Lament, Hope, God’s Sovereignty, and Nodding Disease

"The laments are refusals to settle for the way things are. They are acts of relentless hope that believes no situation falls outside Yahweh's capacity for transformation."~ Walter Brueggemann

"Lament relies on God's sovereignty and not our ability." ~ Soong Chan Rah

I have been praying a lot about lament, hope, and the sovereignty of God over the last week as I prepare to start a research project on nodding disease.  I will be focusing on the cultural perceptions of the disease, but I have also added several of Scott and Heidi’s medical questions to the study.  As a grad student, I spent a large part of the last year doing research, but this time instead of sitting in a library reading scholarly articles, I will be sitting with families who have been affected by this horrific disease.

Let me start by telling you what little is known about nodding disease.  It is found only in parts of South Sudan, northern Uganda, and Tanzania, but Mundri town is one of the locations with the highest density of nodding disease cases.  It primarily affects children between the ages of 5 and 15.  The disease is named after the characteristic head nodding that occurs when the child is presented with food and they are unable to stay awake to eat the food.  This leads to malnutrition and wasting.  The disease is also characterized by seizures, and anti-seizure medications are often prescribed but have little effect. Some patients who claim to have nodding disease actually have epilepsy or another seizure disorder, but nodding disease patients often have a distinct child-like appearance, a protruding upper lip, and significant mental decline.  In most cases, the children were completely normal in appearance and mental capacity prior to the onset of nodding disease symptoms.  There is no known cure and researchers do not know the cause of the disease.  Some believe it has a genetic component; others link it to river blindness.  There is a lot that is not yet understood about nodding disease.

It is easy to share this basic clinical information about nodding disease, but much harder to share the reality of how nodding disease affects families.   Children develop sores on their legs from the chains that are used to tie them to trees so they don’t wander into the river and drown or burn themselves in the fire.  Families are ostracized from the community because of the stigma related to the disease.

And I am not talking about a handful of children and families.  It is believed that there are at least 300 children with nodding disease in the greater Mundri area.

These families have interacted with several researchers in the past who with good intentions have left people feeling like objects to be studied.  Researchers come in on an airplane, information is gathered, blood samples are taken, and then the researchers leave the same way they arrived.  The results of the research do not often make it back to the families being studied.  But the body of research on nodding disease is growing, and that is a good thing.  Doing medical research through translators in a rural part of East Africa is complicated to say the least.  And thank you, Heidi, for helping me refine my perspective on nodding disease research! One reason why it is good to have teammates. =)

So now that I have shared that information with you, I ask that you would join me in prayer.  Pray my actions and words would reflect my belief that each child with nodding disease is made in the image of God. Pray that I would be able to enter into each family’s grief with both lament for the reality of nodding disease and hope of future glory.  Pray that I would enter into the lives of families affected by nodding disease in a way that loves, hopes, laments, affirms dignity.

In God’s perfect timing, our team’s bible study last week focused on the sovereignty of God, and this week in particular I am thankful for the book of Job and for Joseph who said “As for you, you meant evil against me, but God meant it for good” Genesis 50:20.

Satan meant nodding disease for evil, but God meant it for good.  I have no idea why or how that gives God glory.  I will probably never know.  But even though my finite human self may not understand the workings of an infinite God, I still trust that it is true.

I am also thankful for Psalm 88 which cries out to God in prayer, questions, laments, and is an act of worship, but does not turn to praise like the many of the other psalms, because some days lament is all I can manage.

So as I prepare to interview families who have been affected by nodding disease, I am very seriously asking that you would join me in prayer.