I started a Substack to process my regular life. The big concepts in the mundane of my daily reality. That subtitle, it should be the title, but it’s a terrible title. I deleted it. I told Isaac as I wrote our newsletter this week, how do I write this without it feeling like a really overly dramatic missionary story, a bad novel that’s too on the nose, a marketing ploy playing up the sob story. I hate that stuff. And yet there feels like no way to write my reality this week without it sounding like that. This is my reality. This week my daughter was diagnosed with leprosy. How crazy is that? I can’t write it well because I can hardly believe it myself.
We are now those people. Back in the US our church that we once had a small community that formed us, 8 years later hardly anyone knows us. We are anonymous and unimportant. But now the leadership will not forget us, we’ll always be that family that was overseas and their kid got leprosy. We’re crazy people. I don’t blame people for thinking that, it’s true. Our lives are crazy. I literally have known no one with leprosy. Well clearly I do, as my daughter got it and you can only get it from prolonged, close contact from someone with leprosy. But whoever it was was undiagnosed and so we don’t know who it was. I’ve never even heard a story of someone going overseas and catching leprosy.
From what I’ve been reading, one kind of leprosy takes 4-5 years from catching it to emerge. The other kind takes like 8 years. My daughter is 9. We moved overseas 8 years ago. Imagine if she caught it while we were in language school 8 years ago as a baby and we just now we find out? Turns out leprosy is endemic in our area, and the local clinic said there are plenty of cases in our neighborhood. But we didn’t know that, and most other people we’ve talked to don’t either.
What are the odds? Child cases of leprosy are relatively rare because it takes so long to emerge. Chances are you grow up before you actually have an active case. I read on the WHO website that Indonesia reports around 1,000 new childhood leprosy cases a year. Ya’ll, Indonesia has a population of around 70 million kids. Those are crazy odds. She can catch it from close contact only, and the people that have close, prolonged contact with her outside our family that are from here are… well.. I count four adults and three or four kids. She is my introvert, she is homeschooled, and also COVID isolation. What are the odds?? Someone said she should play the lottery. Indeed.
Here’s the thing. After several weeks of feeling like everyone was spinning out of control and at points things sounded … well… like our daughter might have leprosy, and all the terrible things that pop in the mind at the first sound of that…. this whole thing has turned out to be so manageable.
We were at the annual conference for our missionary team (I love our org, by the way, and love our team) and one guy is a doctor and he checked out two numb spots on my daughter’s leg that she identified a few weeks before. It was a weird symptom and yes I knew numbness is a symptom of leprosy but also thought, surely not. But our doctor friend told us we needed to get it checked out for leprosy and my heart just dropped.
But… it turned out that as our dear friends watched our kids, we managed to see a skin doctor and later get a skin biopsy, right there in the city where our conference was. A week later and back home, we got the results and despite how terrible it is, in 24 hours she was at our local community health clinic receiving a neat blister packet of WHO-funded free medication for leprosy. She’ll take it for a year, but turns out it’s usually handled really well by patient’s bodies, and after just three days she will no longer be transmitting the disease. Since her symptoms (even the ones that were present but we didn’t know were related) are generally unnoticeable and do not really affect her.
So, in reality, despite an unbelievable diagnosis that sort of strikes terror and we thought might upend our lives, after just a few weeks we are settling back into normalcy. My shoulders are starting to unknot. I have organized the chaos and put all these new medical files in a neat folder, ready to present to an unbelieving doctor in America when they ask for medical history.
There are still things to unpack. There’s a lot to unpack. There’s more journey to come, but it is likely to be more emotional and relational rather than medical (hopefully). Medically, it will be more pills, every night. Which is where I’ll end for now, closing this laptop and fetching tonight’s dose, carrying these miraculous products of medical science and God’s common grace that have changed this story from basically a death sentence to a three week dramatic interruption of regular life and a really crazy two truths and a lie that my daughter can use for the rest of her life.
Actually it’s more than that. But I’ll have to write it out to figure that all out over time. For now I still can hardly believe it and I’m also really thankful that the terrible reality is not as terrible as it seems.
So sorry to hear all you have been though, but Praise God it’s been easier than feared.