Wednesday at Nyahuka Health Center brings HIV+ patients from out of the woodwork of Bubandi, Busaru, and Ndugutu sub-counties. Most of them live sort of invisibly, keeping a low profile, hiding from public places. Perhaps a hundred of these patients at various points along the HIV progression timeline shuffle in for “care and treatment.” “Care” is defined as the provision of antibiotic prophylaxis (cotrimoxazole) and treatment of opportunistic infection (plus or minus compassion), while the term “Treatment” is reserved to include the prescription of ARVs (anti-retroviral drugs, highly active three drug combinations).
Today I (Scott) shouldered the responsibility of seeing all those HIV+ patients who needed to see a doctor, either because they had a medical problem or because they needed their ARVs re-filled. If a patient wanted to take porridge provided by the Kwejuna Project, listen to the bible teaching, and get their cotrimoxazole refilled, they could do so without waiting to see the doctor.
After finishing with few obstetric ultrasounds, I sat down in the examination room and began the long process of seeing these extremely complicated patients. The spry, smiling Costa (nursing assistant) bounced in and said, “So, doctor, what will you be prescribing today?”
I responded, “The standard, I suppose: CombiPak - Zidovudine, Lamivudine, Nevirapine. Isn’t that the only combination we have?”
He cheerfully responded, “Well, actually, we don’t have any.”
“None?”
“Well, we do have enough for five patients (for one month each).”
Well, now I’m thinking five loaves. How ‘bout any fishes?
Without actually performing any miracles, Scott Will (a visiting Physician assistant) and I managed to see all the AIDS patients who needed Treatment. Every patient who needed ARVs did received them, but most only received a one week supply and some received combinations of drugs which were new to them. Not ideal medicine, by any stretch of the imagination. This means that instead of the usual one month return visit date, all these patients will be back next Wednesday, effectively doubling the size of the clinic next week. Umm, I think, I need to go to Kampala next week.
Why? Why is the drug supply like this? The supply chain has many links none of which are very strong. Responsibility can slip at the source (National Medical Stores), DELIVER (the logistics agency which handles the requisitions), the ARV Clinical Officer (who should send in a monthly request), or the Pharmacy Storekeeper (let’s not point fingers, but the temptation exists)...disorganization, inefficiency, ineptitude, apathy...any or all.
At least all of the thirty five or so patients who needed a refill of their ARVs received them. Not Mary. Mary is a 50 year old woman, skinny as a rail and patient as Job. Her CD4 count (the good white blood cells) is 48. Dangerously low. Normal is above 800. When you get below 200 it’s time to start the ARV therapy. Below 100, she is at high risk of life-threatening infections striking her at any time: meningitis, pneumonia, sepsis. As I examined her treatment card, I noticed that she has come to the clinic SIX TIMES since July 25th. Each time there is a handwritten message across the page: “Start ARVs when supplies will allow.” Each visit, the stock of drugs has been so low that only the minimum supply could be dispensed to those already started on the drugs. Not enough for any new patients to be added in. Maybe next time Mary.
The reason Dr. Jonah asked me to run the ARV clinic today is that he went (with two other staff) to a two-day training in Kyenjojo for “ARV logistics.” Learning how to manage the ARV clinic drug supplies.
So, there is hope that this situation can change.
Meanwhile, I have requested in my renewal proposal to the Elizabeth Glaser Pediatric AIDS Foundation for money to allow us to buy “back up stocks of ARVs.”
Until then, let’s pray for Mary and for this continent full of clinics with patients like her.
This morning Luke begins his O Level Exam Ordeal, with a Chemistry Lab practical exam. Students will be given unknown substances and with their lab equipment they must choose to run various tests to characterize the compound. He feels fairly confident, maybe his granddad's genes coming through, since he has spent scant time in the lab in his school career. This is the first of 19 half-day (2 1/2 hour) exams spread over the next month, up to November 15. He will be tested in 9 subjects over all that has been taught in four years: Math, Additional Math, Chemistry, Physics, Biology, English, Literature, Christian Religious Education, and Computer Studies. The first five he actually attended classes for; the second four he’s “crammed” in the last 6 months. Most subjects have two papers (exams), some have a third if there is a lab. The sciences have some multiple choice but most of the questions are long-hand, write-what-you-know type essays.
