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The Toll in Uganda - HIV/AIDS in Tororo, UgandaText and Photos by Annmarie Christensen,
Director of Publications, Global Health Council
 Few men live in the villages skirting Mount Elgon, about 10 kilometers from the Kenyan border. The homesteads of tukuls -- mud huts with thatched roofs -- house dying women and their children, who tend to their basic needs.
Uganda’s scenery is beautiful and so are its people, the ones who are left behind. As Sam Worthington, president of PLAN International USA, and Merv Silverman, a member of his board of directors, approach the dozen or so tukuls in the Tororo District, the children laugh when they see white people. As sure as the rainy season will come, these smiles will disappear. The visitors bring with them a short distraction from the children’s daily reality: often they must walk several kilometers to carry water back in jerry cans, there are no toilets, there is no electricity, there is little in the way of medicines or luxuries to make them feel better. Reality is that each day they are threatened by malaria (which is still the biggest killer of children), influenza, tuberculosis, and HIV/AIDS.
***** Federesi Aboth, who is 34 years old but looks about 20, is living in the final stages of AIDS. There is a large black mark visible below her graceful clavicle, and the inside of her ears and nose are caked with white residue, as are her feet. At the entrance of the tiny village there is already a gravestone that marks the resting place of others who have gone before her from AIDS. Her 10-year-old son, dressed in a tee shirt and ragged shorts, is her primary caregiver, a large task for such a young child.
 Her infection and illness are not her primary concerns, however. When asked about her needs, she responds that her children need food and the thatch on her roof needs repair. The rains are late in coming this season, but are as inevitable as the death she faces. There are not many men left to support the villagers, and Federesi is too weak to tend her small garden to feed her brood, five children aged four to 16. In this district, a typical family lives on less than US$100 per year. The only industry for miles around is the cement plant. She says her husband died of AIDS last year.
While the entrance to the village is little more than a goat path, death has no problem ambling through the bush. This village is part of the Tororo district where the HIV infection rate totaled 51 percent in 1998. Subsequently, the rate fell to about 30 percent in 2000, but this drop is the result of the 44,000 deaths from AIDS of people living in the district. Some say that education, counseling and testing of HIV positive people could be helping the rate go down as well.
PLAN International is the only international NGO in the Tororo District and Beatrice Muwa, PLAN’s health officer, has her hands full. For two days she takes us around the district, introducing us to the people; every person here is either infected or affected by the HIV virus.
PLAN International helps people in Tororo in a number of ways: providing a small amount of food so they can survive from day to day; helping in succession planning so children will have caregivers after their parents die; supplying coping skills to infected persons and the families left behind; and training villagers to be self-sufficient farmers. But helping orphaned children tops the list of priorities for PLAN. "If I would have more money, I would put it in succession planning," Muwa says.***** When she feels strong, Federesi Aboth spends her time working on a memory book for her children. It’s part of the succession planning encouraged by PLAN International and adopted by many local NGOs in Uganda. Her memory book is a record of her health and family history, her likes and dislikes, her friends, her special memories. With so much of the population dying off, the traditions, the culture and the family memories are disappearing. The NGOs have encouraged the creation of memory books to give credence to the lives of parents and the orphans they leave behind.
Everywhere we go someone has a personal story about AIDS. We drive to the center of town, to visit a carpentry shop and visit with Jimmy, a 20-year-old, who walks hand-in-hand with Muwa. The healthy looking boy calls Muwa mother because she helped him during what, he says, was “his darkest hour.” As we sit in the open-air shop with slabs of wood freshly planed to show the African grain, Jimmy shows us the chairs and tables he learned to make. Unlike many carpentry shops in Uganda where coffins are hewn, his shop focuses on the needs of the living, and that is where Jimmy’s focus now lies.
 He said his father died of AIDS last year. His mother and her youngest child, four years old, went back to her village, and she could not take him, because her family could not feed another mouth. Jimmy has no idea where his five other siblings are and he says he misses them very much.
