LEARNING TO UNDERSTAND

I have been trying to spend Mondays at the Good Shepherd Home to work with the 2 PT’s there. Presently, the assistant to Father Henry is back in town and would like me to work directly through him re any PT changes. My job is to observe and make recommendations for new ways to mange the PT schedule and treatments. This is a hard to do, as the two of them feel a bit apprehensive with my presence. I understand this completely.

I have been trying to work as their “assistant” to get a better grasp on how they manage the many children they have to see. I was looking forward to being able to “talk shop” and have something in common with some of the women here. I am especially looking forward to learning serial casting, as this is a common treatment for contractures. There is a cultural barrier in that the Uganda women are very soft spoken and do not divulge any information. It is very easy to take this as standoffish without knowing fully what is going on in their heads. Trying to figure this out is also a stretch.  I feel my presence just made them more anxious and was not helpful for them or myself.

I returned to Busega Tues feeling like I had wasted most of the day Monday (a very hard thing for me to do as I feel the pressure of time slipping away) We don’t have the forms and paper needed to start documenting treatments, a goal of mine for this week. The plan is to use the same forms as they do in the Mother House in Jamaica, which makes perfect sense.  I must to learn patience as time here moves at a much slower pace than I am used to or comfortable with.

Friday, Grace and I scheduled an appointment to take Vincent to the Katalemwa clinic for a fitting of a helmet. Vincent has hydrocephalus that was never treated with a shunt. He was taken in by the Brothers and given medical care. The doctors reported that the hydrocephalus was arrested (that Vincent’s already abnormally large and deformed head was no longer growing in size therefore a shunt was not indicated). Vincent started walking this spring, which allowed him to go to school. He still has balance problems and occasional falls.

Patricia, the volunteer PT, tells me that Vincent had a horrible fall in the bathroom at school a couple months back. The toilets are ceramic squat holes in the ground. Vincent slipped and fell lodging his head in the hole. He was stuck there for several hours face down until the teacher found him. This was horribly and understandably traumatic for him. I only tell this story, as it is important to understand the struggles these children have to endure.

I wanted to visit Katalemwa, as this is where many of our children receive rehab and bracing following surgeries. I was hoping to meet the orthotists and see how the referral process was made. I was also hoping to get information on where to obtain the needed rehab equipment for our new gym as I was struggling to find any medical supply stores in the area.

Little did I know that this trip would teach me more about what people have to endure in the community in addition to my original goals. We waited until the rain stopped before we left Busega (no one travels in the rain unless by car or taxi). We started walking the muddy wet back road to reach the main road for a taxi (what we call a bus).  Poor Vincent was struggling, as his balance was already impaired. Grace called a boda boda driver to take Vincent and I to the taxi park and she took another one shortly behind us. I held onto Vincent tightly during the trip feeling the sliding of the boda’s tires on the slick mud.

We then hopped into the taxi jammed with people. Taxis are Chinese made vans, which have the seating capacity for 15 people though the taxis take in at least 20. There is a driver and a conductor. The conductor sits at the window looking for riders (no need to stand at a bus stop…just wave and the taxi will stop). The conductor takes in the money (usually 1,000 shillings or about 40 cents) and doles out the change. His job is to be sure the taxi is always at full maximum capacity.

Grace cared for Vincent during the trip like a mother, wiping his nose and stroking his head as we travelled. People would stare at him and his rather large head. Grace explained that this was a good community awareness exercise as people in Uganda hide their disabled from the community. Most people think disability is a curse or witchcraft. Grace uses this as an opportunity for community education. My respect for her was increasing as my understanding of her and the difficulties of the commute were becoming more obvious.

We managed to arrive after 2 taxis and 2 boda boda rides. Grace’s home is near the Katalemwa clinic and she has to make this commute daily to and from work. This is at least an hour each way if not more depending on how often the taxi decides to stop or wait for riders (they like a full van). I felt like I was in a different world. I realized how sheltered I was in the Monastery, how alone and out of place I felt out in the community. How uncomfortable I felt when men came up to me shouting and waving their finger at me (I had no idea what they were saying and just walked by ignoring them) While in the Monastery, I had forgotten that I was white, though it was very evident out here.  I stood out like a sore thumb attracting unwanted attention along with Vincent. I tried to take it all in with stride as Vincent did. He had to tolerate stares and taunts whenever he was out.