This month of exams determines the future of students in Uganda. They must pass highly enough to enter A-level (S5 and S6) studies, which are like late high school/junior college. From O to A level students narrow from 9 or 10 subjects to 3 or 4. Then their A level performance determines their entry to University (3 years for a bachelor’s degree; five years for medicine). The day to day, year to year, transcript has no bearing on their admission, it all boils down to these days of exams.
So you can pray for the school, for students to dredge up all they’ve learned, to not panic, to do their best. Pray for the district to resist corruption (cheating has been rampant in the past). Pray for Luke to strike the right balance between taking his studies seriously enough to learn, but not worrying over the exams. Pray for all of us to enter more fully into the lives of Ugandans through this experience, and for God to get glory.
Every exam ends with these words typed across the bottom, an appropriate epithet: THE STRUGGLE CONTINUES!
Letter to a Friend ( Marjorie Oludhe MacGoye )
Changing continents in midstream
Is likely to create mild upheaval:
There is no need to lament loudly, like a woman
Chasing a runaway sheep in a tight skirt.
Some of us, I admit,
Have a little pocket Jesus, like a jok
Under a stone to keep their bearings right
But this, my king-sized Lord, works differently.
He was not ashamed
Of being noticed, brown, hook-nosed, acclaimed
For the wrong reasons, for the same ridiculed,
Exposing us to scorn and certainty.
He made me tough,
White, tender-hearted, insensitive, able to
Survive brass models of the Eiffel Tower
and the Eurovision Song Contest.
. . . .
You must select
Gold from a continent, staggering under the weight
In a country where you do not know your friend's mother
Or his investment.
If you would take it
Easy, my brother, you would hear women weeping
Not only for being black, see freedom seized
Not only from being black, fear white drums beating.
There is exploring
And there is limiting, bearing forth and burying,
There is fear and there is being at home, and being
My sufficient self. Why should I be ashamed?
This excerpt if from a poem in Luke’s introduction to East African Poetry text, one of the few written by a transplanted mujungu, a European woman who marries into a Ugandan family. I like the boldness of it, claiming a king-sized Jesus not a guiding charm, calling on a Lord who was also ridiculed (mujungu mujungu how ah you????), asking to be made tough, white, and tender-hearted, selecting the gold from this continent to which we have jumped, to make a home.
Is it possible to have too many friends? On a Saturday morning I can feel that way, even though it is supposed to be a day of catching up or a slower pace, a day to organize marketing and make a week’s worth of granola. But today I wonder when the catching up will catch, because the day is already half over. Here is the truth. Before 8 a.m. I had been visited by: one of my worker’s wives who has chronic abdominal pain issues; the mother of Kabasunguzi Grace, whom I stopped to greet at her home last week, so now she was coming to tell me Kabasunguzi’s problems; a baby with meningomyelocele whom I had sponsored for surgical care wanting to return for follow-up; a Christ School teacher with his sick child, now a bright little Kindergartener, whom I’ve been caring for since she was born; a former student bringing Luke a fancy “wishing you well on exams” card who stayed for breakfast. By noon the visits included a nice long chat with Jonah about the depressing death rate on the Paediatric ward and corruption and work ethic and perseverance, a handful of team mates just being friendly or with some small issue or illness, a handicapped girl I sponsored long ago for a year at CSB who now was trying to start a soap business, Kabajungu Margaret reporting that she did not ever get to see the doctor last trip to Mulago and needed to go back Monday, another small friend needing condolence and lunch after the death of his grandfather meant he walked to Congo and back this week, another student whom I care for with a chronic medical problem and shoes that needed glue to hold back together. Every single one of these visits came from someone I know and care about, someone with whom I have relationship, someone whom I am genuinely happy to see and talk to and where appropriate help (there were a few others in there I’m not mentioning, like a one month old with the entire back of his scalp eaten away by an aggressive skin infection), these were all friends whom I would WANT to feel comfortable coming to see me. This is part of living in a community, of developing connection. But this community is a jungle, a place where winters do not limit growth, where flowers turn into trees and vines can strangle a house, a place of life ever increasing. After 14 years the complex web of relationship becomes ungainly, sometimes difficult to hold up. I know Jesus’ answer: escape to the mountaintop for all night prayer, for early morning refreshment. He was able to be present and genuine with his friends, not harried or hurried. I long for that, to give my children and husband the love they need, to cook healthy meals and maintain some order in the house, while still attending to those who come to see me. Saturdays I can either feel the amazing grace that we have so many friends, or feel desperate for amazing grace to speak kindly and listen attentively.
