Leprosy Settlement and something different

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My favorite patient, August, invited me to visit the leprosy settlement adjacent to the hospital where he lives. Dr. Yousuf took me there. I found August will all of his friends laughing and talking excitedly over chili peppers and chopped mushrooms  and other vegetables they were preparing to cook. These are people who have deformities from leprosy and do not feel comfortable living out in the public where stigma hurts them deeply. So they live like one big  happy family in this settlement. Actually I found it to have collegiate community atmosphere; people hanging out together on porches– young people living in their own apartment dorms without parents because parents will sometimes abandon their children who contract leprosy. The settlement is self-sustaining: there are farms, restaurants, shops, bicycle repair shops, hairdressers, mosques, and anything you can imagine.

In the afternoon I had such a contrasting experience to the morning in the settlement, it was almost  jarring. I had promised one of the physiotherapists that I would go into the city with her daughter who was excited to meet an American. I was picked up in the afternoon. On the way to Jakarta in 3 hours of traffic I discovered that the daughter and her friends were only 17-years old. They were high schoolers. This is going to be interesting, I thought, as they talked excitedly about boys and their favorite pop stars. I had no idea where they were taking me. I hoped we would be going to the Wayang museum. But it turned out they were taking me clubbing. I didn’t know what to do but go along with it. What can you do when you are 3 hours away from your home without language to communicate your concern or ask what is going on. So I went to the apartment with them and waited while they peeled off layers of clothing and caked on layers of make-up.  “you should wear these” one of the girls told me, handing me a pile of sequins. There was a tube top and a mini mini skirt. I just can’t wear this kind of thing after India and Uganda where anything above the ankles is scandalous. So I opted for my Ugandan dress which is certainly not a clubbing dress but I like it and I imagined the club to be somewhat like the dance bars in Thailand (relaxed and low-key). But I could not have been further off. ” Le Club” had a $100 entry fee; it was high fashion VIP Jakarta. I felt out of place, annoyed about the cover charge, and hopelessly stuck. I can’t just go home and say look, this really isn’t my scene to my youngster friends because they were the only ones who could get me back to the hospital which is 3 hours away. So i just went along with all of it. I thought even if I feel slightly abducted by high schoolers, I can still have fun. I have learned by now how to surrender. So I did.  And I did have fun. The club was fancy, spectacular laser lights cutting though the crowd and base throbbing to my heartbeat. This is Jakarta’s club scene. My friends had a great time as well and the whole night ended up being a great success.

Indonesia mini culture tour

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Cecep, the father in my Indonesian family, took me on the mini culture tour of Indonesia. It is a park in Jakarta with all of the Indonesian islands represented as mini islands in a lake. There are structures from every tradition of architecture: Bali, Sumatra, Java, Lombok, Borneo, Nusa Tenngara, Kalimantan, Sulawesi, and others that I can’t even remember. Indonesia actually consists of between 17,500 and 18,000 islands. Can you believe that? And each inhabited island has a unique culture of food, clothing, architecture, stories, and even religions. Indonesia has a long history of human inhabitants. Homo erectus is thought to have inhabited Indonesia more than 1.5 million years ago.  In 2003 archeologists found the remains of an early hominid called Homo floresiensis dating back appr 74,000 years.  Wikipedia says these ancient people might have floated over to the Indonesian islands on bamboo rafts 100,000 years ago. Then homo floresiensis went extinct in 12,000 BCE after the eruption of a volcano on the island Flores. Again according to trusted source Wikipedia, people from Taiwan came to the Islands around 2000 BCE. Eventually Buddhism and Hinduism arrived and then Islam swept over the country giving Indonesia the highest population of Muslims in the world. The Dutch came in and ruined things like colonialists always do. I visited the court house in Jakarta where the Dutch used to hang Indonesian people. There is a dungeon in the building that my Indonesian friend Juwita refused to enter because she said what went on down there is too creepy and tragic. Torture.

Back to the mini culture tour:  I noticed that one thread in the architectural styles from each Island was the emphasis on roof. All of the buildings had very prominent roofs. Why was roof so aesthetically important to these people at this time?A roof is a cap, or the head of a structure. It is the part that points to heaven. It is the part that isn’t directly connected to the earth. Maybe the people were less grounded— less interested in the heavy solid gestures but more inclined toward ones that lift the building up up up in a pointy roof towards heaven. I remember in our History of Architecture main lesson block all the way back in high school we spoke about how the gestures of buildings were actually reflections of how people identified in the world.

Le Petit Piano

After work today I found a piano in the conference room! I asked the rehabilitation officer to help me find some young leprosy patients who would like to learn how to play the piano. The keyboard is really short. Only 4 octaves. So when I played Beethoven it had a very squished sound. But nevertheless, it is a keyboard and I can play it. 

Monday: swimming in files

I spent most of the day in the medical records office (which does not have air-conditioning and I felt as though i might pass out if I have to rifle through another file in this heat!). It isn’t easy finding cases that we can use in our study because medical records here are not computerized. So I have to collect files, read them (most of the notes are in Indonesian) and write pertinent information in my notebook. I am so lucky to have the constant help of a wonderful translator. She is also really good at reading bad physician hand-writing because she grew up in the hospital. We have read through hundreds of files and so far we only have 33 cases that we can use (because we have to discard cases that have un-documented reactions or treatment regimes). So it isn’t easy. But it is astounding to peer into somebody’s life and see that these reactions took hold of their entire existence, bringing them into the hospital every month for years because of the severity.  Some of our patients came to the hospital every month for two years with repeat ENL reactions that obviously don’t go away with prednisolone (which is the available and legal treatment for ENLs). We even found some cases of steroid dependency because such patients are on high dose corticosteroids for prolonged periods of time. It is such a mess. Prednisilone obviously isn’t working to treat ENLs for these patients and without proper treatment (thalidomide) they are succumbing terrible deformities.

Monday: My Project

I am working on a project that I consider to be extremely important. There are particular restrictions that prevent doctors from prescribing the preferred treatment for complications in leprosy such as repeat erythema nodosum leprosum (ENL) reaction. These inflammatory reactions occur because the immune system is reacting to the presence of live or fragmented M leprae bacilli. A reaction can cause irreversible damage to multiple organ systems, most prominently peripheral nerves. Under high pressure from the inflammatory response, nerve cells are compromised and can die. They do not grow back.

There is a highly restricted drug called Thalidomide that can treat ENL reactions effectively because of its anti-inflammatory action. In the 1950s Thalidomide was developed as an anti-nausea pill for morning sickness and a sedative. The problem is that the molecular structure of thalidomide is a racemer, and thus can flip between its mirror image forms (enantiomers). Unfortunately the mirror image of the active agent is teratogenic, causing birth defects in more than 10,000 babies whose mothers took thalidomide during pregnancy. So thalidomide was banned. In 1998 the FDA warranted its use in special cases including treating aggressive repeat ENL reactions.  Indonesian law prohibits the use of thalidomide. My project, together with three doctors here at Sitanala hospital is to write a serial case report on patients at Sitanala who are good thalidomide candidates, request the drugs for a trial, conduct a longterm clinical trial for cases in this hospital and then if results are positive, push minister of health (MOH) and the Indonesian government to lift the ban on this drug for these patients. We might just present the serial case report and propose for the ban to be lifted without the clinical trial. I am excited about this project because it could really help these reaction patients who don’t respond to the current available treatments.

Reactions are the debilitating complications of leprosy. Throughout the world different kinds of patients present reactions differently depending on their genetics. But frequency of reactions also depends upon treatment of leprosy. I learned in Thailand that it is possible to prevent reactions from occurring by informed modifications to the multi-drug therapy (MDT) which is the antibiotic cocktail that treats M leprae.

In reading about thalidomide therapy I came across a piece of information that may explain why I observed such a low frequency of ENL reactions in the McKean hospital in Thailand. The physician at McMean explained to me that he used a different MDT regime for his patients so that they received higher and more frequent doses of clofazimine which is part of MDT. Clofazimine has anti-inflammatory properties as well as bactericide action. I read in Dr. Lockwood’s journal: “[the efficacy in treatment of ENL reactions with clofazimine] has never been formally tested but a multi-centre study of different chemotherapy regimes in patients with lepromatous leprosy showed that regimes containing clofazimine given 100 mg three times a week for 5 years were associated with a lower rate of ENL. The protective effect of clofazimine in preventing ENL is lost after 1 year when MB MDT is stopped. This beneficial effect will be shortened further if uniform MDT is introduced.” (Steven L, et al. 2007. The role of thalidomide in the management of erythema nodosum leprosum. Leprosy Review 78: 197–215).

The clever Thai doctor was using an already approved and available drug to prevent reactions in his patients after having treated similar cases at that hospital for 30 years. I commend his work. Because thalidomide is so heavily restricted, any other therapy that prevents or ameliorates ENL reactions is critical. But here in Indonesia patients present aggressive blaring ENL reactions and they deserve the chance to try thalidomide.

So our task is help patients get the medications they need to reduce morbidity from ENL reactions!!

kites and bicycles

The sky fills up with kites on Saturday. During my run with Yanti (mother) we passed throngs of boys whose eyes were fixed somewhere hundreds of feet in the air. Other boys riding bicycles had wedged empty plastic cups beneath their cantilever brakes so that the bikes roared like little motorcycles when the boys peddled. Many of these children are the sons and daughters of former leprosy patients who now live in the settlement. 

 

Sitanala Staff Aerobics

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I woke up early to attend “Friday Hospital Staff Aerobics”. The staff have organized a weekly exercise routine in which a trainer brings a small stage, enormous amps and speakers,  a CD with the best combination of 80s, 90, and today. Mostly ladies attend. They dress in full “batik” with hijab despite the heat and movement.  Male staff also join in although their movements are clumsier and they have trouble keeping up with the steps. The instructor leads the group in dance routines that they have clearly done before because they are experts, all moving together to the beat, kicking feet out, pumping arms, curling abdomens. I joined in, struggling to keep up. I couldn’t stop laughing. The idea of a whole hospital staff exercise routine anywhere else in the world sounds impossible, but here in this country of fun-loving, light-hearted people, it is the best idea. I had so much fun with the ladies (and three determined gentlemen) that it hardly felt like exercise at all. Afterwards I could tell we had moved quite a lot because our clothes were sopping wet and our faces red. They gave me hot sweet lentil soup (an interesting choice after a hot work out) but it was actually delicious and exactly what my body needed. I am excited to attend all the aerobics classes at Sitanala.

That afternoon I got to see my favorite patient. He is a very tiny man and his wife is a very large woman. They are sweet together. August (that is his name), invited me to the leprosy settlement. He wanted me to come to his home where he will show me around. He told me there is no stigma there. No problem. You can have any deformity and you will still be accepted. I can’t wait to visit him at his home. I just have to think of the right sort of gift to bring… ideas?

In the evening we piled into the minivan to go to the supermarket where we could buy all ingredients necessary for traditional pizza. I was excited to share something with this family that has given me so much. The supermarket pretty much blew my mind. It is nestled deep inside a posh and intoxicating super mall. There are designer shops glittering behind glass, technology whizzing and whirring and flashing, people people everywhere not looking at each other, but having eyes only for the things that pop out of advertisements capturing everyone’s attention. There was too much to see. My brain felt overwhelmed. Finally we arrived at the super supermarket. It was sparkling just like the rest of the mall and stocked with imported olive oil, tomato sauce, flour, mozzarella cheese, and all other worldly delights. We got all lost in the supermarket and ended up getting home too late for pizza making.

