In the midst of sadness, we still have some ka-celebrations. Ka is the Lubwisi prefix for small, and though my heart is heavy on many fronts I will allow it to sing out on a few others. Today Masika went home. Many people have prayed for her. She was admitted on the first day of October and discharged on the last day of October, and in that month she slowly but steadily transformed from a skeletal, barely alive, 6.4 kg little pitiful being, with open sores and peeling skin, to an alert, smooth-skinned brown little girl who could stand and hold a doll and even, today, smile. Mid-month I took her a Raggedy Andy from my kids’ stash, and it rarely left her side. The first week her mother seemed to barely touch her, as if she were withdrawing from this child who would almost certainly die. So her mother’s broad smile and tender holding of Masika today was almost as much worth celebrating as Masika’s improvement.
Then there is Mumbere, one of my favorite HIV positive children, who has grown 7 cm longer since the last time I measured him. His tiny little grandmother who brings him for care on her back complains of neck pain—no wonder, he’s growing on his ARV’s. A ka-celebration. And there is another dear patient of ours, Annelise! I heard her voice briefly tonight before my phone ran out of airtime . . .she sounded weak but herself, somehow a relief after major surgery on her neck, to know that she is still she, her own self and own voice. Another celebration, that her troublesome thyroid was removed by careful surgeons in just the right timing, and she’s recovering in America.
And then there is the help that God sent my way. I somehow thought I’d take it a bit easier from mid-October to mid-November, sort of focus on my family, on good meals and early bedtimes and scheduled study habits as Luke progressed through exams. Instead it has been an intense period of both team distress and severe malaria/anemia/overcrowded wards/staff shortage/lack of medicines at the hospital. . . All the things that make work stressful. The main nurse assigned to Paediatrics for the day shifts during the month of November has managed to be present for 2 of 20 shifts. God knew, and without any effort on my part sent me Mary Irungu, Rachel Locker, and Scott Will. Mary is a very sweet and quietly competent nursing graduate, who worked briefly for Kwejuna project which led to a friendship over the last few years. She finished school but is not yet posted in government service, and about two weeks ago just showed up to volunteer on the ward. Rachel and Scott are two American physician assistants from Baltimore, who contacted us and asked to come and help. They’ve been tremendously active, evaluating patients, dispensing medicines, organizing the work for the 30-40 inpatients on the paeds ward as well as antenatal and HIV clinics, not to mention filling in and teaching at nutrition outreaches. Rachel leaves tomorrow to continue a residency program at Hopkins, while Scott will stay until mid-December.
This morning at prayer meeting we read John 20 and Scott Ickes led us in a meditation. When Mary saw the empty tomb she cried, thinking Jesus’ body was stolen. The empty tomb was the best news ever, but she couldn’t grasp it! She saw reality, but did not interpret it correctly. I wonder how often we do the same thing. We see Chase’s developmental problems and the Grays’ anguish, Annelise’s surgery and changing team plans, hungry children and overwhelming work. We feel the story is not working out the way we thought it would, and it seems like the wrong side has emptied the tomb. Then Jesus can come and say our name, and just His voice and presence changes the meaning of all the events around us. That’s what I sense in Masika’s smile, or Mumbere’s bulk, in Annelise’s voice, in Mary, Rachel and Scott’s hard work. They are the ka-celebrations that remind me of Jesus, of The Celebration, of the empty tomb, the old order of death being reversed. So pray we’d hear His voice in our day to day encounters, that we’d wake up to realize that the empty tomb is not a disaster but rather good news.
The plump little girl carrying her cross-culturally adopted white doll baby was born to an HIV+ mom. HIV-exposed, but thriving. The veritable PMTCT poster child.