Is the effect of each additional Scott on the team a linear increase, or exponential? Scott tripled, or Scott to the third power? What are the chances of having a team with 3 of 5 adult males currently named Scott? Or that the only other American male family practice doctor we know working in Uganda (Southwest) is also named Scott? And the real question is, if you are reading this and your name is Scott, why aren’t you here yet?
We were shocked to receive a phone call this morning at the end of prayer meeting that Edith Adyeiri, the wife of Bagonza Wilson Apuuli and sister of Isingoma Edward, died suddenly, of bleeding while being taken to the hospital for emergency surgery. She was a young woman, I’m guessing late 30’s. Way back when, she taught at CSB just after it started, and then at St. Mary’s Simbia, while her husband Apuuli worked as an eye assistant in the WHM Eye Clinic. They took the brave and unusual step for a couple unable to have children of adopting an abandoned baby: their daughter Sandra. Edith and Apuuli have remained friends of many missionaries even after moving to Kampala years ago. Edith was a gentle, courageous, servant-hearted woman. I also found out this evening that my 88 year old Uncle Edwin died in Clarksburg, WVA, one of my dad’s remaining brothers. His health had been failing and he indicated he was ready for Heaven, but it still leaves the family in grief, and for my mom and others was a reminder of my dad’s death as they sat in the hospital with him over the weekend. Yesterday morning a child I had not treated before was carried onto the ward as we began to see patients, but when the parents unwrapped the blanket his mother began to wail. I quickly came over and confirmed that he was indeed dead, probably died on the way as he was being carried to the hospital from far away, too late. Nothing to do but to wrap up his body and mumble some words of sorrow to the father. These deaths catch us in our tracks, a reminder that this world is not as it should be, and at age 1, 38, or 88 . . . The wrongness of death still stabs.
Languages can also die, as poor and marginalized groups of people are dominated and assimilated. SIL missionaries and national co-workers have labored with us for more than a decade to codify Lubwisi, previously unwritten. Yes, the idea is to translate the Bible. But there are other effects as well. Lubwisi primers have been written and printed, to encourage reading in Lubwisi in schools. This week SIL has sent two people who are making recordings of Lubwisi songs, indigenous music. So today they set up microphones and a computer by the translation office (yes Pierces, in your yard . . . Take a deep breath when you see the pictures) to record traditional songs and dances associated with circumcision and celebration, as well as hymns from church, and even public health message type songs. The crowd could not be kept at bay in spite of our efforts, so that the recordings will have an authentic background of crying babies and whispering children, blustering guards and holiday-making hawkers. We watched a couple of groups perform, thankful for the SIL effort. It is hard to explain how important language is to group identity, and the validating effect of foreigners with equipment coming to specifically hear YOUR people.
I also biked out to another smaller health unit again today with Stephanie. The topic of the day: behaviour change. How do we as health workers in the community promote behaviours that promote life? She got the group into good discussion of beliefs, and the way that our beliefs determine our actions. I think with much of public health, it is key to realize that we the doctors and public health “experts” and they the mothers and fathers all want the same thing, we have the same goal, a healthy thriving child. If we can emphasize that and become partners then we can help people realize that certain behaviours which are harmful (cutting out baby teeth, for instance) will not bring the benefits they desire. Community level changes in belief and behaviour are time consuming, slow processes. I’m glad Stephanie is out there in the trenches! She does a great job with giving practical homework assignments so her health workers put their new ideas into immediate action. Our alliterative theme for the day: believe the benefit, bash the barriers, and begin today.
Meanwhile Pamela was in Bundibugyo teaching a select group of HIV positive mothers to be educators and promoters in their villages. Many other team mates were in the HIV clinic with us this morning, including JD taking some weights and Scott Will seeing a slew of patients when the normally assigned clinical officer did not show up. Ashley came up for a slurpee to distract her from her strep throat after missing the day of school. At CSB the candidates were prayed for at chapel, and I had my five boys (Luke, Richard in S4 and Basiime Godfrey in S6 whom we sponsor, and Luke’s two S4 friends on orphan scholarships from Fort Portal Kataramu and Nuuru) over for a final pre-exam dinner tonight, followed by frenetic speed UNO and yet another prayer for their sanity and health through the long month ahead. So from early prayer to late visitors, it was a full day of grief, friendship, dance, struggle, pushing back against harm and celebrating what is good.