Director

The director of Sitanala Hospital is the nicest sweetest woman. She sat me down in her enormous office on the top floor  of the hospital (pent house). I looked around at the puffy couches, desks, pictures hanging on the wall, and surveillance monitors! I was so distracted by these footages of people —patients, staff, attendants moving around in the wards, lobby, hallways, elevator… I wondered if she had seen me touring around the hospital in her glass tower with peepholes into all departments. But meeting her and observing her gentle and warm demeanor, I didn’t feel threatened by the surveillance. She keeps an eye out for her patients and staff and that is a good thing.  She put her hand on my shoulder when I was getting up to leave and told me we would see each other July 4th for the hospital anniversary celebration.

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Amputation

 

I woke up early after a night of little sleep. I had made myself wake up several times because there was a woman in labor. I wanted to see and maybe assist in the birth. But finally, at 4 AM she was sent to the emergency room. I went back to sleep nervously thinking about her and her baby. In the morning I went to meet Dr. Prima in the rehabilitation center. She is my contact person from months ago when I decided I wanted to see Indonesia. It was wonderful to meet her and work out my schedule for the month that I will spend at Sitanala Hospitall. I will be assisting in wound care, operation theater, out patient department (OPD new cases), charting and screening (also new cases), ward rounds, statistical analysis, physiotherapy, occupational therapy, and rehabilitation. I am particularly excited about the rehabilitation because apparently former leprosy patients have a vocational training center where they sew, carve, paint, weave, etc. I would love to spend a day making art with them and maybe teaching about some of the crafts that the former leprosy patients make in the KRMEF village in Nepal (http://krmecofoundation.org/). Dr. Prima was so kind and gave me a beautiful red necklace! I need to think of gifts for all of my friends here who keep giving me things and beyond things!

I went with Dr. Yousuf to the canteen for fruit smoothie snack. Delicious mango kiwi smoothie! Then we tiptoed into the surgical theater. Shoes off. Stepping into the break room which is located between the entrance hall and the theater we were greeted by giggling surgeons playing chess on the floor. We had walked in on a check mate. “Perfect timing” one of them said, beckoning me to the floor. I sat and positioned my pieces. I thought about the last time I had played chess. Must have been over a year ago. The only chess instance that stands out in my memory is when I spent New Year’s Eve in a little cabin in the Blue Ridge Mountains playing chess and drinking wine. That must have been at least four years ago though.  I forgot how much chess pulls your mind into the board and into the future. Anticipating: if he moves here, then I move there, then he moves here, I could go here or here…. then check mate! I won! But I really can’t take credit because a little surgeon dressed in scrubs kept whacking my arm whenever I was about to do something stupid.

After chess the nurse handed me fresh scrubs, a mask, and cap and pointed to the dressing room. I changed, feeling a little bit queazy about the imminent amputation. That is my least favorite surgery. To have a piece of your body taken off permanently like an arm or a leg is tragic to me. I get a bit emotional. However, the patient wanted this procedure because his foot was no longer viable. He would never walk on it again anyway. At first it was hard for me to watch his body being mutilated, but after some time I became interested in the many layers of facia, nerves, vessels, muscle, and bone that were being displayed in perfect cross section. The surgeon pointed out a grotesquely enlarged posterior tibial nerve (infected with M. leprae). The patient was awake and I kept walking around the table to check on him. I told him he was a very brave man and Dr. Yousuf translated. The patient beamed and stuck his thumb in the air. Finally, a muscle flap was created over the bone end, a drain inserted, and the tissue and skin sutured closed.

I visited the patient the following day and he seemed to be doing very well. He gave me permission to post these pictures and requested print outs for his own records.

Night Market and Gamelan

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We walked as a family through the leprosy settlement in Sitanala toward the night market. It is a small market, about the size of two basketball courts. There is a kiddy train and ferris wheel. There are clothing shops and traditional food stalls. Patients, staff, and outside people all mingle among fruit stands and boiling pots of oil. I bought apples and eggs to share. We walked back to the house to drop Yantina and the children off. Then Cecep and I rode the scooter to the Gamelan rehearsal. It is in a school classroom located within the hospital campus. The room is packed with enormous ancient instruments, filled with smoke from the musicians’ cloves and Djarum, and lit by the warm stage lights illuminating the puppet show. I sat mesmerized by the music. Gamelan transports you gently into an altered state of consciousness. The music is both repetitive and innovative/exploratory. They use a secret number system code to read music. The numbers range from 1-7, indicating do, re, me, fa, sol, la, ci. They write reams of these numbers and play 40 minute songs without taking a break. I learned how to play an instrument made out or resonant gold pots. I also learned how to play a bamboo instrument and this I got to play in one of the songs. 32122121313.. . I was particularly drawn to the Wayang master (puppeteer). He brought the intricate Indonesian puppets to life, seamlessly moving their arms, heads, and giving them voice. As their shadows danced across the curtain,  I wondered about the historical importance of the Wayang. They are part of an ancient Indonesian tradition. The earliest record of the Wayang dates back to the 800s, a time when ancestral spirits cloaked the communities in stories, art, theater, dance, and superstition. Semar is believed to be the ancient spirit of Java and appears in many Wayang stories. I think he was there tonight in the story, but it was in Javanese so I may have misunderstood. (I read about Indonesian art and history from this website: http://education.asianart.org/ and I highly recommend checking it out).

Wednesday Post

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Cecep took me to the post office early in the morning so that I can finally send these letters that I have been writing since the beginning of my year in India. Seriously, I have carried them from country to country, collected stamps, envelopes, even addresses, but for some reason I just never sent them. Now I was determined that these letters arrive at their respective houses before I do (which is just over one month away!). The post office was unbelievably packed with people. They formed lines that snaked through the parking lot. What are they waiting for I asked? Certainly it couldn’t be post marks. “Money” Cecep told me. The government gives economically disadvantaged families 150,000 ru/ month. That is about $15/month, but it goes a long way.

I played pingpong with patients and staff in the afternoon. I am improving! I still have to learn the slam though.

Family Dinner

Cecep, Yanti, and the kids have accepted me into their family warmly. They noticed that I am vegetarian so they took me out to an all vegetarian restaurant called “Visual Veggie”. It was Chinese food. Even though we cannot have philosophical discussions about the human condition across the language barrier (not that I always want to talk about pretentious things either, but just as an example) I really enjoy our broken English conversations and non-verbal communication. 

Ulcer Dressings and OPD

 

Unfortunately I dressed in my white shirt from India this morning. I hadn’t thought ahead to what I would be doing in this shirt. Ulcer dressings! I walked down the white tile walkway to the ulcer dressing clinic. I met the friendly staff there who handed me a pair of gloves and a beckoned for me to follow. We went into the medical stock room, peering into cabinets and rummaging through shelves filled with bottles. We found betadine, normal saline, and some yellow liquid that looked paler than magnesium sulphate which sucks moisture out of wounds. The nurse gave me a pair of gloves, some forceps, medicines in bowls, and a cart on wheels, a gentle push and I was off! I saw some devastating feet. Some of these wounds are three years old. I worked alongside the nurse to clean and wrap the wounds. At one point, wringing out the drenched gauze with forceps (which I was proud to see that I could still perform this smoothly) I dribbled the yellow medicine all down my front. Looking down I thought “what an unfortunate color for a stain but at least it is small” just as the nurse, who was also wringing out gauze, sent a huge splash of more yellow liquid onto my shirt. I finished ulcer dressings anyways, then went home for a shower and to retire my shirt.

That afternoon I got to observe in the OPD. This is one of my favorite clinical activities because we get to be detectives, looking at new patients and trying to determine what they have and what they need. We saw several patients with blaring reactions. Puffy red faces, painful nerves (neuritis), fever, sweating, red and swollen nodules, a type 2 or ENL (erythema nodosum leprosum) reaction. One of the doctors confessed to me that when she first arrived at Sitanala, 14 yrs prior, she was terrified of the disease. She refused to touch her patients. She sat far away from them as she took their histories. But soon she discovered that leprosy is not a disease to be feared and those it claims need to be respected as humans, looked at, touched, accepted. She learned that leprosy is not highly infectious and her risk of contracting it is low. She learned about early treatment which can cure the disease before the onset of deformity. She told me that over the past 14 years she has not been afraid or hesitant to interact with leprosy patients.

Traditional Indonesian Wedding Party

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We piled in the van en route to the staff wedding party. In the back seat 3 female physiotherapists sat were making a racket. They were so funny. I kept turning around in my seat to see what the joke was. I  thought about my female colleagues in India and and other parts of the world and how quiet and reserved they could be in public. Here women seem to have a boldness and assertiveness of personality like nowhere else. The wedding party took up a whole block in the neighborhood. It was situated in a courtyard among several houses. The seats were covered in yellow silk and a matching canopy shaded the party from the glaring sun. Fans blew cool air around and live music played romantically. The bride and groom sat perfectly on their thrones receiving all guests. They were matching, dressed in green. The bride reminded me of a peacock because everything about her was spectacular, intricate, and ornate, and I felt as though I could stare at her all day and still miss details in her gown, headdress, makeup, and accessories. I waited in line to congratulate the couple. First the bride took my hands in hers, cupping them and pulling them towards her heart, then the groom repeated this. Both of them held perfect and unwavering smiles the whole time. They must already have done this a thousand times today!

We ate traditional Indonesian lunch. There was tempeh, yellow coconut rice, vegetable dishes, sea food soup, and jelly dessert (I don’t know how they make the jelly stuff but my doctor friends here swear it is good for digestion). They gave us sweet souvenirs (jewelry and pencils with small figures on the ends).

Sitanala Leprosy Hospital

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I went to the hospital in the morning. Cecep took me around to each of the departments, introducing me to doctors, security guards, medical staff, and patients alike. Sitanala is an enormous and sophisticated hospital. The walkways are glistening with white marble tiles, the buildings are all air-conditioned, spotless, and decorated like hotel lobbies. We visited the rehabilitation department where Cecep works and I was surprised and intrigued to find a pingpong table in the center of the atrium. This is the place where patients and doctors and medical staff become equals, competing earnestly with each other in teams of two. I took the racket, standing next to one of the female physiotherapists and the game commenced. I wasn’t as rubbish as I thought I would be and we actually won! (My teammate has a wicked slam). I observed how happy the staff and patients are. There is zero stigma concerning leprosy in this hospital. Some staff are former leprosy patients and others are the children of current patients. I observed that people here in this hospital celebrate life, even in morbidity and disease. They are exuberant, boisterous, full of jokes and pranks. I think Im going to like it here.

Sunday

My phone rang, bringing me from obscure dreams into an unfamiliar room. “Where am I?” I thought with a jolt. This rarely happens. I can be awakened from the deepest sleep in the strangest place and still remember where I am. But this morning was a real shock somehow. It was Cecep on the phone, telling me that he was ready to take me to the fruit market. We drove through thick traffic, pollution, and heat to the open market. I was astonished to see such eclectic fruits! There were kiwis, apples, bananas, dragon fruits, watermelon, honeydew, strawberries, jackfruit, papaya, pineapple, weird things i can’t even begin to describe, oranges, lemons, etc, etc. I had grown so accustomed to the 2-3 fruit selection in Uganda that seeing this myriad of fruity delights was overwhelming. Maybe I should just buy one of everything. I stepped into a Chinese temple filled with incense, music, offerings and people delivering offerings. I lingered in front of these ancient chinese figures for some time. They were enormous with black metal faces and broad barrel bellies. Their faces didn’t resemble Chinese people even remotely and I wondered what had inspired these figures. 

After returning from the fruit market, I gathered my things from the hotel and went to Cecep’s home, where I will be living for the month. His wife is the midwife at Sitanala hospital and her clinic is attached to the house. In the first few hours that I spent in my new home two babies were born. I somehow missed both births because the women were so quiet, but I look forward to welcoming many new babies into the world this month.