Yesterday, 185 HIV+ women and their babies came to the WHM Community Center for their quarterly food ration (courtesy of a couple at New York’s Redeemer Presbyterian Church): about 40 pounds of beans, a gallon of cooking oil, and a pound of salt. Some come as far as 25 miles journey for about $20 worth of food. What a privilege to serve “the least of these” with food (both physical and spiritual). Pamela Brown-Peterside has taken this food distribution on as her own: raising the funds, procuring foodstuffs, organizing down to the last detail including porridge snacks for the women who arrive hungry and wait patiently through the day-long process. Our two visting physician assistants, Scott Will and Rachel Locker, spent the morning praying with small groups of the women, hearing their problems, bearing their burdens and bringing these issues before the Father in prayer. The whole day was an incredible team effort (thanks Amy, Kim, Pat, Amina, Jennifer...) with ever increasing number of HIV+ women. Sadly, though, Pamela departs in December after two years serving HIV+ moms and their babies. She will be missed, but thanks to her efforts, we expect these distributions to go on...
All week I’ve been drawn to John 6, Jesus the Bread of Life. I came across this chapter in my regular Bible reading, but kept coming back as I watched kids admitted for malnutrition growing stronger, meditating on how Jesus brings life, to them and to me. This morning we had communion at church, which prompted me to read the chapter again. This time I was struck by the context: the people wanted bread, they wanted the gift, the health, the results, and Jesus said you need ME. I am so much like that. I want a successful ministry or healthy kids, I want peaceful relationships and a good life. Jesus promises in this chapter that He is bringing all that and more, but only through Himself. He’ll set all things right, but not necessarily on our schedule.
The promise and the challenge of that hit deeply right now. Every six months (well, at least annually!) we have a team health day, a time to do routine health maintenance. Some is the typical doctor check-up stuff: blood pressures and weights, reminders about calcium or cancer prevention. Much of it relates to living in the tropics: checking on malaria prophylaxis, updating immunizations, dispensing medicines to intermittently clear the body of other potentially dangerous parasites like schistosomiasis or filaria. It is also a time to pray with people about their emotional, physical, and spiritual health. With a team our size that can take the better part of two days, so we were thankful to put our visiting Physician Assistants Rachel Locker and Scott Will to work. And happily most of what we found was good. For people who live under a fair amount of cross-cultural and plain old survival stress, we have remarkably low blood pressures! Kids who had been a bit on the skinny side were catching up to better percentiles, testaments to the hard work and careful planning of their mothers.
But I went into this period knowing that I was worried about Chase Gray, and actually planned the health days as a way to gracefully call attention to those concerns. Chase is the Gray’s 8 month old, their third son, cute as a button, bright smiles and rosy cheeks, fair hair and kissable pudge. Over the last month it had dawned on me that he looks like a perfect 4 month old, but he’s not 4 months old anymore. Even for me as a doctor looking for problems, I had strong defense mechanisms to assure myself that Chase was OK, just on the slower end of the normal development curve. After all the Grays had been through with Grant, where a quick trip to the US for delivery turned into a four year odyssey of surgeries and therapies for his arms, it was hard to believe that Chase was not OK. Then Julia drew his name for Christmas and decided to crochet him a hat, so I measured his head for her and compared it to my charts. That got me really worried, though even then I thought I might have made a mistake. The night before his check-up I stayed up very late reading up on developmental milestones. By the time I finished I was pretty convinced that his small head and significant lag in development were indicators of potentially serious problems. The next morning I shared my concerns with the Grays, recommending that they go back to America within the month for more extensive evaluations in case there is a definable diagnosis, but more importantly to start on early intervention therapies that could make a real difference in his development.
Well, team kids are family. We’ve all been crying. First it is hard to look at sweet little Chase and project that he might have significant challenges with sitting, eating, walking, talking, learning. It is too early to tell but it could be a long road with a lot of struggle, and that is just plain painful to know. Then it is hard to look at Rick and Wendy our friends, and tell them that even though they thought they’d been through the worst and made it, they had survived Grants umpteen surgeries and managed to move back to Uganda, now they have another child with possibly serious medical problems that will send them back to the States and back to the endless routine of appointments and tests and therapies again. Then it is hard for our team and for our community in Bundibugyo to open up again to the uncertainty, to wonder what the impact will be on ministry and life. God can redeem even this I know, but right now it is hard to see any good in the brokeness of the world as it slams into the Grays again.