Dear Praying Friends,
As usual, this plea comes with a sense of desperation, and a realization that I have failed to ask for the prayer that we know we need. Thankfully I do know that many people pray anyway! God put two verses on my heart this week:
So then, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath; for the wrath of man does not produce the righteousness of God. (James 1:19-20)
For my people have committed two evils: They have forsaken Me, the fountain of living waters, and hewn themselves cisterns—broken cisterns that can hold no water. (Jer2:13)
The connection is this: our God is a fountain, unpredictable, unquenchable, uncontrollable. I need to listen to Him and not use words, manipulation, anger, sheer force of will and effort to make this world work out the way I think it should, to take care of myself and my family and protect us, to fix the world into the form I prefer. This image of the water cistern is so vivid for us, because we have water tanks that are fed by a gravity flow system from a mountain stream. The Ngite is our source—powerful, sometimes destructive even, but never dry. We prefer the convenience though of a nice measurable amount of still water, horded, right by our house, under out control. But though I try to make sure I have enough, my shored up walls that are meant to contain the water sometimes leak and slowly are empty. This is a leaky time. There is a lot going on, and I want to patch the leaks and be sure the water is enough. I’ve been quick to anger over frustrating situations, and quick to tears. Please pray for us to instead turn to the Source in faith, real faith, the kind of faith that listens and trusts and does not despair.
Here are some specifics:
Malaria. Malaria kills more Africans than AIDS by far. The rains this year never let up. The mosquitoes are abundant. The pediatric ward’s 25 beds are full and overflowing, 38 inpatients when I left yesterday, many mats on the floor, a number with very high malaria parasite counts and severe anemia. As soon as I got home I got a call from Amina, the secretary of Christ School, to come and get her, I’ve been treating her for malaria for the last two days and she felt worse. While she was lying on my couch trying to keep some popcorn and soda down, Pat arrived with Pauline, one of the three agriculture/veterinary extension workers hired by our nutrition program, looking extremely ill, shaking with chills and fever. She also had malaria, a bad case, made worse by the fact that she grew up in a less endemic area of Uganda, and by the fact that her initial blood smear a week ago was negative so it has been building for days. Amy, Savannah, and I have all had it in the last month too, though for years our team was almost never affected. Pray for relief, for good treatment, for adequate supplies of medicine and blood. Pray for our health center staff to have patience and stamina with their hard work load. Pray for Pauline, Amina, and others to recover.
Kwejuna. Just when it seemed this project was going to wrap up and be fully in the hands of the district . . . The Elizabeth Glaser Foundation asked Scott to write a new grant to expand services on the ARV Treatment side of things over the next two years. He’s spent hours and hours this week on a formulating a budget and new proposal. Meanwhile Pamela, and Pat, are helping host two major training seminars for staff this month and one next month. New families are diagnosed every week, children start on life-extending treatments, Stephanie labors to get them nutritionally boosted to improve their immunity, we facilitate support groups and people hear the gospel. Good stuff, a lot of work, we all need prayer.
Christ School. The Pierces are faithfully presenting the vision of the school and the needs in America this Fall, and we have a proposal in to a potential donor for serious funding. But the school continues to run at a deficit, trying to stay affordable to the poor. As the school year draws to a close, pray for adequate funds to pay teachers and feed students. And do pray for the major exam period. O-level students (Senior 4), including Luke, sit for about twenty half-day exam papers from mid October to mid November. Then A level students (senior six) take their finals, about a dozen half-day papers, in the second half of November to early December. We have students in both groups. A CSB teacher has again been selected by the district to monitor and coordinate exams for all participating test centers. Pray for fairness, protection from corruption, and for the students to do their best.
CHURCH. Rick had an invitation last week to train lay leaders in the major protestant denomination (Anglican) here, the Church of Uganda. He’s thankful for the open door, and the building trust. Please keep praying for authentic indigenous worship. SIL is sending two people next week to record Lubwisi music. A church in Bundibugyo town just launched a singing group. Pray for the Spirit to move creatively and passionately here!
