Open Sesame!

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This week we had a very successful opening ceremony for the Atanekontola Mental Health Resource Center. Although we had a late start (not so unusual for Bugembe), once the program was on it’s way it went even better than expected.

We had three members give testimonies about their experience with mental illness, two of them mental health service users and the third a mother to a service user. They spoke about the challenges they faced in finding quality mental health care and the people who helped them along the way. Our final speaker, Robinah Alumbuya, who first experienced mental illness as a teenager, dedicated most of her speech to the issue of stigma. “We suffer a psychosocial disability,” she explained. “Maybe 10% is caused by illness, but 90% is caused by stigma and discrimination in our communities.” This is a problem that many members can attest to, having been passed over for jobs, loans, or socially isolated because of mental illness.

Robinah also had an important message about how to deal with stigma and promote mental health. “Nothing about us, without us.” Unfortunately, mental health treatment and programming (both in Uganda and globally) often develop based on the opinions of doctors, clinicians, “experts”. There is a growing understanding that it is also essential to include service users in the decision-making processes that directly effect them.

Later in the program, Dr. Seggane Musisi, the key note speaker, discussed the best approach for non-service users to take in promoting mental health. Friendship. He told a story of a service user, who happened to come to his clinic not wearing any clothes. Dr. Musisi shocked everyone at the clinic when he led the man to his care to drive him to the hospital. People couldn’t believe that a distinguished doctor would associate with a “mad person”. These types of actions, Dr. Musisi explained, are what begins changing people’s minds about mental illness.

I was lucky enough to have my Mama here for the opening, but now that she’s gone we’re back down to business. This week we are voting in a new Executive Council for Atanekontola, and pushing forward to make all of the new programming we’ve been doing permanent. With my departure only 2 weeks away it will be busy, but hopefully as successful as the opening.

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Deborah’s Story

Deborah has been a member of Atanekontola Support Group since 2003. She joined after being hospitalized at Butabika National Referral Psychiatric Hospital for the fourth time. Here is her story, in her own words, of living with mental illness in Uganda.

“I am Deborah Mudoola from Wanyange. I am a Ugandan, aged 53 years. I was born in a very good family and started my education well. I ended in S3, then from there I went to Masaka Midwifery Nursing and Training School. I was there for 8 months but I got mentally disturbed.

They told me that my brain thinks too much. I don’t know how you call it, we call it obwongo bungi. It means as you have water full in a jerrycan, so that it is spilling over. I was seeing people running after me with axes, so I started running away. They brought me back home and I stayed with my mom. I was not able to continue my studies so I got married. I was there for 12 years and I gave birth to 5 children- 2 boys, 3 girls.

But then the husband passed away when he was still young. I wanted to look after my children, but I got mentally disturbed again because I was not getting enough money for school fees, not getting enough food. They tied me and took me to Butabika Hospital. I was there for a good 4 months without understanding. That was in 2000. Then in 2002 it came back again. They brought me back home when I was okay with my tablets, but my problem was as soon as I came back home I stopped taking drugs. I did not want to take medication, because if you take drugs you sleep too much. So I had to neglect them so that I work for my children. Then in 2003 it came back again, this time it was very worse. I was with my doctor at Butabika, he sat with me and told me that when I go home I have to take tablets until I die. I had never heard something like that until this last time in 2003.

The doctor rang to Mufumba so that he comes to my home to see how I can be helped. They told me there was a group here called Atanekontola. I started coming here to get medication. Now we are here as Atanekontola group getting medication. Before I joined Atanekontola I was buying them but at a very high price. Now they give us tablets freely and we are with many friends, so that we go on. As I am on medication with Dr. Mufumba and Babilye now I don’t have any problem. Now I can control the drugs myself and it has helped me much. Now those 5 children I had, when I was okay I was paying in school fees so all went to school and have jobs. My last born is doing his diploma as a veterinary officer and he is completing his course in June.

But still we are sometimes neglected by the government. We don’t be given work because they say, “that one is a mad”. When I was sick the government switched off my power because I was not working. Now I am there suffering. I want to make cakes, so that I sell them off to get money and that stress would go. I can’t do it because no power. We feel it very badly. When the government is giving chickens to other people to raise they will say, “no that one is a mulalu (mad person) and can not look after chickens”. So that you stay there crying and the mental illness and stress comes back again. They discriminates us. The government must give us also the opportunity to work, because now we are okay.

