The thought of coming back to Jakarta during a break from studying overseas and doing absolutely nothing besides getting stuck in traffic trying to get to the malls or cafes seemed like a waste to me. Thankfully, I was fortunate to be able to volunteer my time at Rachel House, Indonesia’s first home-based pediatric palliative care service for children with serious and terminal illnesses, such as cancer and HIV.
My time was spent shadowing different nurses from the Rachel House team as they visited patients in their homes across Jakarta, Bekasi, Depok and Tangerang, providing home-based care to children living with serious and life-limiting illnesses, including the often forgotten psychological, emotional and spiritual support for the patients themselves and their carers.
Negotiating Jakarta
The first challenge was getting to the patient’s homes. We commuted by bus, motorbike, car, train or – most often – a combination of the above. Oftentimes it took hours to reach the patient’s homes as the terrible traffic slowed the journey down to a crawl. Even when we got to the right neighbourhood, it was hard to find patients homes – many of which are in densely packed urban settlements (known as kampung) that have no streets, let alone coordinates on Google Maps. Most of the patient’s homes are tiny – some measuring as little as 5 meters squared to house a family of five or more, and constructed out of scraps of metal, plastic, sheet and anything else that can be found. It was a world away from the glitz of Jakarta’s malls or University in the UK.
Once I entered a patient’s home, I was quickly exposed to the harsh reality of life, not only for the children that are living with serious and terminal illnesses, but for their (almost always) impoverished and marginalized families. Some days I would come home feeling absolutely drained and helpless, at the sheer unfairness of it all. I was also uncertain at the start about how I could be useful and not become a burden or just a spectator – what would be the best approach to help or to talk with these kids? But the more time I spent with the nurses at Rachel House, and with the children, the more I realised that I could be there to listen, to support or to simply just play with the children. While I couldn’t cure their illnesses, or provide medical care like the nurses at Rachel House – I could be their friend. Which is something that these kids often lacked, as their illnesses either confined them to their home or had so much stigma as to make friendships really hard.
The very last patient I visited was the most adorable 3-year-old little boy, who simply made my day and warmed my heart. I was welcomed with smiles and hugs by little Ibrahim (name changed) even though we’ve only just met. He ended up playing with my camera the whole time I was there, fascinated by both the camera and screen. Little Ibrahim’s photos were very good – he had a real talent for photos and I wish I could have stayed longer to teach him what little I knew about taking photos.
Big spirit during the hard times
Visiting children living with HIV and hearing their stories was the most eye-opening experience. I was previously unaware of how big a stigma exists around the illness, and how damaging this is for all concerned, as it forces the disease underground. It’s now become a goal of mine to tackle this stigma, by educating more people in Indonesia that although HIV is currently incurable, it is a treatable disease which does not easily spread to others.
Beyond this, having the opportunity to be welcomed into the homes of these children has redefined how I see the world. The profound strength shown by kids struggling with serious or life-limiting illnesses, but almost never giving in to anger or despair at their situation, is something I’m in awe of. They don’t let their health becomes the reason why they should stop living or at least, stops them from dreaming. I have also learned how much love, support, and communication can have a big impact, even on those living with serious or terminal illnesses.
The brief three weeks I spent volunteering at Rachel House have been most insightful and humbling moments. Grateful for the experience, thankful to be given the opportunity to learn and grow, and for the stories that were shared and heard. I’m also most grateful for all the laughs, hugs, and love that were seen, shown, and given by the children I have met.
It has been an honour and privilege to volunteer at Rachel House, and to be welcomed into the homes of those facing challenge after challenge; I will value this experience for a very long time. I can only hope that I have left at least a small-atom-sized impact on the nurses at Rachel House and with the patients. That they know they will always have a friend in me.
Cynthia Clara D Law is an Indonesian-British woman currently studying at Bangor University in the United Kingdom.
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