A Son's Sickness, A Father's Story

Sickle Cell Disease is tragically common here. While you may have studied it briefly in high school biology, I'll spare you a discussion of the genetic basis of the disease. Boiled down, it is a genetic disease that leaves the patient with extremely low levels of hemoglobin, so that the heart and lungs have a hard time supplying oxygen to the body. In the U.S. it is a manageable disease. Here it is not. I see hundreds of anemic children with SCD, and I can't think of a single adult with it. You will understand the implications of that.

Aliganyila is my mental image of Sickle Cell Disease. Distended abdomen, stunted growth, big yellow eyes, stick-thin arms and legs, pale palms, malnourished body, frizzy discolored hair. That look, to me it says "sickle cell." He is the embodiment of the disease, as far as I have experienced it. He is also a wonderful boy, playful and amiable, the son of a friend of mine and the nephew of my best Ugandan friend. Jennifer says that his life has been tenuous since he was born. One emergency blood transfusing after another, visits to the hospital or the Myhre's at all hours, rushed trips to the district hospital to get the right blood type, always near the brink, sometimes farther and sometimes nearer, but never comfortably distant from death. A few weeks ago he came to the heath center desperately ill. Heidi told me he had a foot in the grave, and that there was no blood of the correct type anywhere in the entire district. It was supposed to arrive the following morning, but it seemed unlikely that he would survive the night. I went down to the health center to visit him, and it was physically painful for me to see him in the condition he was in. He lay on his side, his breathing rapid and labored, his racing pulse visible in his neck, as his lungs and heart tried desperately to get enough oxygen to his body. For him, just surviving was like running a marathon. Even lifting his head was too monumental and exhausting a task, though he managed to lift his hand a few inches to meet mine as I sat with him. His hemoglobin was just above 2 - for comparison, I would be rushed to the hospital if mine dipped below 8. Just about any child in the States would be dead around 4 or 5. Aliganyila probably hasn't been above 6 in his entire life, with 12 being considered normal. He simply could not get enough oxygen, and he couldn't last long in that state. I don't know if I have ever prayed for anything as fervently as I prayed for Aliganyila's life that day.

Before I continue, I need to mention his family. His father is a friend of mine who lives just down the street - I've eaten meals there and stayed a night or two at their house. He has several children with SCD. About a year and a half ago, before I arrived, one of his sons died of the disease. Then less than three weeks before Aliganyila was admitted at the health center, another son with sickle cell died. A friend told me that he has lost 6 children. And now, with Aliganyila near death, he was facing the prospect of losing three sons in 18 months, and two in less than three weeks. That thought floored me. I can't even wrap my mind around it. I simply have no context that allows me to understand what that would be like. The horror and tragedy of it brought tears to my eyes and a knot to my stomach. I cannot really describe how I felt; horror, anger, pain, doubt, and many other emotions at once. I looked into the father's eyes, full of despair and tears.

Eventually, the blood arrived, and Aliganyila held out long enough to get the transfusion he needed. The next day he was sitting up in bed, and smiled at me as I greeted him. He was alive again. It turns out that at that point, his hemoglobin was still below 4, but his body is so accustomed to the anemia that he was looking pretty good. He received three more transfusions over the next 2 days, but he never got above a hemoglobin of 5, our usual benchmark for discharging a patient. One of the greatest moments of my time here was playing with him one day when I walked into the health center. I held out my fists for him to guess which one I had something in, and he laughed and laughed with embarrassment and chagrin as he guessed wrong 5 times in a row, before finally getting it right and finding the 100 shilling coin in my hand. The smile on his face, the laughter in his eyes, and these coming from a boy who was so nearly dead less than 48 hours before, were some of the most beautiful things I have ever seen. And days later, he was back up at my house playing with the other boys.

He is still sick. This disease will never leave him, and as I mentioned before, I don't know of anyone with sickle cell who has survived to adulthood. His prognosis is not good. But seeing him return from the edge of death to his normal, smiling, happy self brought joy to my heart. His father is relieved, though still scared. How could he not be? I'm left to grapple with hard truths and conflicting emotions. The juxtaposition of joy and sorrow, sickness and healing. The suffering of a father that is too great for me to fathom. A wonderful little boy whom I love, for whose life I am now always afraid. A good God, a God of wholeness, and a broken, painful world, full of suffering. One thing I know: my face lights up every time I see Aliganyila, a loved one back from the edge of death.