Thank you very much.”

Giving testimony on our radio program

 

Let there be light!

Our solar panel arrives

Although the upcoming elections are turning out to be somewhat dark, Atanekontola provides a bright spot. This week we are installing our solar power system, an exciting step towards ensuring the independence and sustainability of our programming.

One of the most important programs is the drama group. In the past the drama group performed a poem about mental illness, aimed at reducing the harmful stigma in our community. Although the repertoire has expanded recently to include a new poem and a short play, there is still a lot of work to do. Fortunately the new drama coordinator is an energetic woman who is enthusiastic about our collaboration.

This week the group met to discuss the image of a person with a mental illness in the community and how it relates to the images that we use in our performances. A mulalu (mad person) is most commonly described as someone who is violent, dirty, and uncontrollable, a similar judgement that individuals with schizophrenia face in the U.S.

Unfortunately, these stereotypes were dominant in the play and poems that the group used to perform. We are now working together to present more diverse and less stigmatized images of mental illness. For example, the protagonist in the play previously described his ill son as “eating garbage, walking without clothes, over-yelling”. Now, the play centers around a family dealing with depression. Our poems still discuss the challenges faced by individuals with schizophrenia, but rather than talking about violent behavior, it points out the confusion and fear that mental illness can cause.

I have my reservations about the validity of the voting results to be announced this weekend, but at least there is Atanekontola to look forward to. And now we have lights!

Omwana wange (My daughter)

My Christmas festivities began a few days early on the 23^rd with a visit to my daughter’s home. You may be surprised to hear that I have an adult daughter at 22, but one of the benefits of having a Ugandan name (Babilye, the name for a twin girl) is that anyone who is related to someone of the same name instantly becomes part of your family. In this case, my really close friend Juliet’s mother was Babilye, making her my daughter, and her children my grandkids.

My friendship with Juliet, who I call Omwana (Baby), began last year when I met her through Atanekontola. Because she works at the health center as a maternity ward nurse and also lives there I’ve gotten to spend even more time with her this year. Ugandans are almost as a rule generous and welcoming, but my Omwana is exceptional. Every day that I’ve gone to the building site (which is a lot of days) she’s fed me, sat and talked with me, and let me play with her adorable daughters.

It’s gotten so that I don’t really feel a day is complete unless I’ve gone “home” to see them, and not only because of the great food or fun we have. Mzungu (white person/ foreigner) is a tough label to shake, and can often have a strong effect on how people interact with me. Visits with my Omwana are precious, rare time when I really feel free of the limitations and expectations of a mzungu. In fact, she’s sometimes quicker than I to correct people and say,

“Mbe, ali Musoga” (No, she is a Musoga (a person from Busoga region))

Unfortunately, Omwana lost her older sister a few weeks ago, a woman who was more like a mother to her. After she received the news, we spent the whole day together talking about her sister and working together to get everything ready for the burial. Although she’s been putting on a brave face since then, our trip to her house was a reminder of the loss of her sister, who would have been there with us. I could see it was a difficult day for her, and so was surprised when she told me that she thought the day had been “blessed”. She quickly explained.

“You are a real mother to me. I have no one else but you are here. God has blessed me.”

I was awed. I have long thought of Omwana as an indispensable friend, who I depend on to cheer me up on tough days and to help me talk through challenges and frustrations. But I was humbled that she also depended on me in some way.

Although it was hard leaving her knowing that I won’t see her until she gets back from her village on Monday, I left feeling a little like Scrooge might have on Christmas day. Very, very lucky.

My omwana with her omwana

Moving In

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As this month is one I’m used to spending at home with family and friends, it was a perfect time to move into a new type of home. Wednesday, December 15^th my friend Basoga put the last touches of paint inside our new mental health center. I’m not sure if it was the paint fumes or my emotions, but my head swam and I found myself blinking back some minor waterworks. We’re still not completely finished with construction on the outside of the building, but finishing the inside means we are now fully operational (if not outwardly polished).

 

Although the chaos of Christmas (the majority of Ugandans are practicing Christians) means that we won’t get much done until after New Year’s, we were at least able to precede the distraction of the holidays with some fireworks of our own.

