This is Kabugho, whose big searching eyes have reached my heart this week. I should see some reproach in them because I had pretty much given up on her, but instead I see the calm non-judgmental interest of a six month old. I first met Kabugho a few months ago when I heard that the staff wanted to use baby formula for someone whose mother was admitted on the female ward. We promote breast feeding, so I was wary of the request, and feeling protective of our supplies for nutrition I marched over to check out this story of a mother too sick to breast feed . . . And found this woman dying. Literally, she died while I stood there. It was pretty upsetting, she was a young mother, with TB and AIDS, and I had come to insist that she breastfeed her child only to watch her gasp her last breath. Her own mother had struggled alone to care for her, and kind relatives of other patients held the hungry baby while the staff wrapped up the body. I quickly supplied two cans of formula and told them to return when they finished burying, to get set up with a dairy goat from the Matiti project, and to start following the baby for treatment. Since then she had been seen a few times by various staff but sort of fell through the cracks until Costa, advocating for her, calmly said to me last week that he did not know what to do with this patient. I looked up to see the frail grandmother and the tiny baby, less than 8 pounds at age six months, deathly ill, gasping, bloodless eyes and peeling skin. I rushed them to the lab where her hemoglobin was 3.2 mg/dl, a value not compatible with many more hours of life. Her grandmother insisted that she had nothing with her, had come alone, and could not stay. I stood there with the staff trying to convince her to be admitted at first. But I looked at the baby and the grandmother and thought of the pain and loss she had already experienced, and how much worse it is culturally to die in the hospital than at home, and how marginal her chances were . . . And told her that if she really wanted to go she could. Thankfully she changed her mind and stayed. I did not expect her to live 24 hours. Now a week later she’s looking at me with those big eyes. Blood tranfusions, malaria medicine, antibiotics, skin creams, milk, TB therapy, some funds slipped into the grandmother’s hands for her own food . . . And the little life that was slipping away has returned. She’s going home soon, and though I don’t know how long she’ll live, I’m grateful for the lesson to not give up, to value the love the grandmother had for this child, to gaze into her patient little eyes and try.
The ART clinic today was full of stories, including a happy mother who showed me her baby’s negative test results, several fat little newborns whose status is still unknown, others waiting for medicine refills. But my other favorite patient of the day is a little boy who may be 5 or may be 7, they’ve told me both ages at different times. His mother died, and his uncle who is in charge rarely manages to come to clinic with him, so he is basically being cared for by his 12 year old brother. The two of them shyly stand in my exam room, silent, in tattered shirts, the younger barefoot and the older in mud-splattered school shoes and uniform. I offer them both candy which brings big smiles. No matter what I ask they nod and agree and rarely speak. It is nearly impossible to know how well his medicines are given at home. But today I got the results of his CD4 count back: in less than a year his absolute CD4 count has doubled and the percentage nearly tripled. So the two little boys must be doing something right. I pat them on the head and refill the prescription, praying he’ll keep improving.
Grammy ended up with titanium rods in her back and the anticipation of a more difficult recovery, so we would appreciate prayers for her! Jack set up a count-down widget on the computer screen desk top, so we know she has exactly 55 days to be well enough to land in Uganda.
Luke survived what may have been one of his toughest days. Can you describe the reaction when copper sulfate is heated, including the color of the compounds and the chemical formulas? Or could you write an essay on the healing of Jairus’ daughter in the Gospel of Luke and its relevance to Christians today, worth 25 points? The struggle continues . . . .Biology tomorrow.
Feeling thankful for small, and not so small, things tonight. A few hours of sunshine after days of rain. The smooth brown convexity of home made bread. Sending two malnourished patients home because they were so much better (even though their beds were filled within the hour by two new desperate kids). The arrival of 11 propane tanks for the team—about half the the team households had ceased to be able to cook, or refrigerate, which puts some stress on health and happiness. Introducing Jack and Julia to basic algebra in their homework, and having their frustration turn to interest. Our faithful old dog Angie wagging her tail and eating after a morning of chills and lethargy . . .
To end the day, a quote from another poem, called EVENING:
But on a hill among musizi trees
Sweet nuns sing the litanies
Of that virgin whose Son we know.
Priests like lamp posts in a graveyard
Stoop over the breviary.
There’s a piping of crickets in the bush
And a bellowing of frogs--
All sing the ancient elegy
For the sun has died in the west. (Lubega)
First, my mom just went into the operating theatre for back surgery, and here we are thousands of miles away. That is very hard. My sister is faithfully caring for her as well as friends from church. We are praying that this procedure will relieve the severe pain she has been experiencing, and enable her to come to Uganda for Christmas!