Into Indonesia

I had booked accommodation at a sketchy hotel with questionable airport transport. Of course when I made it through customs at Jakarta International airport there was no airport-hotel transport. I made friends with the receptionist ladies at the customer care counter. They helped me call the hotel and told me the driver would be waiting outside the airport. When I left the air-conditioned comfort of the airport I was met by a wall of heat so thick and so polluted that I gasped for air. After taking some drama queen moments I noticed my name “DANIELA ROSE” swimming before my eyes. I looked to the faces that carried the sign. There were two men, one a security guard in full uniform and the other casually dressed. Neither spoke English. I assumed they were from the hotel, but as we drove it dawned on me that this was the hospital security guard and driver and these men were not taking me to the hotel, but rather Sitanala hospital. How they knew to fetch me is beyond me. I felt so touched.  I called the hotel to cancel my transport (however I have no idea what the receptionist understood because he didn’t speak English). We pulled into the hospital campus and went around to different doctors’ houses for introduction. The wonderful hospital staff took it upon themselves to care for me as if I were a queen. Cecep, the rehabilitation specialist took it upon himself to see that I get everything I need. So he drove me to the shopping mall to buy an internet modem. Then we went out for dinner at a delicious Indonesian restaurant. The tables are about 1 foot high and situated on small islands in a sea of a restaurant (there is actually water between the tables!). There was live music and plenty of old men dancing. The fish was served vertically, as if it was about to swim off the plate. We drank kiwi juice, coconut water, and tea. I smiled so much that my cheeks hurt. 

Then Cecep, the driver Usman, and the security guard took me to the fanciest hotel in Tangerang (this was a misunderstanding as I already had a room booked at the sketchiest hotel!). Not able to discuss things, I went ahead and checked in. I suppose I could benefit from a bath and comfortable bed and 5 million news channels.

 

North of Thailand (le petit vacances)

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After visiting McKean Rehabilitation Center several times and learning a great deal about leprosy in Thailand (which consists mostly of patients coming from Myanmar), I took a trip to the far north to see the jungle.

McKean Rehabilitation Center Charity Bicycle Race

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McKean Rehabilitation Center

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I took a red truck taxi outside of the box city of Chiang Mai to the beautiful surrounding nature where the historic leprosy hospital is set. The McKean Rehabilitation Center is enormous, acres of meadows, T-tree plantations, 200-year old ficus trees, crumbling wards, new wards, 17th-century style houses, small cottages where old patients live, and everyone moving around the campus on scooters because of its vastness. Dr. Pajon took me around on a tour. He is an elderly man with wispy silver hair and smiling eyes behind thick glasses. He has been practicing medicine for more than 50 years!

He showed me leprosy patients having reaction. We saw both type 1 (red patches, neuritis) and type 2 (ENL: erythema nodosum leprosum). One of the patients having reaction was having his hair cut by the hospital barber on the wrap around porch. I asked about how Thai leprosy patients typically present deformity. Dr. Pajon said that even through these patients frequently have reactions, they rarely develop deformities like clawing of hands, contracture, and absorption of bone.  The answer to the question is very interesting, but I have decided not to post it here in public space.  We visited the cottages of patients from Myanmar with active disease. Today there are very few new leprosy cases in Thailand, but many come here seeking treatment from Myanmar. I thought about Dr. Saw, my  roommate in India who is the only reconstructive surgeon in Myanmar. Why are all of these patients coming to Thailand when they could go to see Dr. Saw in Myanmar?

We also visited the cottages of patients who have been here for over 50 years, from the time when leprosy was not curable and posed a huge burden on Thailand. One old man whose face knew no other expression than warmth and happiness held up his hands and smiled for the camera. He has been here for most of his life and never wanted to leave even when his family encouraged him to go home. He said he was afraid that his community would not accept him so he chose to live his life at the hospital.

One of the very kind hospital staff members drove me all the way back to my hostel in Chiang Mai. He invited me to attend the 105th anniversary of McKean Rehabilitation Center, during which we would be riding bicycles on a 22 km countryside loop together with leprosy patients. “This is incredible, and familiar,” I thought as I remembered my bicycle trip across America raising awareness about leprosy. Things always come full circle.

Into Thailand

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Chiang Mai is a city of temples, yoga studios, massage parlors, and nightclubs. It is one of the easiest places in the world to make friends because everyone is looking for exactly that.

Do You Know The Heart?

I packed my things, said goodbye to Sara and the kids, and headed for Entebbe. I would stay the night there and fly to Thailand the following morning. On the Matatu to Entebbe I was inspired to write a children’s book. As I sat, squished with my things and people against the window, many different passengers boarded and dismounted every 400 meters or so. A three-year old accompanied by her mom with a new born got on. First I noticed that compared to her body, her head was enormous! She was fascinated by my pale skin. She took my arms in her tiny clammy hands and began stroking them. She told me her name was Joel. 

Then  she asked: “Do you know the elephant?” 

For a moment, I paused, not sure how to answer. “Yes, I know the elephant,” I replied as images of elephants drinking from the river at the Queen Elizabeth Park came to mind. 

“Do you know the hen”? She asked.  

“Sure, I know the hen, I said, “but do you know the goat?”‘ 

“No, what is the goat?” 

We peered out the window and sure enough, a fat goat on the roadside was visible. 

“This is the goat I said.” 

“Do you know the tortoise?” She asked. 

I thought about the enormous tortoises in Madagascar lazily rummaging around in the dirt. 

“I know the tortoise,” I said, “do you know the papaya?”

She looked confused. I scanned the fruit stands outside my window: “There!” I pointed. Joel followed my finger to the stand overflowing with papayas, bananas, jack fruits. 

“The green ones?” 

“Yes, that is the papaya”. 

“But do you know the fish?” She asked excitedly pointing to the fish stand next to the fruits. 

“I even know the fish in the great big ocean.” I  remembered the St. Wally fish that had comforted me as my knees trembled scuba diving at the bottom of the ocean. His lips were so pronounced, his scales soft and grey. He had cuddled right up to me probably expecting handouts but nonetheless comforting me. 

“Do you know the butterfly?” I asked. 

Joel clasped her thumbs together, fanning her fingers out and beating the butterfly wings in the air. “I even know the snake,” she said as her hand shot out and began slithering over her knees. In a hushed and serious voice Joel asked me if I knew the moon. I bent my head to see the sky out the window, but there was no moon visible. I didn’t say anything because I couldn’t decide if I knew the moon. I have seen countless moons. Full yellow moons in the Ugandan villages, parcival crescent moons in the Nevada desert,  blood red eclipse moons, lazy moons in a sky of stars over the ocean, cloudy moons through the thickness of evergreen branches. I only know the moon by the different kinds of light it reflects and the different shapes it makes visible. That is not the moon, so do I know the moon? 

A man got off the matatu and tipped something over so that it fell out of the vehicle. It was a bucket full of hearts. They spilled out onto the dirt, rolling around. The conductor was furious! I imagined this was his meal for his family, now full of dirt and small stones. He stooped to the ground and began picking up his dusty hearts. He plopped them one by one back into the bucket. I felt so much sadness for him. Of course this was an accident, but the consequence was very sad. I asked Joel if she knew the heart. She shook here head slowly. I put my hand over her chest: “lub-dub, lub-dub lub-dub”.

“Those are cows’ hearts on the ground, and this,” I tapped her chest, “this is your heart. It beats because you are alive.” 

 

Morgue

We asked a nurse to direct us to the Morgue in the basement of Mulago Hospital, Kampala. Mohammad was giving me a full tour of the hospital. The nurse told us to walk all the way down the corridor and open the doors on the left. The corridor felt endless as we anticipated the grisly scene we were about to behold. “Are you gonna faint?” Mohammad asked me. “I feel OK for now,” I said nervously. We pushed through the doors and my eyes fell upon autopsy sinks and sopping floors. In each basin of a sink lay two bodies. On the floor a pile of small bodies, barely covered by a sheet. The ones in the basin sinks had either been autopsied and had the long line of sutures extending from pubis all the way to the tip of the chin, or were being worked on. I watched the mortician empty a chest and abdomen of all their organs and connective tissues. A massive liver, a pair of lungs, trachea, kidneys, a small pancreas, endless intestines, gall bladder, esophagus, stomach, and the human heart. They went splashing into a metal bowel where some chemicals were added. The chest cavity was power-hosed out. The light made the chest wall almost transparent, glowing strangely. I thought it looked like a basket or a cage: ribcage. 

Each organ was biopsied and examined for abnormalities. Then the mortician began suturing the two halves of the young man’s abdomen and thorax together, all the while speaking to us casually. In the effort to reposition the corpse, he suddenly pulled him forward in the sink so that his neck, open and missing esophagus and trachea bent grotesquely backwards over the ledge of the basin. When the mortician had reached the thorax in his sutures he put the forceps and needle holders down, picked up the metal bowel of organs, and proceeded to dump them back into the thorax. He poured them in just like you might pour a pot of noodles into a strainer in the sink. The organs splashed around in their chemicals as they reentered the gutted out cavity. The mortician finished suturing the corpse all the way back to his chin. I looked around the room at the dead faces in basins. They were all young. Nobody above the age of 25 or so. On the floor I suspected the small bodies covered by a sheet were children. The mortician explained that they get about five fresh bodies for autopsy each day. Every patient who dies in hospital must be autopsied. They also get corpses from outside. As the mortician began on the next body, we had had enough. We left the morgue, that grim underworld, and stepped out into the equatorial sunshine above.

Mohammad showed me the pediatric ward, the HIV clinic where he will soon be working, and oncology. I felt very sad in the cancer ward as I always do. It was even harder for me to step into the cancer ward than it as the morgue. After a very extensive tour of Mulago Hospital we went out for Indian food. It was delicious. 

 I said goodbye to my friend Mohammad, who taught me so much, took me on call for nighttime emergencies, and kept company when we worked together on computers in the nursing school. Back at the house Sara and I went shopping for supplies we would bring to the party. Cheese, crackers, wine, beer, ginger snaps, and we were off. It was wonderful to see how nicely the expatriate and local communities mingle. This party was quite posh compared to the ones I had attended out in the village. Everyone was dressed smartly, hair styled in dreads or other fashionable looks. Kampala is a city of young professionals. 

 

Familiar Faces in Kampala

I wanted to buy this book, “Cutting for Stone”, that I began reading at Kagando but had to leave behind because it was not mine. Sara took me to the Oasis shopping mall where there is an enormous bookstore. My two favorite kinds of shopping in the whole world are: 1) books and 2) groceries. Actually all other shopping is stressful and somehow disturbing to me. When we were walking down the ramp in the mall I saw two very familiar Mzungu faces staring at me with a look of disbelief. It was my favorite surgeon, Uli, accompanied by the radiologist, Olga. They are both from Germany, working longterm at Kagando. Kagando is a day’s journey away by bus  and I was so surprised to see the two of them here in Kampala. We embraced and then went around together marveling at chocolate, nuts, biscuits, apples, and other things that you cannot find at Kagando.

That evening I met up with my medical intern friends, Mohammad and Shariff. Mohammad is Somalian and Shariff is Ethiopian. We went out to a cozy Ethiopian restaurant called Abinet. I drank some of the best coffee I had ever tasted. It was so good that I didn’t add a single drop of milk (unusual).

TB/Leprosy fieldtrip

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I I rose too early from my bed and was overcome by the awful feeling of nauseous fatigue. I rummaged around the Buluba guest house collecting my things that I had dispersed over the weekend around the room. I made an egg, ate a raw carrot, and marched with my pack and brief case over to the mess where I would be meeting the Sudanese health workers for the bus. We pilled into the bus when it finally arrived in front of the mess having stumbled over the branches and stones and piles of grass in the garden. Today I was accompanying the Sudanese on a TB/Leprosy field trip to Kampala to tour the National TB Referral Laboratory (NTRL) and the program headquarters. After a stuffy dusty bus ride  that effectively lulled all its occupants to sleep, we emerged at the NTRL in Kampala. I was embarrassed to find that no matter how hard I tried to stay alert, I would invariably nod off in each of the lectures we had to sit through. Maybe it was the lack of ventilation in the room, the early morning, the long bus ride, or because I had already learned a lot of this material in India. I hoped that nobody saw my narcolepsy but after the TB talk finally finished, one of the Sudanese guys pointed it out. I was really impressed with the group of Sudanese health workers (not just because they managed to stay awake when my eyelids refused to lift) but also because they were deeply serious and committed to their work even though they cannot practice in a normal health environment because of the political conflicts.