On Tuesday, the 14^th we held a “launching/ fundraising/ community awareness event”. The plethora of titles resulted from both a need to be strategic in our advertising as well as our attempt to cram as many missions as possible into one day. The “launching” was overshadowed by single-minded, opportunistic politicians making speeches, and our “fundraising” was about 1/6 what we hoped for, but I ended up with the feeling that the event was more successful than we could have planned.

Once the hopeful candidates began to leave, or quiet down at least, the day greatly improved. By that time several hundred community members had gathered around. The Atanekontola drama group performed a poem and a short play about a man whose son is suffering from schizophrenia. The story unfolds almost identically to those of many of the families within the group. The distressed man is counseled by his family to visit a traditional healer, while a neighbor persistently tries to convince him to take his son to a hospital. In fact, the testimonies that members gave afterwards mirrored the play. We closed the event with a short speech by our director, Emmanuel Mufumba, and planned to pack up. We were happily surprised, however, when several onlookers asked Mufumba to stay and began peppering him with questions about mental health, which turned into a public discussion.

At the end of the day I went home with a lot learned and a lot more to think about regarding how to promote mental health and the work of Atanekontola. I hope we also gave the community a lot to think about mental health, and good reason to keep us busy at the center.

We’re still fundraising to install power- as I told Mufumba, “All I want for Christmas is a solar panel”. So if you love sustainable energy, community mental health promotion, or BOTH, check out https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=8UJRJ84Q4Q7HS&lc=US&item_name=Atanekontola%20Mental%20Health%20Center&currency_code=USD&bn=PP%2dDonationsBF%3abtn_donateCC_LG%2egif%3aNonHosted

Tujje kugema Polio! (We’ve come to bring Polio!)

Due to recent outbreaks in the East, the Ugandan Ministry of Health (MOH) began a Polio vaccination campaign throughout the region. My “daughter” by namesake, Juliet, is a health worker and asked me to help out for the numba ku numba (house to house) program here in Bugembe. The goal was to vaccinate every kid from one day to five years old.

We moved in teams of two or three: a health worker to give the oral dose, a mobilizer to help navigate the village, and an assistant to tally, tic houses, and color in the pinky nail of each kid (that was me).

The challenges ranged from logistic to climatic. When we started the first round in November, there were two health workers assigned to cover two crowded villages in three days. By December, officials knew to more effectively distribute the teams, but the MOH no longer provided funding for mobilizers. Fortunately, we found that lively groups of kids were happy to lead us around. When one group fell back so as not to stray too far from home, another would assemble in its place. We also faced exhausting sunshine (November) and resounding downpours (December), and little in between.

And yet, despite the sometimes harsh realities of the task, I felt a sense of surreality throughout.

There was a strange disconnect between the seriousness of purpose and the carnival-like atmosphere accompanying us. When we arrived at the homes, one of us would announce “Tujje kugema Polio w’abaana!” (“We’ve come to bring Polio to children!”). What we meant of course, was that we were bringing the vaccination, but due to some trick of translation that was the best way to say it.

After the mother’s gave their consent, Juliet would then give each child 2 drops of live polio virus. Now this is a serious undertaking, both in what can be prevented and what can result, Polio disability is visibly present in Uganda, and will continue to be so if the outbreak is not properly controlled. At the same time, a live vaccine can have side effects^**, and there have been cases of negative health outcomes in other vaccination campaigns carried out improperly.

It was therefore difficult to reconcile the powerful, potentially life-saving vaccine, with the small vials of bright pink liquid we were carrying around in coolers. Even more disorienting, we eventually followed the parents’ lead in telling the kids that it was “soda” or “sweets” to calm any fears. Then after getting their two drops, each kid got “nail polish” (really a permanent marker) on one of their fingers. This was to show that they’d received the dose so as not to accidentally administer it twice. Most of the kids, however, treated it like a prized reward for dutifully swallowing their “sweets”. The final step was to tally each kid on our record keeping sheets, then put a chalk tic mark on the door of the house. I couldn’t help but make an association with the Biblical protective power of lamb’s blood on a door.