Second, Luke continues to slog on through exams, today was Physics. He thought it was pretty hard, though the topics had been generally addressed many questions contained specifics (describe an experiment that demonstrates the reversibility property of light) that he had not previously seen . . . He’s generally having a good attitude but restless, and the sheer volume of exams and material weighs on him. And therefore on all of us. Tomorrow Chemistry (Theory paper 2, essay) and Christian Religious Education (Gospel of Luke).
Thirdly, Scott went to Kampala for much needed medicine, groceries, and a meeting about the new EGPAF grant. So we are missing him here, in the incessant rain and dragging sicknesses that are passing through the team, and particularly with exam stress upon us.
Lastly, Masika looked slightly better today, don’t give up praying for her. I hope to post some pictures soon.
Rose died on Wednesday evening, the 15 month old baby of JD and Kevin’s houseworker, and our near neighbor, Jowasi. I had found them admitted already on Wednesday morning on the Paeds ward, mother and baby sleeping on a mattress on the over-crowded (!) floor, one of almost 40 kids needing attention. And I failed Rose, failed not notice how sick she was becoming throughout that chaotic day. After seeing all the patients, running home to feed Luke lunch between two exams, and meanwhile greet a delegation from Catholic Relief Services touring the country, then running back to see the HIV positive kids in the clinic, I checked on her. No malaria parasites on her smear, a hemoglobin that was anemic but not a critical value. He mom said she was breast feeding; I declined to order them a Quinine drip given the lab results and decided to keep her overnight on oral medications with an anticipated discharge the next day. It was mid-afternoon, and I left, much more concerned about two other children who seemed objectively much sicker, than about her. So when I heard from friends early the next morning that she had died, I was shocked. Evidently about 6 pm that evening she had begun to deteriorate, probably more anemic than I realized, and she died in the hospital. I went to their home to find the women shuffling quietly single file, weeping, to the nearby compound of Jowasi’s clan, where they would bury that day.
There is no glossing over death in this place. I suppose I usually move on with the assurance that we did all we could, or the convenience that the family whisks away the dead body during the night so I only find the empty place. This time I could not do either. After finishing at the hospital on Thursday I accompanied JD back to the place of the burial. We sat outside in the drizzling rain, clustered with other women around the mud and wattle house where Rose’s body lay. A few sang hymns and beat a drum until the freshly dug grave was complete. Neglected children tried to amuse themselves, or huddled under the dried banana leaf shelter of the kitchen shack. Oblivious duck families waddled about as rain collected into puddles. Even as Bundibugyo homes go, this was a pretty bleak scene, unswept dirt and leaning shelters, scraggly livestock and runny-nosed toddlers. Then we listened as a local elder and a family member took turns recounting the events of her short life and death. In this place, and in this clan in particular, accusations will arise. Who bewitched them? Whose jealousy was aroused by Jowasi’s job with the mission, by his two wives, his 8 plump children? Whose fault that there was a quarrel in the marriage, and the sickness began while Rose and her mother were staying away from home, sulking back at the in-laws?
When the short coffin, covered in bright purple cloth, was lowered into the hole Rose’s mother threw herself into the loose dirt at the brink of the hole, crying out “they have taken my child” until she was carried away by other women, the grave dirt on her face and clothes, while men shoveled the clods of soil with the thump of finality onto the hollow box. Her father sat forlorn, some distance back. We walked away, heavy-hearted, to team meeting and James 2, Abraham and Isaac. I struggle with that passage. God clearly judges against the nations that sacrifice their children to Molech, that burn their babies, something He hates, the prophet Jeremiah rants on and on against the idea of gaining advantage by sacrificing a child. Yet in this story Abraham ties Isaac and puts him on the altar, then raises the knife, and this is pointed to as true faith in James. Testing, the purification by fire of a precious metal. After 14 years I’m still crying out for that kind of faith. If it were my child in that box, not Rose, would I believe God’s goodness? And even if (I sincerely hope) I never face that test, can I keep on with the more subtle daily sacrifices that living here entails for my kids?
The rain drizzles on, and I pray that my faith will lean on Jesus, the ram in the thicket, the child whom our Father in Heaven watched die, in our place and my kids’ place. And Rose’s place, so that she could rise from that mud-splattered purple coffin and run into the arms of her Lord.
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.