I said goodbye to my Sudanese friends and hopped on a boda boda motorcycle heading toward my friend Sara’s house.  I waited at the Little Donkey Mexican Restaurant for her children to take me to the house around the corner. While I waited I enjoyed a delicious burrito and I was surprised to discover that I had no desire for cheese. When the server asked if I would like cheese in my burrito I automatically said “no thanks”. Then I thought, this is weird, cheese used to be one of my favorite foods. I remembered a certain survey students had done at Bard about cheese and some sensitive subjects and at the time the thought of giving up cheese for almost anything was impossible. But now, nearly ten months without cheese has made me realize that it’s not important, and definitely not an essential part of my life. I think I would answer the survey much differently now. Back to the restaurant though: I saw three familiar Ugandan children marching up the hill. I smiled and waved at Sara’s kids, Innocent (15), Achai (10), and Charity (6).

TB/Leprosy Workshop

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I took care of some business things like making photo copies of the TB/Leprosy program that is currently running at Buluba Hospital and will continue off and on all year. I went to the OPD and Kenneth let me examine and write up patient reports under his guidance. This was reminiscent of my time in the Indian OPD, but here I was happy to receive guidance. I love taking patient history because it requires a special kind of listening. One in which you take things seriously that patients mention off-handedly, or subtly imbedded in other information. One patient mentioned that she wakes up in the mornings with swollen face and limbs after she spent much more time describing headaches, fevers, and night sweats. The edema (swelling) is a very important part of the history because it points to renal disfunction. This is a quality of listening much like listening to music. You must train your ear!

I then went to sit in on some of the classes being taught in the leprosy workshop with health coordinators from South Sudan.  It was really interesting to get the Sudanese perspective on leprosy. Apparently it is more of an issue there than in Uganda and access to health is limited because of the war. Northern Uganda and South Sudan are affected by the war in Sudan. Joseph Kony (LRA leader) brought so much suffering and fear to these people. He has not yet been found and is thought to be hiding in Central African Republic. He recruited child soldiers, murdered, raped, and claimed goods because he was trying to appease “the spirits” or was somehow led by “the spirits”. One of the Sudanese health workers told me his nephew was taken and spent 7 years in Kony’s LRA. He was only recently released and is now in a rehabilitation program.  So the health infrastructure in these areas is poor, allowing for persistence of leprosy. In particular,  health workers don’t know how to recognize and treat leprosy because they are either under-trained or the education just doesn’t include leprosy in the course topics. In the TB/Leprosy workshop class, Dr. Kawuma taught us about eye involvement in leprosy and prevention of disability. These health workers will bring this knowledge back to their regions and teach other health workers. It is an excellent strategy: train teachers. After class was finished we ate lunch together in the break room.

I went to the orthopedic department to check on the status of my patients’ artificial limbs. They were just being measured so I watched as the orthopedic practitioner made cast measurements of the leg stumps and explained how theses legs would be made and comfortably fitted. The practitioner was so kind and so concerned about these patients. He said to Michael, ” My good man, we are in the 21st century, you will walk out of here with a fine leg. No more tying rags around there like that”. I ilk what he said so much that I whipped out my journal so that i could remember his words. It was fun being with the four PALs to be fitted for legs because now that we have lived in the west at Kagando Hospital speaking Lukonzo , road-tripped across Uganda, and come to this foreign hospital at Buluba, we felt very close, like family. Just saying greetings in Lukonzo with them made me feel like I was at home. But I  was also tremendously enjoying Buluba. I think I have been feeling different since my birthday. It is hard to articulate, a kind of peace that I feel about being out here (meaning out here in the world). I feel like I belong. In the 5 days I spent at Buluba I felt as though I belonged. I felt comfortable with staff, patients, and visiting health workers from Sudan. And this confidence in my place here brought people closer to me as well. I got to know some of the staff here in 5 days better than I came to know some staff at Kagando in 2.5 months. Hopefully this sense of belonging despite being new will stick with me because I still have a long way to go as a new person.

Attack by Robbers

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Kenneth, the medical officer, called me at 11pm saying a patient had come in and could I go to the urgent care center “now now”. I said yes and crept through the night over the chopped branches of the ancient trees, down the long dirt road to the main hospital gate. The moon was full, casting eery light over the road, the field,  the mango tree groves, the lake, the rectangular hospital buildings. When I reached the main gate it was locked. The guard walked painfully slowly, one small shuffle after another towards me. Finally he unlocked the heavy padlocks and asked:  “But aren’t you scared to walk alone at night?” “No,” I replied, “I don’t get scared,” unaware that in a few hours I would indeed be scared. The patient was bleeding profusely from his head. Blood was pooling and congealing beneath him. His striped T-shirt was soaked. Blood was pouring down onto the floor, gushing out of him despite the bandages the nurse wrapped tightly around his head. Scalp lacerations bleed severely because there is so much vascular supply to the head. They told me he had been attacked by robbers on this road. He was a boda boda driver.

In my head I was reciting the emergency management I had learned at Kagando hospital. I wanted to obtain his vital signs, palpate for skull fractures, determine his Glasgow Coma Scale (GCS: level of consciousness for head injury), administer mannitol if he show signs leading to cerebral edema, provide oxygen, measure oxygen saturation, transfuse him with blood to replace the volume he lost, consider saline or ringers lactate fluids depending upon the cerebral edema, and elevate his head. The familiar sense of “why can’t I fast-forward in my life ten years right now so that I know what to do with this patient and am in a position to provide care?” I was concerned with his management because it was so different from what I had been taught at Kagando. The primary concerns according to the staff here were not systemic things like vitals or query cerebral edema but rather washing and suturing his wounds. I understood that the bleeding needed to be stopped but I did not understand the prioritizing system.

We took him into the theater. Slowly slowly his wounds were closed. As the surgical technician administered local anesthesia to the scalp wounds,  blood and lignocaine spurted across the room, showering our faces with tiny specks. I did not feel any fluid go into my eyes and I was wearing my glasses as a shield, but I worried that there might have been contamination. I took off my gloves and hurried to the break room. I wanted to find a mirror to see where the splashes had gone but there was none present. I washed my face, still thinking nothing had splashed into my eyes. I should have rinsed my eyes out for 10 minutes but in that moment I had made a decision not to and reentered the operating theater. As I stood holding the writhing patient I began to fear that some of the splashes might have gone into my eyes. Dark clouds moved into my brain and settled:  what if he is HIV+, Hep C? Hep B? I confided in Kenneth, who didn’t seem too concerned himself but understood that I was worried.  We resolved to test our patient after he was stable. So that night at 1 AM we tested him and waited the 30 minutes for the result. Negative. Even though my risk was low to begin with (I wasn’t even sure that anything got in my eye and even if it did the risk is 0.3%) I was overcome with relief at the result. Kenneth was relieved as well, although he told me that you get used to this kind of risk, and if you get a positive, you take PEP for one month. It was scary but I am now confident that we were not exposed (we also retested him the following day, also negative).

Walking back to the guest house was scary in light of the attack by robbers. We walked swiftly, as a group and directly to our respective houses. Kenneth and the nurse saw me to my door for which I was so thankful.

March of the Patients

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I ate lunch with the Sudanese health workers and I laughed almost the entire time because they were so witty and humorous. I went to give banana treats to the four leprosy patents we brought here from Kagando. We sat on one of the beds chatting. I have come to know each of them and really enjoy their company. We made plans to walk to the lake that evening. They said it is a beautiful trek and we might be able to watch the fishermen bring in the nets. That evening I was late and tired coming back from town and the four patients had already set off on their crutches into the sunset to reach the lake shore. I called Salim when I arrived at their room in the ward and it was empty. Salim told me they were just turning back from the beach and that “there were no fishees”. After I hung up the phone I sort just stood for a second in awe of these patients. These are people who only have one leg. They have jerry-rigged legs for themselves out of wood, rags, and plastic. We have brought them all the way across Uganda so that they can get proper comfortable artificial limbs. I was amazed by their motility and agency even before they get the fancy new legs. These patients are explorers who let nothing get in their way. Wishing I had been with them, I imagined the four patients marching along to the beach with crutches and prosthetic legs slowly but resolutely. I have been hobbling around myself because of a stress injury to the tendons in my left ankle. I can hardly weight bare, and interesting coincidence here  at Buluba Hospital.

Monkeys

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Monkeys fall from the sky and die. This morning I woke up in the Buluba Hospital guesthouse to the sound of a buzz saw. I stepped outside to see what was going on. To my great horror, the enormous ancient eucalyptus tree that I had admired yesterday was in pieces on the ground around its butchered trunk like a morbid meat factory. What are you doing! I wanted to shout. Instead I approached the lumberjacks quietly. When I came to the tree stump I saw a horrible sight. Two baby monkeys were tethered with rough twine about the abdomen to a leafy bush. They were so traumatized that they refused to open their eyes to the noise and commotion. Their eyelids are white and almost shiny so that at first glance you think the eyes are blind and open. I would have closed my eyes as well. The small monkeys closed their eyes to the piece by piece destruction of their home. It was torture. Moreover, their parents had fallen from the tree as it crashed to the ground. They were crushed to death beneath their fallen home. I asked what the men were doing with the baby monkeys. They told me they were going to bring them home and care for them as pets until they got big. And then what? Eat them! I didn’t know what to do. Should I untie this small traumatized creatures and let them go? Should I buy them from the men and set them free? But where will they go. How will they live in the wild after their home and parents have been destroyed and after they have suffered such a shock? I decided that I would not act now. I would think about it.

I left the monkey torture sight fraught with concern: what is the right thing to do? I dwelled upon this all morning and when I came back to the place where the tree had stood I had still failed to reach a resolution. When I reached the stump, the baby monkeys and lumberjacks were gone.

The Source of the Nile

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I remember the story I learned in 2nd grade of Moses being placed in a rush basket and pushed out into the river Nile by his own mother who feared he would be killed by the Egyptian Pharaoh. The story came alive in my mind as I surveyed the source of the River Nile at the mouth of Lake Victoria. This river, flowing from Lake Victoria south-to-north through Egypt where Moses was set to sail is broad, lined with rushes and tall grasses, and fast-moving. The edges have spilled over into farm land and homes. I traveled here by motorcycle from Buluba hospital. 

I went with Henry, a medical officer, and Moses (coincidentally) a Sudanese health worker taking part in the TB/Leprosy program currently running at Buluba Hospital. We squeezed onto motorcycles (boda bodas), riding through the meadows and hills of the Jinga Nile basin region. We crammed into Matatus, vans like the Taxi Brousses in Madagascar. I was impressed by the teenager whose job it was to get people in and out of the van and negotiate payment. He was very serious. At one point an argument arose in English among several passengers and this young van employee. The passengers were furious that the van boy hadn’t told them the fare was 1500 USH. They called him a “fake”. One said:  “you are not even a real person”. Another said: “But look, he is breathing, he must be real,” as if what the previous one had said was literal. I found this issue of the van boy being real or not an interesting response to the said overly expensive fare. Moses and I just smiled and kept quiet but Henry tried to mediate things. “He is just doing his job” Henry said, pointing to the van boy. Finally the van stopped and the discontented passengers got off. We enjoyed the ensuing peace. 