At the end of our 2 rounds, I am unsure how I feel about what we have just done. On one hand, if our efforts helped protect the region from polio, I’m glad I was able to help. I’d like to trust that the tests and carefully planned protocol we followed will prevent any harmful result. There’s always the slightest chance, however, that something could go wrong and we’ve created a problem rather than solved one, and if that’s the case I am responsible. In other words we’re faced with a central problem in public health and development work: you never really know if you’ve done any good until the end.

I do know that I have a lot of great memories of the volunteers I worked with and the families we visited. It brought me closer to my friend Juliet and the community that I’m a part of.

*The oral vaccine for Polio that we used has been deemed safe for any child regardless of immunization or health status.

PIRATES!

Quick Side-note: Some of you may have gotten wind of the strike that began in Bugembe on Wednesday, November 17^th. Unfortunately several people were injured, but I was completely safe and still am. Now back to our regularly scheduled program!

I’ve always considered pirates with a tone of whimsy, or as a good Halloween costume. That is until I was informed that Somali pirates hijacked our specially ordered iron sheets for roofing. I’m not sure what they wanted with them, but it was nonetheless the reason given that they were going to arrive two weeks late.

After 24 hours of panic about our construction schedule and the durability of the uncovered roofing timbers, we were able to do a little hijacking of our own. The roofing company happened to have an order for sheets very much like ours, but two feet longer. They ended up giving them to us for the same price, and we’ll be able to use the small sections we trimmed off to roof the toilet when it’s built. So I guess I should be thanking the pirates (if they were actually involved).

The roof is a pretty significant step, as it represents one of the main reasons for building the mental health center. Up until now, Atanekontola meetings have taken place outdoors, which means they don’t happen if it rains. A problem that was perfectly illustrated last Sunday, when myself and the roofers were chased inside by a resounding thunder storm. The morning of the 15th, however, the last section of roof was hammered into place.

As construction slowed to continue fundraising I had time to help out with a polio vaccination campaign and get back into Atanekontola’s community work. We hosted a two hour radio talk last Friday about depression, and one of the members gave a really powerful testimony about her experiences. The drama coach and I are planning to assemble testimonies like hers into a poem that members can perform at community events that raise awareness about mental health and mental health services. The testimonies may also become part of the collection of reading materials we’re going to have in the resource center for public use.

We’re still hoping to move into our new home by the end of the month, so if you can, please donate on our PayPal page. Any contributions will be much appreciated, and thank you again to those who have already contributed.

No more rain delays

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A Roof Over Our Heads

Week 4 has come and gone, and our progress is finally making an impression on me.

Outside walls before

Atanekontola began constructing the mental health center in 2001, and we’re determined to have it functioning by the new year. After this week, all that remains is to secure the iron roofing sheets, and I’m still reeling from the impact of that realization. For 3 ½ weeks I’d been snapping photos and approving plans and even participating in the work, but it wasn’t until Wednesday of this week that I really took in what we’d done. And all it took was a pile of wood.

This week was particularly busy as we had both the construction and roofing crews working at the same time. It all came to a head in the middle of the week, with the inside office walls being built, doors beings installed, and our roofing timber going up simultaneously. There were so many people and so many tasks being worked on that the site looked more like a living, breathing thing than sedentary walls. I decided to give the workers some space and was sitting in the shade with one of my favorite maternity ward nurses and her adorable daughter. I felt a tug at my elbow and followed the pointing finger just in time to see the first triangle of timber swing up from the inside of the structure into position.

I was startled by how much that single sight shook me. For the first time I stopped to consider that a project almost a decade in the making is nearing completion. The indoor walls, the windows and doors, and especially the shape of a roof give the space a much more human feel. We’ve gone beyond four walls, and now it looks like a place that could be home to community mental health efforts. I hope it will be for a long time to come.

Progress!

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De-worming

“When were you last de-wormed?” Musawo, my host in Bugembe, asked me sincerely.

“Um… never…” I responded tentatively.

“Oh dear.”

Only part of the family

Musawo’s worrying lament was the starter pistol for a 72 hour search for the source of my mysterious illness. Having experienced a number of gastro-intestinal abnormalities in the past, I was unconcerned. Alarm rose, however, among Musawo, Mama Rose, Jjajja (grandma), and the host of nursing students boarding at the house. I was diagnosed with advanced stomach ulcers, malaria, and of course, worms. The prescribed treatments ranged from dietary to antibiotic to spiritual, but in the end I accepted jjajja’s 30 minute-plus prayer sessions (I had no choice), lemongrass tea, and a deworming pill. I’m not sure what did it, but within 3 days I was fully recovered.