Then it is hard to step back and look at the bigger picture. MOST of the families who have served here have left before they planned due to serious physical, emotional, or educational problems with their children. Starting way back with Alan and Sally Lee’s son Ben . . . And now potentially up to Chase. Facing that possibility again takes a toll on all of us. I have some survivor guilt: why are our kids thriving? Yes, there is part of me who is like the people in John 6, all this Jesus and missionary stuff is nice but let’s get to the real point, I want assured daily bread, I want to know my family is going to be OK. But over the last couple of days what I think I’m hearing two things. First, I’m seeing more clearly is that this same Jesus gives himself to all of us, in the ways that we need. Some of our team mates will eat of His life by facing the challenge of children with disabilities, or even death. Others will find Him in the long haul of slogging it out here in Uganda. Secondly, I’m so aware that it is only by God’s mercy and plan that we are still here, so we need to seize the day and plunge into His life and work. Whenever a family has to face a new challenge, our hearts break together, but then I am left with a sense of perspective, that the momentary afflictions we Myhres have really aren’t so significant after all, that it is a privilege to be here. We’ve been given so much! So it helps me to press on, not only for ourselves but for the Lees, the Carrs, the Herrons, the Bensons, the Learys, the Fillyaws, the Tabbs, maybe even the Grays, we don’t know.
Then Jesus said: throw your lot in with the One God has sent. That kind of a commitment gets you in on God’s works. . . I am the bread of Life. I came down from heaven not to follow my own whim but to accomplish the will of the One who sent me. This, in a nutshell, is that will: that everything handed over to me by the Father be completed—not a single detail missed—and at the wrap-up time I have I have everything and everyone put together, upright and whole. . . I am the bread of Life. The Bread that I present to the world so that it can eat and live is myself, this flesh-and-blood self.
Dear Praying Friends,
This has been a heavy week in many ways.
But for now please pray for three things that are on our hearts:
- Surgery for Annelise. On Tuesday Annelise Pierce, who is on a short HMA in the US right now, will have her thyroid gland removed. This is a complicated surgery necessitated by the fact that she was born with an abnormal gland, and while it has given her intermittent issues over the years the doctors at Bethesda Naval Hospital determined that it would be safer for her to be without it, especially living in Africa where we can not follow and treat changes in her hormone levels as closely. The way that God orchestrated her appointment on Friday, bringing her into contact with the best possible specialist through a “chance” meeting in the hall with a friend, and clearing his schedule so that the usual two month wait was reduced to a few days . . . Gave us all assurance of His hand in this care. Please pray for Annelise’s safety, courage, recovery, for the preservation of all the other essentials in her neck (!!) for talking and swallowing. This will delay their return to Uganda for another month, so pray for faith and hope all around, and for God to give them good rest and family time in the interim.
- Evaluation for Chase Gray. In just over two weeks the Gray family will also be taking an unexpected trip to the US. We have been becoming more and more concerned about Chase’s development. He is 8 months old, but unable to roll, sit, grasp toys, babble, or eat solids. For the last month we’ve been hoping he was just a little behind the normal curve, but on Friday we sat down with the Grays and expressed our conviction that this is a more serious problem. It is hard to believe because he’s so cute, smiling, interactive watching faces, and chubby . . . . But his head size and length are significantly below even the lowest normal measurements for his age. We would like him to get a more extensive evaluation to see if there is a definable cause of his problem, and we encouraged a trip sooner rather than later because developmental delays can be improved significantly by early intervention with physical and occupational therapy. The possibility of life-long challenges with learning and movement is very real, which is devastating for any parent to face, and even more so for the Grays who have just been through years of surgical procedures with Grant. Our hearts grieve with them; this is truly where the rubber of faith meets the road, and so many families who have tried to work here have been attacked through problems with their children. Please pray for them to be visited by HOPE, to sense the presence of Jesus with them in their discouragement and confusion.