 We dismounted in Jinga. This city is frankly weird. There are many old crumbling buildings from the 1920’s several of which have the words “this building is not for sale” written across them in bold letters. Ugandan’s tend to write things out in full sentences–even notices, advertisements, and traffic signs! Another example is at the Nile’s edge. The sign reads: “It is dangerous beyond this point”.  Similarly, in conversation when you ask someone how they are doing, they will either say: “I am fine” or “I am not OK,” always a complete sentences, no fragments. Perhaps this says something about the culture. It is filled with very strong individuals who can stand alone–no fragments. These people can do everything for themselves: they know how to plant and dig their own crops, build their own huts, weave the nets to catch the fish, repair a bicycle. But there is also a sense of togetherness and social co-dependency. One time Jackson the occupational therapist told me: “we Ugandans, we stick together and look out for each other. If I went to your country and I met another man from Uganda I would call him my brother and  invite him into my home”. I asked why Jackson thinks Ugandans are like this. He explained that it is through shared suffering that people realized the most valuable thing they have is each other. Out here in the bush people struggle in their labor, struggle to send their children to school, struggle to pay for medical bills, they have struggled through the wars and terrors of Idi Amin, Obote, and King Charles Wesley the 3rd (Rwenzori King of the 1970s).  Through this suffering and dearth of material things the value of relationships is elevated, celebrated, cherished so much so that even an outsider such as myself can appreciate the strength of Ugandan relationships. 

 Back to the Nile. It is a significant spot and despite the vendors that have flocked to the shores of the river seeking tourists, standing at the source of the longest river in Africa, the one with so much biblical significance, felt significant.

Road Trip with PALs to Buluba

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I never went to sleep. As I packed up my room at Clay House I felt sad to be leaving such a beautiful part of the world and such a loving community of people. I knew I would miss the warmth and protection I felt by the village children during my evening runs. I would miss the Lukonzo language, in which the word “Thank You” is spoken more than any other word: Thank you for your work = “wasinga ericola” thank you for thanking me= Wasinga eriseema”  thank you very much = “wasinga kutsebo”. I would also miss the expression: “Wabecheeri”, how was the night, and “esveeri,” how was the day. But it was time to move on. And I would be moving with four leprosy patients. The occupational therapist, Jackson, and I were going to take the four patients to Buluba Hospital for prosthetic limbs! A road trip across the country for legs. We joked that they wouldn’t need a return trip because they could walk back. 

The night grew later and later and still my things were scattered all over the room. I had begun painting a picture for the medical electives who would remain at Kagando and whom I had grown to really appreciate. 4:30 AM struck and I shoved everything into the pack and walked down the Kagando hill for the last time. At the gate I found Jackson and the ambulance containing the four patients. I stepped inside and realized how different this ambulance is from the ones I used to ride in High School in the State of Maryland. This one also might have been from the 1970s, so it could just be a difference in era. 

We sped down the dirt road toward Kibarara trading post. There we dismounted, piled our things together on the ground (I note that the pile included several rudimentary artificial limbs), and waited in the darkness and stillness for the bus to arrive. After about 45 minutes I heard a roaring sound coming from direction Bwera. Then headlights at top speed careening down the road. Suddenly the bus was right in front of us, seemingly inches away from our pile of things. It screetched to a halt like the night bus in the Harry Potter series and we were whisked onto the thing within seconds.  As briskly as it had stopped for us, the bus was speeding down the paved road toward Kikorongo. The motion of the bus (besides potholes) was soothing and I nodded off one million times, waking up each time with my skull dangling backwards awkwardly. I joined the patients in their row of seats at the back of the bus. We chatted and shared this book about “self-forgetfulness” with each other.  It was fun being in the back with my friends as friends and not seeing them as patients. As the bus approached Kampala it steadily became fuller until at one point a youngish girl had no seat at all and I invited her to sit on my lap. She sat without saying a word which made me think she was terrified of my Mzungo (white person) self. Some children in the village fear Mzungos because we look like ghosts and they believe us to be evil spirits capable of cursing and sending bad luck to them. This is not entirely inaccurate historically. After Vasco De Gama  and his Mzungo confidants reached deep into Uganda’s countryside ripping children and adults out as slaves in Europe or other European territories, I can understand why the Mzungu is feared.

After 12 hours of hot, sticky, loud, dirty, crowded bus travel, we reached Kampala. It was difficult for the patients to maneuver getting off the bus with their luggage so I gave a hand, picking up some plastic bags and a fake leg. People gave me the weirdest looks as I carried the fake leg around. It must be hard to have a visible deformity not just because of the physical restriction but also the social reception of that deformity. We waited in the bus park guarding our pile of stuff and legs as Jackson went all over Kampala looking for a Matatu that could take us the 3 hour journey to Buluba Hospital. We boarded and I sat next to Salim, one of the patients who speaks English. He got into the most interesting conversation about Museveni with his neighbor on the left. Leprosy dissolved on this Matatu ride. Maybe I am too hyper-focused on the issue of leprosy that I impose its significance on everything, but I thought it was really significant to see Salim in a completely non-leprosy context chatting with his neighbor on the bus about the president. Two men talking politics. 

We got off the Matatu at Mosita, a large trading post that wreaked of alcohol and felt unsafe. 18 wheeler trucks roared past the trading post on the highway. Men on motorcycles tried to catch our attention. The spaces in between shops were pitch-dark. The ground was covered in trash. There were prostitutes and homeless children and drunk men and cool teenagers strutting around. We bought dinner in plastic bags to bring to the hospital and booked it.

Dinner with my Tailor

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This was my last day at Kagando Hospital and in the Rwenzori mountain community. I was very sad to leave. I had grown quite close to my tailor, Mama Colini, who has fashioned many colorful hospital-appropriate African outfits for me. Over the months I would visit her at the shop, tired from the long walk in the sun, and she would say “lie down, have a rest”. I would go to the back of the shop and plop down on the mattress and have a good rest. Sometimes we would talk politics, share Matooke and beans, or watch historic Ugandan TV. On this day Mama Colini was finishing up a shirt and dress for me as I sat in her shop feeling horribly melancholic. Mama Colini is such a wise and strong woman.

After she finished and darkness was just closing in around Kisinga market, Mama Colini, her son, Colin, and I set off on boda bodas for her house where we were going to have dinner together. They have a large plot of land with all the local crops. They also have a wonderful house that feels homey and soft the minute you enter. I stepped into the candle-lit living room and melted into one of the couches surrounding a coffee table. The living room is essentially all couch and can thus accommodate a family of 11. Mama Colini was busy slaughtering a chicken and preparing bundu, so I spoke with her oldest son and namesake, Colin. Slowly the room filled up with children. They just kept trickling in from the darkness beyond the threshold of the door. I gave them all lollypops and cookies and we flipped through family photos together. A few hours later, dinner was ready and I got to eat with Mama Colini and share stories. She told me she came from Congo, grew up in the villages and never went to school. She paid a man to teach her how to sew and he taught her well. Then she met Baba Colini and moved over to Uganda and opened a hotel (small restaurant). She began having babies and wasn’t sure why they kept coming. She taught herself how to read and how to speak English. She then opened a tailor shop as her family continued to grow. I was so surprised by her lack of formal education because in our conversations she is always telling me about the news, debating ethical issues, providing insight about things I thought you could only get in school. After a delicious meal, Mama Colini and I boarded boda bodas and set off toward the hospital. She would continue further to her shop because she had to pull an all-nighter to prepare an order for a client by tomorrow. I was so sad to see her go. Part of me wanted to stay on the boda and spend the night in her shop as her sewing machine whirred and she told me things. But I knew I had to pack my room and time was short. I said goodbye but with a real conviction that I will see her again someday. 

Birthday (May 21st)

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It was my birthday and I woke up in a pleasant mood. Somehow that remained with me all day. For the first time on my birthday I felt the full weight of birthday, another year on this planet, and how fortunate am I to be a year older. I bought loads of Mandasi (fried dough) to hand out to hospital staff for my birthday. In Uganda celebration happens in reverse. The birthday person shares something special to eat or gifts with friends.  In the morning I shared banana pancakes with all of the medical electives. But in the evening, western birthday celebration caught me by surprise: the medical electives (all 15 of them) had marched down to the river with cake, sodas, cookies, chocolate sauce, chopped fruits, and cards to intercept my evening run and surprise me. It was wonderful. I felt so touched and thoroughly enjoyed the celebration. I am still having a “surprise birthday streak”– High School, College, and Watson years have all been marked by surprise birthday parties (sometimes more than one in the same year!). I am in huge surprise party debt. I think this needs to be resolved in whosoever birthday comes next (provided we are in the same country). 

King Fisher Safari and Kasese Beer

I went with the German orthopedic surgeon, the British medical students, and the Ugandan male midwife to the King Fisher safari swimming pool that brims over the sea of savannah below. I didn’t feel like swimming so I just read by the pool. We ate fresh foods (vegetable and fruits that have not been DEEP FRIED!?)

Then I boarded a bus and sloped down the mountain through the savannah valley to Kasese. An elephant crossed the road on the way. I had planned to meet the four Belgian nurses in Kasese for a beer. Beer inside the gates of a christian hospital is unthinkable. Similarly, sharing a beer with the christian medical students or Ugandan staff is unthinkable. We (the “heathens”) felt sort of guilty drinking a beer, but it was a much needed break. Conformity is important in the hospital community but you need to take some breaks (secretly).

River Beach

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The sun was already beating down on the hospital, sucking the moisture out of the soggy earth into the bright sky. I bought two small cakes, two bananas, and filled up two water bottles. I met Viola, the physiotherapist’s assistant, by the main get. We were off. We moved through Kagando trading post, weaving between the mud shacks filled with wrapper foods and fruits and avocados. We walked up the hill under the cover of banana, papaya, and eucalyptus trees to the spot on the summit where the ladies always sell dried fish, unrefined palm oil in plastic bags, and banana pancakes. The descent was long. We had to lose all the hospital’s altitude to reach the low-lying river. It looks like a lazy snake from up there, but down at the water’s edge there was nothing lazy about the river. The Kilembe floods had swept the bridge away and the villagers had improvised a new one built 15 feet in the sky out of huge logs. It was precarious and most people chose to ford the river instead of crossing via the high bridge. We rolled up our pants and felt the coolness of the rushing water. After our picnic on the beach two boys from the nursing school appeared. They told us they were going to a burial in the village on the other side of the river. We asked if we could accompany them there and they agreed. 

I could tell we were drawing near because hundreds of villagers were gathered in the garden and road outside a small hut. From the hut I heard the wailing of loss I have grown accustomed to at the hospital. Men carried low-lying wooden benches into the garden so that people would not have to sit in the dirt with the beans and sweet potatoes. I thought the man who got up to speak was the pastor giving the funeral service, but I soon realized he was a police officer. Viola and Peter translated for me as the man spoke. The man who died was a poacher. He hunted Ugandan cob, elephants and buffalo in Queen Elizabeth National Park. The officer was accusing the villages of hiding this hunter. The officer blamed the community for the death because he argued that had the police known of his whereabouts, he would have been taken to a prison safely, instead of being butchered on the road by rival hunters. Apparently the some hunters had come to this hut in the night and the wife thought her husband was being called for a hunting mission, so she was not alarmed when they took him. But he never came back. The hunters brought him some distance and then killed him with pangas (machetes)  and left him on the roadside. The police officer addressed the grieving villagers like this and then announced that there would be no burial today, but they should come back tomorrow. 

We walked back to Kagando discussing this and the underlying problems in the community. Job scarcity, a community in which relationship is at the core. Living in the village is not like the west precisely because of this. Western society does not run on relationships like here. Just one example, we do not have shop loyalty because our grocer is a computer or else a number in a row of checkout lines. But here the economy is built on relationships. Families, neighbors, friends, elders. People connecting with each other and fulfilling roles for one another. It isn’t that this area is dangerous or violent for everyone. This murder was a result of a failed relationship. It was not random. 