In the end, the 3 days accentuated the joys and challenges of living with my host family, the Mufumba’s. I can not say with any certainty how many of us there are in total, but for now there are at least 15. The crowd is such that I’m greeted in waves when I come home; first by the kids who run down to meet me, then by the nursing students sitting on the verandah and back stoop, and finally by Mama Rose or jjajja who is always busy cooking, cleaning, or chasing after one of the kids.

Despite all of the fun and activity it’s taken time to find, or re-find, the best way to connect with everyone here. The kids were the easiest. Although the younger ones don’t speak English, their Lusoga is still young enough that I can keep up. Since day one I’ve spent lots of time getting to know them through games and coloring.

Longoli coloring

I got some of the students to read Vonnegut

The nursing students are mostly my age, which was promising. But I quickly learned that when they’re speaking nonstop Lusoga together it’s easy for me to lose the thread of the conversation. Fortunately, there are the soaps. Ugandan television networks show various soap operas from different countries, in particular Latin America, dubbed in English. Sabor a Ti and Hidden Passions are the house favorites. Six nights a week we all gather at 8pm to see if Sarah will finally fall for Franco, and I get a chance to be just one of the girls. So all it takes is a Mexican telenovela to help create common ground between American and Ugandan twenty-somethings. These days I also go for morning runs with a few of the girls, and hang out on the verandah in the evenings.

Jjajja and I have been able to carve out a unique relationship for ourselves. She is actually a great-grandmother to a pretty large brood, but lives here with the Mufumba’s as a domestic employee. Although she speaks no English, Jjajja and I have always had a natural closeness, which has only increased since she decided that she’s going to take my twin brother for her second husband. There are times, however, when it’s clear we’ll never fully understand each other. She is daily exasperated by my “small” appetite and I have yet to get her to accept my offers to help wash clothes.

All of the little misunderstandings, even about how to deal with an upset stomach, give me a good excuse to do some self-reflection, learn a little. I definitely wouldn’t trade them for a guest house.

Onward and Upward (literally)

My third week back in Bugembe, Uganda is coming to an end, and I can hardly believe it.

I was swept back into my life from the moment I left the airport with my welcome crew of 14. Musawo (doctor) Emmanuel Mufumba is my host here, and as such took it upon himself to pick me up from the airport along with a group of his nursing students. I spent the entire 2.5 hour drive home with my nose stuck out the window to reacquaint myself with the sights, sounds, smells- settling red dust, bicycles piled dangerously high with green matooke bananas, reggae music, and the unbelievable fresh scent coming from green hills (sometimes mixed with the sickly sweet odor of burning garbage). It’s a good thing I had that short time for reflection because when we arrived home jjajja (grandma) literally carried me into the house, and then handed me an overflowing plate of food.

Playing on the porch

Since that moment it feels like I have been in ceaseless motion. Musawo and I were able to get official approval from district officials for the building of the new mental health center at Bugembe Health Center IV within 10 days of my landing in Uganda, a feet I had designated at least 3 weeks for.

Our work then turned to touring the county with my now-close friends Waiswa, our engineer, and Ntale, the driver of our hired hauling truck. Quiet unlike a trip to Mennard’s, building projects here begin with several days of driving to the coast of Lake Victoria and isolated villages. We collected materials like “lake sand” and “hard core” (which is large chunks of hand-quarried quartz-like rock) and paid for them by the truck-load, or “trip”. Although each journey took several hours, much of it spent bumping along either dusty or swamped roads, I absolutely loved this portion of the project. It gave me time to admire the unending green landscape, learn all about the construction process, and enjoy kikomando (take away) lunches of chapati and avocado in shady spots along the way.

Breaking stones

With only a few trips left to make, we began construction on Saturday, October 30th. Despite my lack of experience and arm strength I’ve been helping out where I can, much to the amusement of onlookers, friends, and the construction workers. On Wednesday I gathered a large crowd while standing on our timber scaffolding to layer bricks, but as that highly visible step is over the number of spectators has diminished. If all goes as planned the structure will be complete by the first week of December!

Laying bricks and nearing the end of Phase 1