You could say it was a very productive in more ways than one. While at Katalemwa, I was able to locate equipment that I could purchase for the PT gym. I was able to speak with the rehab staff re the durability and cost of each item. I did note that our PT room, when finished, would far exceed that of even the Katalemwa clinic. This made me smile, as the children of the Brothers will have the best in the area. The helmet fitting unfortunately for Vincent did not go well. The initial cast was taken 1 month ago. It no longer fit when they did the trial fitting today. This meant that Vincent’s head was still growing. This is of great concern as it means his hydrocephalus is not arrested as previously thought.

The time it takes to get out here makes decision on what to do more difficult. Grace and I discussed whether or not to do another casting or wait for an MD consult, which may take another month. She decided to re-cast and schedule a fitting for next week. She also scheduled an MD appointment for the end of December. I was able to watch the orthotists work. They did a great job and were very caring towards Vincent.

Vincent had a snack earlier thanks to Grace, though now it was nearing 2 PM. I was hungry and Vincent was tired having just gotten over the flu 2 days before. I suggested that the 3 of us go out to eat for lunch on our way home, my treat.

We stopped at one of those metal looking shops in a local trading center, which turned out to be a restaurant. It was a small dark room with 6 small tables and rickety chairs with plastic Coke tablecloths. We washed our hands outside the front door where a big Gatorade cooler sat on a wall with a bucket underneath to catch the water. There was a hunk of soap but no towel.  I was a bit worried about the food, as I had been warned NOT to eat at any vendor’s shops.  This was Grace’s community and she was quite at home here so I was less worried.

I didn’t speak Luganda so I asked Grace to order for us. They had traditional dishes (a meat, vegetarian or fish dish with sides of matoke, greens, rice or beans). I told Grace to order what she likes and we would all have the same. Grace’s face lit up when she said she loves fish. The woman spoke with her and grace’s face fell. Grace explained that this would cost 5,000 shillings or 2.00 US dollars each (a HUGE expense for the average Ugandan and most likely more than the usual cost given my skin color). I told the waitress we will have the fish and again Grace’s face lit up.

I asked Grace what she has at home for supper. She explained that they usually just have pashto (the white maize flour paste) and beans. There are days when they just have tea. Due to lack of money or fuel for cooking. Grace’s major meal is at lunch while at work. The meals for the volunteers usually consist of rice, meat or chicken stew, beans or greens and a banana and cold water. This is a feast compared with what people can afford at home. I remember the stories of the nurses explaining that often people eat only 1 x day.

Our meals were large portions and Grace and Vincent managed to clean their plates while I struggled. Part of this was due to the fact I found a large worm in my fish. UGH…I just moved it to the side and continued to eat though carefully inspecting every bite.

We finally made our way back to Busega via boda boda and taxis.  We got out of the last taxi and a local woman handed Vincent a 500-shilling coin.  She looked at him with compassion. Vincent was quite excited and immediately asked for chapattis (a fried flat bread which I also really enjoy) with his new treasure. It didn’t matter that we just had a huge lunch 45 min earlier. These kids can eat more than most adults. I think they get used to the fact that they need to eat food while it is there as there might not be any tomorrow.

Vincent and I were near the Busega home travelling on our last boda boda ride when the 3 PM truck taking the Brothers home passed us. It made me smile and feel good to have the driver honk and all the Brothers waving, smiling and calling out to me saying, “come Sister! Hop in! You’re late!” I waved them on feeling a warm sense of belonging. I realized how fortunate I am to have a BIG family to stay with and come home to after long days at work.

I have come to appreciate the struggles of daily life for the workers such as Grace and Miriam. I have a better understanding of why they often come late. I understand better the slow pace they move as if in a constant trudge through the struggles of daily life. I see the discomfort and the poverty with which they have to live and work despite the fact they are paid a small fee and are “rich” in comparison to the average Ugandan. They too must find a way to sustain in order to persevere. They are working as hard as they can tolerate though to us it looks as if they move to slow or rest too often. We have comfort to return to at the end of the day. They live in less comfort than what the children have at the Busega and Good Shepherd Homes.

I have come to highly respect Father Hulong and his community of Missionaries of the Poor Brothers. They are giving life, love, comfort, medical care and meals 3 x day to these abandoned ones. They do it with joy and enthusiasm. They work harder than anyone I have every met. They work hard but also sleep little, rest little, pray often and do it with a smile day in and day out. I cannot keep up their pace. They must do this only through the grace of God. They are an example of true “Joyful Service to the Poorest of the Poor.” I know they will have a high place in heaven and can only hope for their prayers of intercession to someday allow me to enter even at the lowest “rooms” of God’s mansion.