Just a quick review - Hi, my name is Kacie. I live in a far-flung corner of Papua, Indonesia and although I am an American, I grew up around here too. My husband is a theology professor and we are missionaries, though I wrestle with that word and with many things about the evangelical church culture. Most recently, my daughter was diagnosed with leprosy, which you can read a bit more about here.
After the initial shock and overwhelm of facing the potential of a diagnosis of leprosy, the reality of what I quickly learned from our missionary doctor friend and from internet research helped us to calm and realize that this diagnosis might not actually turn our lives completely upside down. Actually it’s treatable, it’s treatable where we live (that’s the craziest thing, we don’t even have an ENT or dermatologist, but we have leprosy treatment!), and she will likely be totally healed after a year of treatment.
Now the journey is communicating with people. You can even see it in my last post, which I linked to above. I had just sent out our newsletter and was wrestling with how strange our lives are, how exotic and crazy we seen. It makes me feel so separate from people in the West. We thought about referring to it only as Hansen’s disease, because that is the medical name, and that would remove the stigma. But that also does not communicate the level of shock that we have processed as we got testing and a diagnosis, or the seriousness of the untreated disease.
The local doctors we have talked to have given such little reaction, such nonchalance, that I thought perhaps we are shocked because leprosy is no longer present in the West. Maybe here, where it is endemic (Indonesia has the third highest case load in the world), people just know about “kusta” the way they know about malaria and dengue fever. We live with those on the regular, and people in the West are shocked. Maybe Elly’s case of kusta would be a non-event to people, something to pray for but nothing unusual. The local clinic is treating many cases, they said, and when we went in to start Elly on medication the guy in charge of leprosy treatment was out checking kids at the local school.
But it turns out that it not well-known and it is a big deal. Most cases must be undiagnosed or hidden. I have only told a handful of people locally, but most are surprised and unaware that leprosy is present in our area. The hardest part of it right now is that we have unintentionally exposed some people in our community to leprosy. Leprosy hides, Elly was likely exposed around five years ago, and we don’t know when her case became active (the less advanced, the less contagious this thing is). What an evil thing, that those we love and are with the most are the most in danger from contagion of any type. I’m sure there’s a sermon in there somewhere.
Actually leprosy is hard to catch and most people are naturally immune, so only the closest of relationships are in any danger. It has been hard to tell my neighbor, whose son has been like our own, and see her processing shock and fear. It was hard to tell the woman who helps in our house, and who brings her daughter to play while she works. Our teammates, the ones who have transformed our lives here to one of stable and fulfilled community, all of their kids have been exposed. What if in five years one of them has a case of leprosy emerge? People we partner with and people we intentionally serve, wrestling with risk because of us. And, raw but true, we already have seen people avoid us once they know about our diagnosis.
I told my husband it reminds me of when I was new here and tipped over a motorcycle with my car, and came home weeping saying that I came here to help people not to hurt people! I feel responsible, I have put people at risk and I can’t fix it. The missionary doctor that is elsewhere in the world but has guided us through first identifying initial symptoms all the way to now helping us monitor side-effects of medication now heard these questions in my voice as I talked about prophylaxis. He is firm. “You cannot be responsible for a disease that is endemic in your community and that your family would not have been exposed to had you not come there. I feel strongly about this. Like with COVID, it is not fair or good to take on responsibility for the spread of a contagious disease in a community.”
I am grateful for him. I talked about it with my spiritual director. I am, by personality, a helper. When there is a problem I am there for people, I do what I can to support and to fix things. I went into fix-it mode with this whole leprosy thing, but I can’t fix past exposures. She asked me, if I were sitting and having this conversation with Jesus, what do I think He would say in return?
I am not from a background that is very charismatic at all, so these exercises are not easy for me, but I am certainly from a background that steeped me in Scripture, and the answer to her question was already there, instantly in my mind. Jesus did answer those questions about who is to carry the responsibility for disease. The disciples asked him about the man blind from birth in John 9. Whose responsibility was it? Neither his or his parents, Jesus said. But God’s work would be displayed in him.
How tender that is. It was a culture that blamed suffering on the invisible guilt of the sufferer, and Jesus overturned that. This culture is not dissimilar, and truly I don’t think any culture is far off. We look for something or someone to blame because we are afraid. But I am not to carry the guilt or responsibility. May we too know His healing, and may we see His work displayed. In the coming days I am going to be working to help educate our community about leprosy so that we can help catch cases early and keep people from being afraid, pushing them to seek treatment and to treat the sick with dignity. I hope that our story makes a difference, ultimately, in the lives of others here.
Oops, I forgot to go back and add in the link to my first post about my daughter's leprosy diagnosis. Here it is: https://thewellthoughtoutlife.substack.com/p/the-unbelievable-reality