- Kwejuna Food Distribution. Lastly please pray for tomorrow’s food distribution to Kwejuna Project mothers; we anticipate it may be the biggest ever, with over 150 families expected. Pamela is the primary missionary coordinating these days, and this will be the last one before she finishes her term, though her supporters have offered to fund the distributions for another year (!!). We see the day as an opportunity to show the love of Jesus to the poor and sick very literally (Matthew 25), and it also gives us an opportunity to follow-up on mothers and babies who do not otherwise come in for care. There are interviews, weight checks, blood tests, counseling, devotions, fellowship, laughter, tears . . . It is always a very demanding but worthwhile endeavor. Pray for us as a team as we serve these families.
Thanks so much. I’ll close with Lamentations 3 from the Message, which spoke to me in the grief I feel especially for the Grays in the past few days. Please pray through this for them and for Annelise in particular, that they would enter the silence of God’s presence and wait for hope to appear.
With love and gratefulness,
Jennifer for the team
LAMENTATIONS 3
I’ll never forget the trouble, the utter lostness,
The taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember--
The feeling of hitting the bottom.
But there’s one other thing I remember,
And remembering, I keep a grip on hope:
God’s loyal love couldn’t have run out,
His merciful love couldn’t have dried up.
They’re created new every morning,
How great your faithfulness!
I’m sticking with GOD (I say it over and over).
He’s all I’ve got left.
God proves to be good to the man who passionately waits,
To the woman who diligently seeks.
It’s a good thing to quietly hope,
Quietly hope for help from GOD.
It’s a good thing when you’re young
To stick it out through the hard times.
When life is heavy and hard to take,
Go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
Wait for hope to appear.
Don’t run from trouble. Take it full-face.
The “worst” is never the worst.
Why? Because the Master won’t ever
Walk out and fail to return.
If he works severely, he also works tenderly.
His stockpiles of loyal love are immense.
He takes no pleasure in making life hard,
In throwing roadblocks in the way . . .
Yesterday a friend was at our house and mentioned to Scott that Dr. Crispus Kyonga, the Minister of Defense for the country of Uganda, was visiting Bundibugyo. Dr. Kyonga was formerly the Minister of Health, and we intersected as students at the Johns Hopkins School of Hygiene and Public Health seven years ago. We were Ugandans-at-heart living in Baltimore, so when Dr. Kyonga was in town we invited him to our home. Our funny memory of the event was that even though we were aware of his status as a cabinet member . . . Our kids just saw a familiar African form, and ran to sit on his lap! Anyway when Scott heard he’d be in Bundibugyo for an event of some sort he mentioned that he’d like to greet him. An hour later we got a phone call that the Minister would like to see us and our kids and would stop by. We rushed to put on decent clothes and clean up the front room and wait. And wait. We thought he had changed his mind when at 7:30, in the dark, a motorcade entered our yard, five vehicles including about twenty UPDF armed guards churning our grass into mud. Our member of Parliament, the Honorable Jane, and her husband, and Dr. Kyonga came in to say hello while the army took positions outside. They asked questions about the hospital and the school and talked about their families, drank tea, and at his suggestion (!) we took this photo. Never a dull moment . . . . .
This is Luke’s Senior Four Class, reluctantly gathered for a photo after their CRE Old Testament Exam this afternoon, standing on the porch of the administration block and trying to stay out of the incessant rain. The O level exams continue until mid November, but more sporadically; this was the last compulsory subject which meant the last time this group of kids will all be together. You can probably pick Luke out in the back row . . . His closest friend is the boy on the front left, Kataramu Taddeo, who has been a God Send, literally, a studious orphan on scholarship from Fort Portal, determined to behave well and learn as much as he can. Two rows behind him are Luke’s other good friends, Richard (neighbor whom we sponsor) and Nuuru. Two of the girls were in my cell group for most of the last four years (Dota the daughter of our Bible Translator Hannington Bahemuka is the thin tallish girl in the center).
These kids are the future of Bundibugyo, the cream of the crop in many ways, at least of those too poor to leave the district. Look at them and pray that they will be the generation that eschews corruption, that chooses hard work over dubious short cuts, that chooses faithfulness over promiscuity, that avoids AIDS and alcoholism and witchcraft, that enjoys a wholesome life with a solid family, dependable job, service to the community, that takes risks for what is right, that creates beauty and peace in this land.
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.
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.