TEAM. Ashley and Sarah are already so much a part of team life it feels like they’ve been here a year instead of a month! Praise God that Scott Will, a Physician Assistant who interned here before, arrived this week for another two months. He’s an example of God responding in His own way to issue number 1—we need the help!! And he was a specific answer to prayer for a room mate for Scott Ickes, left alone after the departure of summer interns. Another PA named Rachel Locker will also join us for a 3 week internship in October. Meanwhile the Pierces could use prayer for resolution of nagging health issues and God’s provision for the school in order to get them back here to Uganda soon. And the biggest news of the week: the WHM board approved Sudan as a new field and the Massos as the team leaders. The Masso family is in the US for at least a few months, and will be staging their entry to Sudan after they return to Bundibugyo in 2008. We trust God the powerful fountain who has chosen to use our team to launch this new field, but I confess I’d rather hew as cistern right here and keep the Massos (and others who are pursuing joining them) close by. God’s moving here is bittersweet, and our joy in seeing Him make this happen is mixed with grief over the personal losses to our community. So prayer for us to have faith and perseverance in the midst of transition will be an ongoing theme for the next year, perhaps forever!
Leadership. Would you please pray specifically for me, and for Scott, to be leaders who listen to the Lord and to our team mates, who speak slowly and with grace, who wait for God’s work to produce the “setting this world to rights” actions that we long to see.
Thanks for your partnership in prayer.
With gratefulness, for the whole team,
Jennifer
Julia’s Bday was a Redwall Abby feast, based on a serises of books our kids love by Brian Jaques. Our game team members willingly entering into the imaginary world of the medieval abbey populated by animals, entertained by riddles, quests, poetry and most importantly the FEAST. Scott and Pat made large Bundibugyo batches of “spicy hot root soup” (a specialty of the otters, I’m told) to go with Scotticus’ scones, and Wendy even went on line to find a recipe for “pasties”. Sweet meadow cream was provided by our cow in the form of two large batches of ice cream. Joe and Ivan even wrote special original poems, and Jack spent hours drawing about 20 pictures of various Redwall characters for putting on people’s backs so they could guess who they were. Ashley spent most of the day helping with the kids. In short it was a whole-team effort to celebrate with Julia. And I needed it, because when the spectacular sun dimmed and then an ominous storm blew in, swirling shades of gray clouds and driving rain which persisted in a depressing drizzle, it was pretty chaotic. We had 37 people hanging out, which is really only possible in our life if the party is mainly outdoors. It was probably a pretty unusual 11 year old birthday mix of adults and kids from 7 countries . . . It happened to be the day that a plane of visitors came from MAF to tour our mission and spend the night, and we’ve recently had a young German international exchange student joining us for some team events (he was assigned to a local family, which has been challenging for him to say the least), plus a half dozen or so Bundibugyo friends Julia wanted to invite. Julia enjoyed herself and sensed our love, which I can now put into perspective were the essential elements of the evening, in spite of my discouragement over the rain. I suppose it rained on festivals in medieval times too, and they probably had a much less entitled and demanding expectation of God’s favors than I do.
Here she is, the birthday girl, adorned in the contents of a package from Grammy! Thanks! She is truly a precious jewel, God’s good gift.
My verse of the week, maybe of the year: be swift to hear, slow to speak, and slow to wrath (James 1:19). How? By leaning on the righteousness of God at work in this world, not having to fix it myself. Here are some glimpses of a few things set right. Makuni went home today. He was hospitalized for two months, and slowly but surely a little boy emerged from the swollen scabby pile of pitifulness that I found sitting on his dad’s lap on the floor the first day. He smiled at the piece of candy he unwrapped and bounced his green ball from Pamela while we sorted out his TB therapy and vitamins and supplemental milk for going back to Congo (see the before and after pictures above). Here is another: Kabajungu Margaret after 8 courses of chemotherapy, wholesome and smiling, and we hope cancer-free (yet to be seen). And yet one more: Asta, a baby with malaria parasites too numerous to count, nearly dead from anemia, her articulate father pressing me to do something and my heart plunging towards wrath at the whole tottering medical system (both Nyahuka and Bundibugyo Blood Banks empty, and the man in Fort Portal telling me he could not send any for two days). Then we broke Uganda government policy and collected blood from her mother and transfused her. Today she is much better. Little steps towards putting the world right. I’m grateful for the resources (milk, transport money, malaria medicine, the blood typing and anticoagulant bag) all made possible by sacrificial giving. Thankful that many others are swift to listen to the needs of children in Africa, and swift to respond. But I need prayer, feeling the edginess of grief so close to the surface, feeling the wrath rising up so quickly, these small battles turning on so slim a margin. Prayer to be a listener and a lover.
