I’ve been worried a lot this week. Last week half the family passed around a cold, just the kind of cold we as a family get way too often when we are in Papua but is just normal. But, how will a child on multi-drug therapy for leprosy handle a common cold? I watched her nervously. She recovered, I think, but then swollen glands in her armpit emerged (or maybe that’s not what it is?), and for days she was in pain. One day she was lethargic, napped hard on the couch, woke up dizzy and fussy. One day she had shooting pain in her leg, a leg where there is also a large numb leprosy spot. We found two new spots on her arms, perhaps just not noticed before, perhaps new? And the virus left her coughing, which worsens as the days go by. Each symptom has me so worried, and then it passes. Days when the symptoms combined had me beyond worry and into fear.
We are supposed to keep an eye out for a leprosy reaction. That is when as her body begins to heal it begins to sense the leprosy bacteria (even if the bacteria is already dead because of the meds she’s been taking, the dead bacteria are still physically in these spots), and attack them. It goes into overdrive and the nerves spin out of control. Unchecked, a “leprosy reaction” can cause permanent nerve damage. We were told it would be okay to stay here in Papua while receiving treatment for leprosy, but told that if she had a leprosy reaction we’d probably want that supervised by an experienced doctor.
But where do we go to see an experienced doctor? We’ve been put in touch with so many people that have treated leprosy, such amazing people. But that generation of people is retired and moved away. With the MDT treatment effectively treating the entire world’s leprosy population, it’s only active new cases that need treatment, and then after a year or maybe two, it’s done. And so the WHO and leprosy missions worked to hand over treatment so that it would be integrated into community healthcare systems, exactly as we experience here.
Usually when an expat gets something dramatic, the expat privilege card gets pulled. It isn’t fair but it is true and generally it would be foolish to not access quality care when you do actually have access to it. There are medical evacuations, there are fancy private hospitals in the big cities that only the rich or those with insurance can afford. Or you just fly back to your passport country. But in this case, America’s doctors are not experts in leprosy. The private hospitals in Indonesia do not have experience. This is not a disease of the rich. The only experienced doctors are those who work at large public hospitals, the ones that work in Indonesia’s national health referral system.
Elly is fine, I think. But this week was scarier than the previous ones. Watching symptoms, unsure if they are bad are good. Wondering what we’d do if a leprosy reaction emerges. Not wanting to overreact but “what are the odds that the worst will happen?” is not a good question to ask when the child has just been diagnosed with leprosy, which basically was the worst and extremely unlikely thing that could happen of all the options on the table. The nurse who treated thousands of leprosy patients in our city told me to be sure they add Elly’s new spots to her chart – what chart? No one else made a chart. It’s all on me. I am a completely medically uneducated mother that is now her nurse, doctor, and infectious disease expert. I read papers on leprosy, take WHO informational courses, I print out educational materials to pass out in the community, and yes I add it to her chart, the one I made.
If I were in America and my kid had a cough or a swollen spot in their armpit I’d take her to the doctor and they’d tell me whether or not to worry. And maybe they’d be wrong, or maybe they’d way overreact because leprosy is rare and scary there. So it’s not that I’m wishing for that situation. But in this case it’s me that has to decide whether or not to worry. The appropriate worry level is in my hands. Worry is not always bad, it is God’s gift to help us sense danger and shift appropriately. It was worry that led to Elly’s diagnosis and the ability to be treated. So to worry, pray, and look for answers is exactly my calling right now. It is the role God has given me to play as Elly’s mom and her medical caretaker at this moment. But man that’s quite a bit of stress to carry, feeling responsibility for a rare infectious disease.
There is a balance to be had. I have a responsibility, but I am also called to rest. To sit back and say that this IS a really big thing, with risk. So we do our very best, and then recognize that God has a plan bigger than my limited perspective. He calls, “Come to me, all you who are weary and burdened.” I don’t know how He will write the end of this story. But He is good. I can trust Elly to Him. Even in the midst of it He gives me rest. And it is through these hard things that He forms us, and we are matured, strengthened, made wise, given compassion. He is not a God set apart from our suffering. He has entered into it, He is with us, and it is the hope of His redemption of all things that brings me a deeper level of peace. “In this world you will have trouble. But take heart, I have overcome the world!”
I am super thankful for the three doctors that answered my worried questions via email overnight this week. It helped me to know that it was okay, we did not need to book a plane to Jakarta to mitigate an emergency. As I wrap up this post it’s a week later, and Elly is fine. She is beside me as I write, asleep with her arm slipped into mine. She rests and is unconcerned about this whole leprosy thing because she knows her mom is taking care of it. And I, as a child of a good Father, can rest as well.