Grasshopper Pizza

It's grasshopper season. They're everywhere - flying, hopping, green snacks. You read that right: snacks. Fried or boiled - apparently boiled gives you "the real taste" - people everywhere are chowing down on grasshoppers by the bag full. It makes sense when you think about it, a plentiful, seasonal, nutritious resource, the eating of which also reduces pests on people's crops. But still, there's something disquieting about watching people eat insects.

At our team pizza dinner, Pat showed up with fried grasshoppers, to complement the pepperoni, bacon, and veggies on the topping table. I had heard tell of grasshopper pizza, but it always seemed closer to legend than reality. But soon I found myself munching on a grasshopper - by itself, at first, to get the full experience - and then eating several more on pieces of pizza, thrown on there among the onions, pesto, and tomatoes.

So, there's the story. Grasshopper pizza. Not as bad as you might think. The exoskeleton feels a little strange in the mouth, but it mostly tasted like anything else that you might fry in oil. That being said, I doubt that Pizza Hut will be adding this to their menu any time soon...

A memorable evening

Some moments stand out, as they are happening, as memorable experience, ones that are unusual or foreign enough to me to make me realize that I'm living in a place far removed from my previous experience. I often say of thee moments, "this will make a good blog post." Last night was one of these moments.

Scott Will and I returned home from the Myhres to find our house broken into yet again (at least the fourth time in the last 6 weeks). This seemingly thoughtful thief never trashes the house nor takes electronics - my computer was out in the open - rather he just takes money and usually locks the door behind him. This time, since we've changed and added some locks, we are struggling to figure out how he got in. This time he found my money. It's frustrating and maddening. My emotions were a combination of anger at being robbed, frustration at not having put an end to these thefts, fear that I'll discover the thief is someone I know and trust, and indignation at being treated this way when I'm trying to do good things here. The latter is the hardest part: the feeling of being unwanted, treated poorly or as a source of money by people who I am trying to relate to, to love, to serve. I believe that part of that pain and indignation is legitimate, but part of it stems from an inflated notion of my own importance and a self-righteous sense of what I deserve. I am often frustrated by the sense of entitlement that I feel from some people here, especially those who have known missionaries for a long time, but experiences such as these reveal to me my own sense of entitlement, a revelation that is poignant and painful in its accuracy.

With these emotions swirling in my head, I went to bed. Or rather, I tried to. I climbed under my mosquito net with a book but stopped when I saw something small in the middle of my bed. As I picked it up, I realized that it was a small cluster of what appeared to be insect eggs of some sort. Insects laying eggs on my sheets is simply revolting. I threw them out and started to change my sheets, now frustrated, upset, and disgusted. That was when things really got good. As I started to change my sheets, a large mouse or small rat darted out of my mattress, along the frame of my bed, and into the far corner of the room. Holes chewed in my mattress, mosquito net, and sheets, chunks of foam littering the floor, dried grass brought in from outside. This meant war. One too many things had frustrated me that night, and I focused that anger on this insolent and unfortunate rodent. I called Scott Will, we stuffed a towel under the door to prevent his escape, and started chasing him around my room, sticks in hand crashing wildly on the floor, both of us ready for bed, in our underwear, at midnight in rural Uganda. We laughed at the absurdity of the situation; it was the only appropriate response. It was then that this moment struck me as emblematic, and we both commented that this was a blog post. After several minutes of running, swinging sticks, stomping, and generally tearing my room apart, man triumphed over beast.

So many things went wrong that it brought some levity to the situation. At least life isn't boring.

Aerial Pictures

Here are some aerial shots that I said I would try to get. Above is Nyahuka town.


Aerial shot of the mission, with the biggest building being the community center. My house is just barely out of the picture in the top right corner.


The blue roofs are Christ School, and that's the football pitch where the boys train and play.


The small, straight, light green strip near the center is Bundibugyo airfield, seen through a gap in the clouds.

