if there was anything she could do for me. I gazed about at piles of to-dos – health insurance reimbursement forms to fill out, unwritten postcards to write and mail, novels waiting to be consumed – searching for something that would make this more than a one-way exchange, as I’ve gotten in the habit of desiring.
My eyes fell to two essays still unread– autobiographical essays written by two of my coworkers that won World AIDS Day awards at the local hospital. Though my bahasa is improving and I can get the gist of most work-related writing, having a patient human being as a dictionary by my side is always a blessing. My intentions were, however, dual – both truly wanting to read and understand the pieces, but also eager to read the reaction of Dwi, a young, Muslim girl far more conservative than my co-workers.
Dwi didn’t hide her social surprise, but at the same time reveled her intellectual expertise as a pre-Med student, as we read through the life stories together, covering topics of stigma, drug use, sickness and suicide. Although we talk about my work from time to time, she had not realized that the people I hang out with, people she has met before because I have brought them to the house, are living with HIV, and have lived lives of relative struggle.
Realizing so many of my friends have HIV she promptly, politely, asked me as well, “Do you have HIV?” to which I responded a negative with the same smile and casual tone I used to say ‘yes’ for my coworkers. Our discussion twisted and turned, both deep and vast, from HIV to Indonesian and Muslim culture to national corruption. I learn that she is skeptical about the power of her generation to escape the culture of corruption entrenched in Indonesian government, as her peers are still focused only on what they can do for themselves and not also for others. I learn that this is true even despite the efforts of the National Corruption Eradication Commission (KPK) to hold education sessions in high schools nationwide about calling out corruption and preventing it in the future. I think about DARE (Drug Awareness Resistance Education) in my own elementary and middle school experiences, and see a parallel failure of top-down “told-you-so” interventions to make an impact on young people’s decision-making.
I learn that Dwi’s family, though they raised her to denounce corruption and maintain high moral standards, still considers HIV something “jangan dibahas” – not to be talked about. A biology student and compassionate soul, this bothers her, and she quickly becomes engrossed in much of the information I throw her way. An hour or so later, energized in particular to start researching more about Prevention of Mother to Child Transmission (PMTCT), Dwi practically bounds out of my room with a hearty farewell, “Selamat berjuang!” she says, celebrating the struggle we – perhaps a bigger “we” than she felt a part of prior to our conversation – have before us.
I look down again at the essays of my co-workers, and think about our various efforts – those that appear exceptional and those that disguise themselves as normal – and how much struggle they have all been through in order to stay alive.
My female co-worker concludes with a striking image, “Saya ingin sekali menjadi sebuah berlian cantik… sebongkah batu yang menjadi berharga setelah melalui beberapa proses yang sangat keras.”
Roughly translated, “I want very much to become a beautiful diamond, a piece of stone that becomes priceless only after going through a process that is incredibly difficult.”
“Selamat Berjuang, indeed”, I think, and run back up to the roof to hang another load of laundry.
*name changed to respect privacy