 

local PAL support group in Bwera (May 16th)

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Everything fell into place smoothly. We were heading out on our leprosy outreach and had somehow secured a vehicle, petrol funds, permission from the hospital administration, the occupational therapist, the road snacks by 10:00 AM. We piled into the vehicle moving in direction Bwera when suddenly I realized our promptness (record speed for leprosy outreach preparation) was too good to be true. We had forgotten Salim, our resident leprosy patient who was going to lead our workshop for the day. We searched the hospital, the local town, the shops right outside the hospital, but Salim was nowhere to be found.  We waited for one hour before he appeared out of nowhere on the bench outside the hospital gates. I sat in the back of the pickup truck, bouncing somewhat painfully in the metal truck bed as we sped down the dirt road.  The equatorial sun poured into every cell on my face. The wind grasped my hair, pulling it in every direction, obscuring my view of the savannah. Our group consisted of the driver, Jackson the occupational therapist, Salim, Jackson #2 the hospital’s janitor who was affected by leprosy, and Marina, a young volunteer from England. We arrived in Bwera, a small town right on the border of Congo. I looked across the small stream that separates Uganda from the war-torn country of Congo and I was surprised to see that the landscape right across the border is actually different. I saw plantations, lush fields of green, and towering hotels, while our side was much more bush, mud and stick huts and scrubby mountains. Salim led us to the meeting place for the group he had founded: the Association for People Affected by Leprosy, located in a tailor’s shop.

There were many people affected by leprosy (PALs) gathered inside the shop sitting on tightly cramped benches. The community based rehabilitation expert, Paul, and Salim gave introductory speeches. Then the PALs introduced themselves. Many old patients wanted to be examined and there were several suspect new leprosy cases to assess. We palpated nerves, talked to patients, and planned another trip to see their vocational skills sharing. After the meeting was finished, Paul gave each of us a banana and a plastic water bottle. Then he guided us on tour of the border town. It is a strange place. Huge mansions towering over their impressive stone walls juxtapose neighboring huts built out of sticks and mud. These are the homes of business men, we learned. We piled back into the truck         with bright yellow sunshine that made the metal too hot to touch with bare hands. Along the way back to the hospital we stopped at a row of modest huts on the side of the road. It was  Salim’s family’s land. He has nine children and from them dozens of grandchildren. We met about two dozen members of his immediate family. We sat in his mud and stick hut enjoying the hospitality of his people. It was beautiful. I have grown so accustomed to being invited into people’s huts and experiencing the generosity of this culture.

Physiotherapy

I have been spending a lot of my time in physiotherapy with viola and Ken. I really enjoy the hands on work with patients and the improvement you see after one week of daily exercises. My favorite patient his a mysterious neurodegeneracy and severe muscle wasting but he is the happiest patient I have ever seen. He is enormous, so big that for a while we thought he might have acromegaly (growth hormone over-production). His figure is stooped and teddybear-like.  We give him electric shock therapy to stimulate his muscles. While most patients flinch at the pain, he thinks it is ticklish and he giggles uncontrollably. 

Hike into the Rwenzori Forest

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Hike into Rwenzori forest..

Orphanage (May 14th)

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We visited the local orphanage and received the warmest welcome I have ever experienced.  The children had written songs for us using our names. They also created a dance routine. I was blown away. 

 

Internal Fixation (May 6th)

I observed an internal fixation of the femur. The nail is actually hammered into the bone after a small space is made with a screw. It is barbaric and reminds me not of medicine, but carpentry. However, this method of immobilizing a fractured bone is still performed with some success today. 

 

Bundu Fridays and Ugandan Dance Party

On Fridays Doris and Justine, our wonderful cooks, make Bundu for us. This is a traditional meal of cassava flour dough that is dipped into meat sauce or beans and swallowed in small-large hunks. I cannot eat it this way (must chew!) but I enjoy the meal immensely as it is a special Mukonzo (local tribe) treat. We all reach into the same pot to pull apart a piece of the sticky cassava dough, then dip in the sauce and enjoy. My other favorite Ugandan dish is called Matooke. This is mashed boiled bananas that can be eaten with chili sauce. India has made a permanent impression on my taste preference such that I now have the attitude that if it is not spicy, it is not worth it. Everything savory must be appropriately spicy. 

As our fingers became sticky with Bundu we could hear a base pulsing from somewhere down the hill. It’s the nursing school party tonight someone announced. I made my way through the evening down the hill to the nursing quarters. Sure enough there was a boisterous party. Hundreds of students all gathered together in and outside of one of the common areas dancing. The music was traditional, the dancing amazing, and the students welcoming. I realized how rubbish my dancing skills are in a genre of music that is completely new to me. Besides standing out because of my Mzungu (white person) appearance, I stood out even more because of my failure to move like everyone else in the hall. Part of me just wanted to stare at everyone, amazed by how they isolated muscles to create the most intricate movements to the music, and the other part was eager to jump in and be carried away by the music. I jumped in but was definitely not carried away by the music. While others moved like water all around  me, I flopped around like a beached whale, but I didn’t care. Nobody cared, everyone just enjoyed.

 

Leprosy Outreach: Sustainable rehabilitation project (May 2nd)

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It took forever to organize the vehicle for our leprosy outreach program. I got into the Prado with Jackson and some others. At each PAL’s house (PAL= person affected with leprosy) Jackson managed to procure something— a seedling, a sapling, a cow leg. He pulled these out from under the car seat when he got out back at the hospital. Jackson is very thorough with his patients. One PAL to whom he had given a goat claimed his relatives had stolen the goat, so Jackson has planned a program to retrieve the goat. As we moved from PAL hut to hut in the outreach random village kids piled into the car to direct us. Salim, our hospital PAL, knows all of the addresses and comes with us to help find the PAL places. We went to Michael’s house (Michael is also one of our ward patients) because Jackson had heard that his house is in disarray. When we arrived, Michael had been out trying to collect sticks from neighbors to build his home.

We drove to one more PAL home. Jackson got out of the car to discuss rehabilitation on chairs in front of the house. When we got back to the hospital and dropped Jackson off at his house he rummaged around in the back seat for something. He procured first one green sapling, then another green sapling, and lastly, a cow’s whole leg. what? I laughed and smiled

Running Through The Thick of It (May 1st)

May 1st is a national holiday in Uganda. People in the villages gather- hundreds of them- and march down the dirt roads singing and chanting. I happened to be on my evening run when I realized I was the in the middle of their parade. I thought at first I should turn back, too many people, an impenetrable crowd, but something compelled me into the heart of the people. As I approached the wall of people moving toward me, suddenly a small path was made as people parted. Shoulders touching, I ran through the throngs of singing people. They touched my head, cheered me on, smiled, waved, laughed, and made me feel more alive than I have felt in my entire life. For 800 meters I moved through the red sea of people. 

Farewell Party for Staff

Today, May 1st, was a special day because for Uganda it was a national holiday and for Kagando it was the day of the staff farewell party. I was sad to have to say goodbye to my Somalian and Ethiopian friends who have finished their internships here. The party itself was a fun experience. It was very traditional. There were long-winded speeches, mysteriously heavy gifts wrapped in silver paper for the departing staffs, and traditional foods doled out onto every guest’s plate (meat, cabbage, a banana). After enjoying our meal, we looked about alarmed to hear the party noises had ceased. Doctors were whispering anxiously with one another. Something serious had happened.

“What’s going on, I asked?”

“Kilembe Mines Hospital has flooded!” a doctor told me.

We heard that the river came right up to the hospital and washed it away. There was a rumor that two nurses had been killed. The patients were being transferred to our hospital and other neighboring health clinics. Many doctors left the party in haste, jogging to the hospital vehicles and speeding down the road for their disaster relief duties.

I was shocked by this news. I had made arrangements with Kilembe Hospital to come and live as a volunteer for a few weeks. I was meant to be there today but I had delayed my transfer because I wanted to go to the staff goodbye party. As doctors jumped into jeeps and zoomed off I wanted to go with them; I wanted to help. But I knew that at my level of training (or lack there of) I would be more of a burden than a help in the relief effort, so I stayed behind. I called Sister Theresa with whom I had made the arrangements to be a volunteer at Kilembe and told her I would be willing to help in any capacity in the next weeks. She said she would notify me if I could be useful.

I went down to the ward. I recognized some of the patients who had originally come to Kagando and then were transferred to Kilembe, but were now back again because of the disaster.  Patient refugees. The surgical ward, male, and female wards filled up with shell-shocked patients.

I am deeply disappointed about the destruction of the Kilembe Hospital not only because of the patients it has displaced, or the tragic injuries and deaths, or my plans to volunteer there being washed away, but also because Kilembe was a really good underserved rural hospital. It was a model for how hospitals can be successful even in limited resource settings. The reason I wanted to work on my project at Kilembe was because I wanted to understand how this hospital was successful. During my visit the previous week I noticed that the staff attitudes were incredibly positive, hard-working, and dedicated. In surgery when the surgeon would say “gauze” surgical technicians would run for it, not a second of delay. Our hospital is sleeping by comparison.  I really hope Kilembe can be rebuilt to its former glory.

RAIN! May 1st

Rain! We are in Rwenzori rainy season. We had to cancel the leprosy outreach for today and hide out in the OPD to stay safe and dry. I received a Lukonzo lesson from the nursing staff. I first learned how to communicate introductions. After attempting at Lukonzo conversation, I sprinted through the downpour to the administration block to make arrangements for the leprosy outreach program the following day. 

Eye Clinic (April)

A morning of waking late. Breakfast. Ward round with Uli. We saw several patients, including one who had a gastrectomy, a victim of spinal gunshots, the lorry truck trauma case, a prostate cancer patients, a man with deep vein thrombosis, a pediatric patient with distended abdomen and urinary retention. We continued on to the leprosy ward round. The patients were really lovely and talkative today.  The one we rescued in our outreach several days ago is ambulatory now and has more color and moisture in his skin. I met with Jackson to arrange a long-term leprosy outreach program. I am very impressed with Jackson’s initiative. He really cares about the leprosy patients. 

After a morning in hospital I walked up the steep hill to Clay House (where I stay), gathered my money, and set off for Kisinga Market. I wanted to pick up my clothes from the tailor, Mama Colini, but she had not yet finished. I roamed around the market aimlessly, then walked quickly back, anticipating lunch which on Mondays is Rolex (chapati omelet). When I arrived at Clay House everyone was gathered at the table: Matt, Jonathan, Hilary, Jasmine, Vicky, Peter, and Ian. I like them all very much because they are very kind, caring, and intelligent medical students. As practicing christians they are very accepting of my agnosticism/searching state of being. After we finished our Rolex, Matt and Hilary and I went down to the hospital to see the eye clinic. Dr. Keith is a really intimidating consultant ophthalmologist. He has done a  great deal for eye care in Uganda (in fact, he became an ophthalmologist because when he was a medical elective here one hundred years ago he saw that there were absolutely no ophthalmologists in the whole country. During his consultations he may have been insensitive and rude to the patients  but it was very obvious to me that he knows a great deal and he is a good clinician.  I had the thought while I was shadowing him in the dimly lit eye room that I would want him to see me if I was a patient even if he is rude. I learned so much from him and I forgot a lot of it but what I remember is this:  

Child with Goldenhar Syndrome presented deformity in the ears, palate, nose, and had choristomas on the eyes. Theses are small islands of epithelial tissue called lipodermas growing on the sclera of the eyeball. I actually saw small small hairs growing out of this inappropriately placed skin patches. I have learned that when you see a syndrome child, and you notice visible abnormalities such as eyes, ears, nose, this is really just the surface, and you must suspect vital organ involvement- heart, kidneys, liver, lungs dysfunction. 

 Older man and school teacher presenting long hx of pigmentary retinopathy. This is a condition marked by retinal degeneration and the patient experiences night blindness. That’s because cones (color vision) are somehow spared or at least not as rapidly destroyed as rods (light and dark, depth perception, etc). 

