Help bring Palliative Care to Indonesia's children

I have asked myself the question “How do I want to die?” countless times in my life. Depending on how I feel at the time and at what stage of my life I am at, the answer often varies – from passing away peacefully at old age to dying heroically in a fire trying to save a kid. Of course, all this assumes I even have a choice in the matter. All too often, we don’t have a choice. Death comes quickly and takes us, and our loved ones away. But what’s worse is that sometimes death comes slowly and you’re dragged through the dying process painfully and slowly.

In the two months I’ve spent with Rachel House, I’ve come the closest face-to-face with death than ever before. It’s easy to write off death when you’re only 20, because you think- surely it’s not going to come soon! I still have so much more time! But the patients at Rachel House don’t even have the opportunity to reach 20 years of age before they are robbed of their lives forever. It’s infuriating and saddening.

The first patient I met was a tiny little baby boy named Andi. He was HIV positive. He was so tiny- “like a melon”, was how Prita (Rachel House’s Program Officer) described him. He was only 4 months old, and had the tiniest fingers and toes, and it just makes you marvel at how small a human being can be. Andi’s mother was only 18. She was two years younger than me, married and had a boy to call her child. She was also wholly unprepared to be a mother.

One of Rachel House’s nurses, Neng, interacted with Andi’s mother and grandmother in Bahasa Indonesia. We caught parts of the conversation, didn’t catch most of it, and largely settled for gazing at Andi and observing the body language of the people around us. Andi’s mother was also HIV positive. She had been taking medication for a while, but stopped recently because she felt fine. She had also ‘forgotten’ to bring Andi to the hospital for his checkup. Andi’s mother was a beauty; she had long black hair and big eyes. She fiddled with Andi’s cot and laughed a lot, not quite meeting Neng’s eyes most of the time. Andi’s grandmother carried little Andi in her arms and looked onto the conversation with a defeated air.

Many thoughts filled my head as we walked away from Andi’s house that day. Above all, I wondered- Is there someone who can be blamed for the situation? Andi did nothing to deserve all this pain and suffering aside from being born into this world; his mother may have made some bad decisions but ultimately, in her situation it must have seemed like she didn’t have any other options aside from getting pregnant and being married off. And I went away thinking, man, life can be really unfair sometimes to some people.

It is stories like these that make me realize just how much of a blessing Rachel House is to these families. Crucially, I think the nurses and staff at Rachel House see the suffering and go out of their way to alleviate it. They never stop at “Wow life is so unfair!” They go beyond and give their all in order to help one more child live the rest of his or her remaining days without pain. Andi passed away a few weeks later, suddenly and unexpectedly. We mourn his passing, but ultimately if his last days were lived painlessly and without any suffering, then that might really have been the best outcome for everyone involved.