A weekend in the rift valley

At the risk of representing my life as one spectacular trip after another, here’s an update about my weekend excursion into the great East African Rift Valley. I was accompanying Scott, who was on a trip to see Luke and Caleb at boarding school, and it was a chance for me to see a different part of this continent. We boarded a 4-seater Cessna here in Bundibugyo and flew out on the one-year anniversary of my arrival in Uganda. The next day we flew to Nairobi and hopped in a taxi for the hour and a half drive out to RVA. I was totally unprepared for what it would be like. We climbed higher and higher, reaching over 8,000 ft on the edge of the escarpment overlooking the rift valley, where the view of the plain several thousand feet below stretched as far as I could see, rudely broken by Mt. Longonot towering up into the sky from the middle of the massive valley. The sun breaking through infrequent gaps in the clouds created a beautiful speckled pattern across the plain as far as I could see. We began the descent down the side of the escarpment, and reached Kijabe, home of RVA and a remarkable mission hospital, about half way down, still perched around 7,000 ft with a stunning view of the rift valley. Despite the amazing views and spectacular landscape, perhaps the most amazing part of it was this: the temperature was cool. The air was crisp and clear, with a strong, cool breeze. The cold blue of the sky was unlike any I’ve seen in Uganda, and I commented to Scott that it felt a bit like September in New England – and that came from me, who spent 4 cold autumns in northern Massachusetts. The next morning was cold and rainy. I again commented that it felt like fall in New England. At a high altitude, even in the cool weather I burned badly in the sun after being outside all day Saturday, but this wasn’t the hot humid burn that I get in Bundibugyo; it was a cold, dry, chapped burn, reminiscent of the feeling I get after a day spent skiing. In spite of the discomfort, I thoroughly enjoyed being outside in the cool weather, as it is something I haven’t experienced much in the last year.

I met some fascinating people while I was there, including an American doctor who has been working there for 30 years, and a British doctor who calls his soccer referee’s license the only qualification that means anything to him.

After spending the weekend at RVA, watching the boys play soccer, checking out the hospital, and attending a wonderful cook-out, we got in a cab back to the airport. You might think that this would be a less interesting part of the trip, but you would be wrong. Nairobi is a dicey place at night. First we realized that the driver had alcohol on his breath. Then a policeman, after seeing white people in the car, attempted to stop us in traffic, likely to try to get some money out of the situation. The driver, probably both trying to avoid being extorted and to avoid trouble for drinking and driving, ignored the officer and tried to drive away on the shoulder. I looked behind us, and could only see two things: the policeman’s flashlight bouncing as he ran after us, and the barrel of his gun illuminated by the flashlight’s beam. After the officer slammed his hand down on the trunk of the car, the driver sped away on the shoulder. Next we saw a large pool of blood on the road. It wasn’t hard to imagine how that happened, as people were constantly running across the busy, unlit road. At the airport, the power went out as we were waiting to check in. That’s right, a major international airport, one of the main arrival and departure points on the continent, was without electricity, except for some emergency lights. With computer check in shut down, we waited as each passenger was checked in by hand, with hand-written boarding passes (incidentally, the woman checking us in didn’t have her own pen, asked to borrow one from me, and then asked to keep it, to which I said yes, if only because I didn’t feel like arguing).

The following morning we boarded a Cessna again for the flight back out to Bundibugyo, my first time making this flight. Right after takeoff I discovered a frog around my feet – welcome to the tropics – and briefly considered dropping him into Lake Victoria below us before I thought better of opening the window. Flying in these small planes is amazing, amid spires of cloud hundreds of feet high, one feels much more a part of the sky than when cloistered in a commercial jet that tears through the air at immense speed. Instead of taking us around the Rwenzoris, the pilot opted to go straight over the mountains, climbing thousands of feet as we drew closer. I’ll admit to being a little nervous as he tried to keep the plane under some heavy clouds and over the mountains, a task which gave him rather little elevation to work with. We moved through a lower pass, and I could look up at mountains on either side of us and see individual leaves on the trees below, and we then dove steeply down the other side, almost sliding down the back of the mountains as the pilot searched for a hole in the lower cloud cover to drop through. When he found it, we were almost right over the border and could see the airstrip, Nyahuka, the Christ School football pitch, and various towns in Uganda and Congo from thousands of feet. It was striking to see how close together so many things are, contrasted with how long it takes to move from one to another. Towns that are a 1 hour walk or 15 drive apart appear to be almost touching, with the poor, winding roads making travel between them difficult. Even towns on the other side of the border look to be only a stones throw away (ok, a pretty long stones throw). We swooped low over Nyahuka for Scott to get some pictures - again a bit too low for my comfort, probably only 300 feet - before dropping onto the grass airstrip. These pilots amaze me. The neighborhood kids were abuzz with excitement over the low-flying plane, and one commented that he thought I must have been the one flying it, since it came down so low. It appears that these kids understand, and attribute to me, the recklessness of youth. (I’ll work on getting some of those pictures from Scott. The aerial view is pretty cool).

Sometimes I feel like I’m always writing about my latest trip, the latest amazing place I’ve gone. For one thing, they’re the easiest to write about. But it is true that I’ve seen some amazing things in the past year. So it made me think: life here isn’t easy. There’s the stress of living in a foreign culture, many, many fewer conveniences, the separation from friends and family, the suffering that is constantly before my eyes. But there really are many benefits as well, including the opportunities to see some spectacular parts of the world that I never would see if I didn’t live here.