 A teenage girl with myasthenia gravis. This autoimmune condition prevents the patient from keeping her eyelids open because it causes weakening of the muscles that lift the eyelid. Interestingly, it is the circulating antibodies that inhibit acetylcholine from producing an excitatory impulse in the muscle. The receptor is blocked by the patients own overly active immune system. Management for this patient in a surgery that stitches the eyelid to the muscle we use to raise the eyebrow. I thought this was particularly suiting in Uganda where so much of the language in the form of eyebrow wiggling. 

 We saw many patients with glaucoma. Basically glaucoma puts intraocular pressure on optic disc, attenuating vascular supply to nerves. Nerves die and the cup gets bigger and the shape changes so that the patient experiences degenerating vision as the optic nerves become dysfunctional. Most cases present chronic glaucoma from hypertension (HTN: high blood pressure) as opposed to acute (I don’t know how you get acute glaucoma). 

I learned how to elicit the red pigment reflex. It’s cool- you shine a light in someones eye and look for the flash of red. It should be there. 

I saw another patient with pterygium (muscle covering the sclera). He would have it surgically repaired. 

Another patient presented conjunctival carcinoma. It is very important to distinguish this from simple iritis and Dr. Keith can detect the subtle differences from a mile away. Yet another patient with HTN and consequent glaucoma had severe trigeminal nerve pain (that’s the nerve that supplies the cornea). The treatment for her would be to inhibit trigeminal nerve. There is no cure because her case is so advanced. 

Finally, we visited the lorry truck trauma patient and I felt very strongly that his bandage (which was tight and packed over his face) should be removed. But I am not a doctor and the real doctors had decided to leave it.

As Dr. Keith quickly moved through dozens of patients we spoke about the history of leprosy in Uganda. Dr. Keith is responsible for the big elimination push because he was the one who pioneered the outreach approach which is highly effective in the villages. He told me that when he first came to Uganda in the 1970s they diagnosed about 3500 new leprosy cases each year. Now that number (as of 2011) is 265. 

Eye Clinic

The Nseny headmaster called me while I was in a meeting with the leprosy specialist in his office. “We are here,” he said.  Yesterday, during my trek into the Rwenzoris I met many people in villages and mountain schools and I told them about the free eye clinic that is taking place at Kagando. I saw a young girl with molluscum (viral warty infection) and a lesion at the lid margin causing inflammation in her eye. She had come all the way to the eye clinic to be reviewed for surgical removal of the warts and treatment. I watched her become sedated with ketamine and each mole popped, scooped out, and snipped. Done! And all for free. This is the great thing about medical camps: this girl will go back to her village without the painful viral lesion causing inflammation in her eye and without having spent any money. 

Eyes on the Mountains

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I climbed up into the mountains wanting to move, breathe fresh cool air, and look over the peaks toward Sudan and the beautiful Queen Elizabeth vista stretching out below. I headed straight up (the path is almost vertical) toward the entrance to the Rwenzori forest. Along the way, children delighted me with smiles and shouts of joy. I am going to have such a difficult time back in America where kids by comparison suffer from tremendous indifference. Way up in the peaks, right at the entrance to the Rwenzori forest there is a small school of 19 pupils. I met the school teacher when I peeped into a classroom I was passing. He urged me to come inside and greet the class. After class had ended I said I wanted to enter the enchanted Rwenzori forest before I turned around to go back to Kagando Hospital. He accompanied me. On the way he told me that the forest is filled with the “poor man’s” medicine. He said they scrape the bark off pine trees, boil it, and drink the tea to treat malaria. 

 When we emerged from the forest a teenage boy caught my eye. In fact, it was his eye that caught mine because it was blue and grossly enlarged. I remembered that this week is surgical eye camp at Kagando so all examinations and procedures are performed free of charge by an internationally renown ophthalmologist. The school teacher, Paul was his name, translated as I asked the boy questions about his history. He told me he was born with the murky, large blue left eye but that his right eye was degenerating. Slowly people emerged out of the woodwork complaining of different eye conditions: iritis (red and inflamed sclera), glaucoma (intraocular pressure on optic disc), night blindness, age-related hyperopia.  I explained that I am not a doctor and I don’t know how to treat any of the conditions I saw but if everyone who had eye complaints walked down the mountain to Kagando tomorrow, they could be seen by Dr. Keith. The school teacher was elated and said these three will come together and more as well. 

 I said goodbye to the eye people and made my way down the twisted paths leading to Kagando. I felt happy and embraced even though I walked alone. These mountains are full of such loving people and even in the briefest of interactions this comes across powerfully. I think I will come and live in this part of the world for that reason. 

Wambali’s Gift: Sunday April 28th

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I suddenly felt a warm squishy hand in mine as I walked up the dirt road leading to the Catholic parish on the hill. An image of Sumit flashed into my mind: I remembered marching proudly around the hospital compound in India with his little hand clasped in mine. I remembered how he used to say “pyano” screwing up his face, jutting his fingers out in the air and wiggling them whenever he saw me. I remembered the smile that used to spread across his steroid-bloated full moon face when I would said “yes, piano”. Then I remembered with a shock of pain that Sumit has died. These memories flashed before my eyes in the few seconds it took me turn my head and find the body to which the little hand belonged. It was a young boy, shaved head, big round tummy, floppy arms, and the characteristic eyes of syndrome. I looked into these big round eyes– little globes that at first glance appeared dull but upon closer inspection I could see a world of expression. 

He tugged my hand in his chubby floppy one over to his chest right above his heart. “waboucheri” I said. “it is OK” he replied in a small gruff voice. We walked on. I felt compelled to sing the song that I used to sing with Sumit when we walked: “Chanda mama durikee, pooh apa gya orikee, apa kya thali mae, moonakededo pyalimae”.  My young friend looked ahead with determination as I sang. In this moment I felt closest to Sumit since his death. Tears came to my eyes because I was really feeling, which is something that has been difficult for me to do so far from the places where these tragedies have unfolded. What is your name, I asked. “It’s OK,”  he said.  I tried something else. I pointed to my chest and said: “Bira Daniela” (“Bira” means second born daughter in Lukonzo). “Wambali Joel,” he said seriously. We walked on in silence for some time. He offered me a gift of the last Mandasi crumb (he had been eating this pastry and wanted me to have the last bite). I took it, not wanting to eat the soggy little morsel but knowing I had to. After I had finished it and thanked Wambali, I to surprise him with something, so I whistled my special bird wobble call. It had the effect I was hoping for: Wambali looked around wildly, searching the sky, trees, and cassava plantations lining the road. I did it again. This time he located it and looked straight up into my face. He smiled. Such a sweet, kind smile. 

That afternoon Wambali took me to his village and introduced me to his teachers, neighbors, and relatives. He led me door-to-door by the hand. Everyone smiled warmly and greeted us in Lukonzo. Having learned basic greetings in Lukonzo, I was happy to share these with Wambali’s community, especially seeing their surprise and excitement. Wambali pointed to a short stool outside his house, indicating for me to sit down. I sat and greeted his mother, offering her the banana that I had been carrying in my free hand. Wambali’s mother, who spoke some English explained to me that she had 7 children. I asked her if Wambali could come along with me up the hill to Nsenyi school at the catholic parish.  

When Wambali and I arrived we could hear drums beating and children singing in unison. We quickened our pace, excited to find out what was going on. There was a ring of school children dressed in their Sunday best, dancing to the rhythm of drums beat by an older man, presumably a school teacher. They were singing songs of praise in a mixture of English and Lukonzo. When they noticed me and Wambali standing and staring, they invited us to join them and watch the performance. “You are most welcome,” the head master exclaimed. Wambali had been wearing my sunglasses and I got the impression that the other children didn’t notice he was special. Mostly the school kids were ogling at me. But then when Wambali took off his glasses and spoke in his little gruff voice I noticed a change in how the other children looked at him. At first they recoiled, then giggled, then completely, fully, and lovingly embraced him. I wondered how many syndrome babies are born in these rural communities and how often the children survive and integrate into the community. 

 Wambali beamed as he watched the school children dance and sing. When it was over Wambali stood up and requested (what the head master translated as) a “specific song of worship but whose name Wambali could not remember”. The school kids obliged by singing another devotional song and the Ugandan National Anthem. After the concert was finished I gave the head master my mobile number and he promised that his students would come down to Kagando hospital to give a performance for the patients. 

Wambali put the sun glasses back on his face, stood up, and led me out of the throngs of children back to the main road. This is where we had to part ways. I would go up the mountain and he would go down to his village. 

 

Singing as One

Marina, a fellow volunteer at Kagando, and I walked down the dark hill to the chapel. We were going to choir. There were some nursing students jamming on keyboard, electric guitar, and percussion. Many others sat on benches chatting animatedly. I was excited to finally be participating in choir (I had only observed from the back of the church).  Diana, the reverend’s hip daughter who studies film and media in Kampala, was our leader. She taught us a 4-part song. I sat with altos whose voices were rich, deep, and loud. I tried to do the same and my larynx ached and sometimes no sound would come out  so I would have to drink some water. It felt so powerful to sing in unison with the Ugandan nursing students. I could hear my own voice and the group voice with all parts at the very same time. This duality made me think of the balance we have to strike in all aspects of life: in the workplace, family, school— navigating between the individual, the ego, self-consciousness and appreciating the whole, the surrounding community, the environment— this is the perennial struggle that is easily resolved in a choir, but not so easily resolved outside of music. That might be the most powerful insight that music offers: the simultaneous appreciation of the self and the whole. 

 

What if our hospitals could be more like music. What if our government, voting public, families, and individual citizens could be like music? I think in music this balance is easy because listening to the orchestra improves the soloist, and vise versa and this can be fine-tuned based on auditory information. However, how can you tweak and adjust the balance between citizen and nation if you have no means for fine-tuning? I think the solution might be in defining the relationship between the citizen and the nation. The citizen gets benefits from society and thus makes a contract to follow rules set by society. On the other hand, society is built up by citizens and conforms to the shape the citizens make. So can we then strive to make our country a healthier more unified shape? A form that is actually conducive to the survival of every individual piece of the whole? Because right now the shape biases certain members of society. (I change the metaphor): This bias does not create a healthy organism. When there is more blood supply to one area, another tissue is compromised and dies. When this tissue dies the whole body is taxed and there is a dangerous risk of sepsis whereby the whole organism could die. So it is unhealthy and dangerous to build a society within which certain people are neglected. We should stop this nonsense. 

Surgical Saturday

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I spent the day in the surgical theater. First the patient whose arm had been destroyed in a truck accident needed debridement (where necrotic tissue is excised). His muscle tissue looked surprisingly healthy after two days in bandages. Contrarily, the smell was putrid from tissue fluid, blood, pus, and dying tissue. After debridement with scalpel and  surgical toilet with normal saline his arm was immobilized in a plaster and he was referred to a more affordable hospital, Kilembe (we have to do that a lot here).  

There was a C-section in the afternoon. As the blue baby was lifted from the gaping distended uterus I caught my breath, appreciating the significance of this moment: birth. The baby’s first cry and gurgling breath. The last drop of cord blood because now the tie between mother and son has been severed and they are two separate breathing patients. This kind of procedure is always intense because it involves two lives. 

 In the eye camp I felt as though a kitchen had converged with a classroom, nursery, and surgical theater. There were miniature autoclaves which whirred and hissed, their metal lids popping up off the basins of steaming surgical equipment. Babies from the neighboring theater and waiting room cried loudly. Ambient light from surgical lamps poured over the operating table. Nursing and medical students stood around listening to anatomical lectures. And finally, the surgeon peered through a magnifying scope into patient’s dilated pupils. I watched the surgeon remove murky cataract lenses and anterior capsules. I saw a conjunctival carcinoma tumor excision. I saw glaucoma treated by relieving intraocular pressure trabeculectomy (whereby a portion of the trabecular meshwork is removed so that fluid can drain out).  

After seeing several cases, my feet, which have been becoming edemous from so much standing, were tired and I went to the break room. Surgical staff are really relaxed kinds of people (outside the theater). They joke and tell stories and have this ward-wide competition running: a race car video game competion on the break room computer. I pulled one of the dusty surgical volumes from the shelves where rats sometimes scamper. Outside a loud clap of thunder hit the sky and then torrential downpour rattled the tin gutters and awnings. I felt so cozy sitting on the bench surrounded by the surgical staff with my book spread out on the table and all of us warm and dry. Surgery is becoming more and more fascinating to me each day, each patient, each procedure, each surgical staff member I meet. 

The storm cleared eventually and I crept out of the surgical hole— I call the theater this because it really sucks you in. As I  walked up the hill to my accommodation I turned around and was met with the most visceral sunset I had ever seen. The sky had burst into flames. Dark smoky clouds hung over the Rwenzori mountains while a vibrant orb burnt a hole through the grey and turned every cloud in the eastern sky bright orange. I actually ran to fetch my camera, but unfortunately the combination of being slow and having a terrible lens means rubbish photographs. 

 

Hospital Community

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In the afternoons patients and attendants leave the dingy wards for some equatorial sunshine on the grass. They lay their mats out and converse together or eat Matooke (boiled banana) as the toddlers waddle around between mats. The surgical ward patients are a family. They look out for each other’s children and share everything they possess. I was walking on the sidewalk between wards when I suddenly felt compelled to join the patients on the grass. They welcomed me to their mat with the kindest smiles and words in Lukonzo. The fishermen who spoke English said: “You are most welcome”. And I really was. We spent the afternoon talking about the fishing village, about their close encounters with hippos (which got them to surgical ward), about living with HIV (fishing villages show highest incidence of HIV), about their families, and my trip up into the Rwenzori mountains. I felt so comfortable and relaxed talking to the patients. They exuded such genuine warmth that I thought I would never leave the mat. 

But darkness began to draw the corners of light in the sky behind the ring of mountains around the hospital and I said goodnight to my friends. The moon was full, golden yellow, and massive on the horizon. I had decided (against better judgement) to take a walk up over the hospital hill through the small villages tucked in the valley behind Kagando. Air was warm and thick with small bugs. The big moon cast yellow light on the ground as if it were an anemic sun. Children whooped and shouted in excitement as I passed their huts, glowing blatantly in the dark: “MUZUNGU!!!!!!” Some of them trailed behind me, their tiny bare feet pounding the dirt road in the darkness. I began to run so that I wouldn’t be stuck in the villages at night.  The little feet behind me moved faster. Soon there were children flanking me on either side. I outstretched my arms as I ran and felt small fingers wrap around my hands. Running down the dirt road, hands in the hands of barefoot children, yellow moon in the sky, evening bugs chirping, I felt like this is it. This is being truly alive. When those little hands let mine go after a solid 5 minutes of keeping up I suddenly realized how safe I had felt in the throng of children. They were my protectors out in the villages at night. Now running on my own I felt exposed, vulnerable, and nervous. I ran faster. Swiftly ascending the monster hill that usually takes me ages to summit, I made my way back to the safety of the hospital. But when I got there i realized I had been safe the whole time. This place is my home. The villagers along the trail that I run everyday know me. They know I volunteer at the hospital and they look out for me. Even though I have not been here long, this is my home and I know I am coming back. 

 

Lorry Truck in a Muck

Today a man was crushed when the truck in which he was sitting flipped over. Amazingly he survived and arrived at the hospital with a shredded arm, deep lacerations to the scalp, and a severed left eyelid. He never lost consciousness and scored 15/15 on the Glasgow Coma Scale each time he was tested. I assisted in the debridement of his shredded arm.  The muscles, fascia, fat, nerves, and bones were all exposed as if in an anatomical display. Except it wasn’t a museum. It was a living person’s arm. Bits of gravel, dirt, grass, and other road debris were lodged in the opened tissues. The ulnar nerve (which I have become so familiar with palpating leprosy patients’ ulnar nerves) was severed at the elbow. The orthopedic surgeon found the distal and proximal ends and tagged them so that once the wound is cleaner the two ends can be reconnected and maybe but not likely, the nerve will function again to some degree. The patient’s humerus had sustained a 3rd degree fracture and the joint capsule where the humerus and radius + ulnar articulate was exposed and filled with tiny bone fragments. I poured normal saline at high pressure into the wounds after necrotic tissue had been excised.

Lake Nkuruba (Sunday)

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Drums drew me from where I sat in the sun reading. They beckoned me down a steep muddy hill along a sunday morning village foot traffic road to a cement building up on the far hill. As I climbed the dirt road towards the building where the pulsing drum beats resounded I realized it was a small church. Against the wall stood three plump cow drums and a very small girl beating very loud sounds from these drums. The rhythms she created made me want to dance. I listened for a while. Then I came to the drums and beat one as she beat another. We actually jammed. We actually created rhythms together, not ever having met each other and me not ever having played drums. The sun shown on our faces as we beat rhythms to the whole Nkuruba valley. I felt so proud to be making these sounds with her. Morning clouds scuttled across the sky as we played. Then my young friend jumped to her feet and disappeared into the church. She reemerged and beckoned for me to help carry the drums inside. We brought the three drums to the pew. A small boy joined us. I sat on a bench listening to these amazingly rhythmic kids. Two older women entered. They knelt opposing each other facing the cement walls and began muttering prayers aloud. They spoke two different prayers in two different voices—-one soft and low, the other powerful and passionate. The pastor entered and immediately noticed my Muzungo self (this means white person in Uganda) and introduced himself. He runs an orphanage and this was their church and these were their kids. It’s called Efuzi Orphanage. I think I will come back here one day. I was compelled by what the pastor said.

Leprosy education on campus

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“Will I get leprosy if I share a plate with them?” “Will I catch it if i speak to them on the ward?” These were questions the nurses asked on our leprosy ward round. Dr. Paul took the opportunity to give a brief lecture on leprosy transmission and treatment. I noticed after the lesson how the nursing students were no longer squirming to move away from the patients. I was surprised to see that even in medical circles, the fear of leprosy had to be dispelled. 

 

Building a leprosy outreach program (March 24th)

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The occupational therapist, Jackson, and I have been working on building a leprosy outreach program at the hospital. We wanted to set up a program where a team would make weekly trips out into the villages to find new leprosy cases, follow up old ones, and educate village council on the issue, informing villages reps that Kagadno is a leprosy referral hospital and should anyone in their village present signs and symptoms, they should be sent to Kagando.  We met with Marley, the hospital administrator. Marely is very sympathetic to our cause because he has a special place in his heart for people suffering from disability. Our assignment was to construct an agenda including names of patients, village locations, dates of visits, and he would arrange transportation. Jackson took the initiative 100% on this project. I merely attended meetings and encouraged from the sidelines. This was very exciting for me because it means the program will persist after I leave, which is soon.

Rogers (monday March 25th)

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Rogers is a small boy with contracture and wasting of the right upper leg due to an abscess caused by intramuscular quinine injections. I hadn’t known that IM injections can lead to such grotesque and debilitating abscesses. Many pediatric patients here come to the hospital with an abscess due to IM injections. Moral of the story (and I deeply regret not knowing this in Madagascar) is to administer quinine or other medications intravenously, not IM. 

Rogers’ parents have abandoned him at the hospital. He is undernourished, in pain, and depressed.  But he is not lonely or neglected here:  patients, attendants, and nurses take turns feeding, washing, and caring for him on the surgical ward. It is heartening to see how other patients step up to aid him where they can. These patients are not helpless as their status might suggest—stuck in the hospital for months, at the mercy of ward rounds, nurses plunging medicines into their veins— they can participate actively in the surgical ward to help a fellow patient. The women cook matooke (boiled bananas), bundu (cassava dough), and other Ugandan treats for him and wash his little outfits; the men put him on his wheelchair and take him on walks around the campus; the kids are constant visitors and entertainers at his bed. Some of the patients speak his language so they help the doctors during ward rounds.  I wonder if this model could work on a larger scale. Build a self-sustaining hospital. It is really a Patch Adams idea, but I see the reality of it here in our surgical ward. 

I took Rogers to physiotherapy (where I would be bringing him every day over the next weeks). He had been given morphine for the pain but it was not enough.The poor child screamed, fat tears flying out of his eyes, arms flinging desperately. He urinated when his cries were only met with more physiotherapy. Although it breaks the heart into thousands of pieces to hear a child cry like this, the knowledge that this is something he needs in order to walk again prevails. It is just 15 – 30 minutes of pain and then he actually feels better than before because his muscles are more relaxed and he can sit up straight in his wheelchair. After Roger’s minutes of torture, one of the loving patients scooped him into her care. I stayed at physiotherapy, learning about back exercises that will help me stand in the hospital all day on my feet. 

 

Safari (Sunday March 24)

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We woke up before the sun had risen and groggily piled into the van that would be taking us to the Queen Elizabeth National Park. As we entered the vast savanna specked with dark shapes the first flecks of pink began to paint the clouds. We watched the yellow ball of a sun rise in less than 5 minutes over distant mountain shadows. Fuzzy yellow weaver birds were already busy flying in and out of their spherical nests which decorate the trees like christmas ornaments. We came to a fork in the road and then before us, lying on the dirt road, was a massive female lion. I appreciated her enormous chest and leg muscles. Then there were more individuals– six other adult lionesses and three small spotted cubs. The lions began to move away from our excellent close-range viewing point. They crossed the road, tucked into the bush and some hopped up onto tall ant hills. One of them sat atop the anthill for quite some time as if upon a throne in front of her expansive domain. I could see their long tails waving above the bush as they continued to push deeper into the savanna. Then they were gone. Lions are majestic creatures. They have a regal demeanor and a playful presence despite their imposing size. Continuing safari we saw Ugandan cob, waterbucks, bore hogs, baboons, a white tailed monkey, elephants, hippopotamus, crocodile, storks, pelicans, starlings, kingfishers, lizards, and many insects and birds. 

And I came unto a Burial

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“She was 17,”  a young man walking down the mountain told me as I got close to the burial. I felt so sad. Im sorry I said–it is so painful and tragic when young people go.  I showed him the star on my wrist and explained that my friend too had died when she was 17. Another young friend died when she was 24. These girls lived only for a short while on the earth, but in their times each made a huge impact and lived a very full life. I imagine how the 17-yr old being buried at the top of the mountain also lived a full and beautiful life. I knew somehow that even though she would be laid to rest after only 17 years of life, she has touched many lives. 

On Call (March 18th)

It is exciting and slightly scary going onto the surgical ward on call in the middle of the night. It means there is something serious, such as a head injury. One patient who appeared as if he had been beaten over the head (but the attendants said he was a victim of a motorcycle accident) presented clinical signs of cerebral edema (brain swelling). His blood pressure was high, pulse dangerously low, one pupil was dilated and non-reactive to light while the other was normal, he had lost consciousness, and was bleeding from the ears. Eventually he had to be transferred to a bigger hospital for a CT scan and then once the site of bleeding (the hematoma) was identified, it had to be drained via craniotomy. Another patient was mugged and severely intoxicated. Another night call was for sever abdominal pain on the surgical ward. This could have been an appendicitis or ectopic pregnancy.

When I do not accompany the on call doctors to the surgical wards at night, my evenings are very quiet. I live with 8 really friendly British medical students who (as their stereotype accurately describes) drink tea and chat around the table each night. There is no going out here in this small small village, and working in a christian hospital. There are two Somalian medical interns who study for the USMLEs every night until late. I enjoy working alongside them snacking on cookies and talking about global politics. These interns are smart and endlessly entertaining.