He said he remembers despairing, crying, down on his knees, cursing his fate, the day his father died. "When that day came, I had no life. I had no future," he said. "A friend of mine told me about a place where they train AIDS orphans." He went to the PLAN offices and found Muwa, who got him a job as an apprentice at the carpentry shop. Smiles and self-esteem are a new part of his picture now, and he looks forward to the day when he will leave Tororo and find another town where he can set up his own shop. A hand-made chair will sell for 1,700 Ugandan shillings, or about 96 cents in US money, he said. "The greatest part of me, what I have, is I stand on my own feet," he says. Muwa says AIDS orphans often have a better life after their parents die if they can be part of a program like PLAN’s because they are free of the enormous task of taking care of a sick elder.***** We travel on, this time to the local community health clinic run by PLAN International where members of a Post-Test Club are meeting on wooden benches under a large shade tree. They are expecting us, and are ebullient. The dozen members of the club are prepared with the drama, poetry and songs about AIDS that they take to their community centers and parishes to educate their neighbors while trying to dispel the stigma that AIDS brings with it.
Both HIV positive and negative members of the community are part of the Post-Test Clubs; that way some of the stigma is lessened. PLAN tests more than 100 people for free each month, and they receive their results in one hour. No matter what the results of the test, the patient receives HIV/AIDS counseling. "Counseling is even as important if you are negative, and if you are positive, you learn how not to infect others," one woman says. If PLAN does not conduct the free testing, villagers would have to wait for the government to perform a free test, but that opportunity only comes once a year. Otherwise, to be tested one must pay 10,000 Ugandan shillings to have it done at a government-run clinic.
These Ugandans are aware of the benefits of testing. "If you are tested you have a free mind," says one man. "Some members of the club have died, but the lives of those who live have improved."
"A contributing factor to the high death rate is poverty," says a counselor. Often, the men and women and children who test positive are so sick they do not have the energy to feed themselves.
One HIV positive member of the Post-Test Club, a sergeant in the Ugandan army, says he came home when he was diagnosed after being sick. He is succinct about the hardship brought on by the virus, and asks PLAN to distribute more food. "Those people who suffer AIDS in this country, there are lots of loopholes -- no food, too sick to work the fields, lack of good food," he said. "Many people are dying. The heart needs warming, needs tea. You struggle among the extended family for a small amount of food."
Muwa explains that PLAN provides food only as a supplement to help the family gain strength to take care of itself. "There is not enough money in the world to give you the food you need," she replies.
Another woman says life was a lot grimmer before PLAN came to Tororo. “In Uganda, we feel lots of suffering before PLAN came. With counseling we are very happy and I was made strong,” she said. “For those of us who are sick, the fathers gone, women are alone with 10 children—When I die, what do my children do? If you can look from the side of the children, I beg you to do whatever you could do.”
Another woman is also plaintiff. "When your husband dies and leaves you alone with the children, he leaves you a grass-grown house but no one to cut the grass or tie the house," she said.
Worthington said PLAN’s ability to assist is limited. "It is your strength and the strength of your community that is the solution for the community," he said. Muwa tells us later that there were 14 deaths this week in PLAN-sponsored families, clearly showing the limitations.***** We leave for another homestead with a Ugandan nurse who works for PLAN International. She is dressed in a hot pink uniform with a small lace-trimmed hat that tops her fragile frame. She is less than five-feet tall, but her small stature rises to the enormous job she undertakes. At our first stop to the bush that day, we visit a woman in the latter stages of AIDS, who waits for us outside her tukul in the hot sun. After taking her vital signs, the diminutive nurse dispenses pills – some for malaria, some for influenza, some for anemia, and some simply for pain. The nurse can only treat the opportunistic infections because there are no medications to distribute to stop the toll on the immune system from the HIV virus. ***** It’s not all depressing though. There are some great success stories, too. Our last stop during our two days in the Tororo District is at the neatly gardened brick house of the Rev. Jonan Ayese Okoth and his wife, Pherry. The 65-year-old former school teacher and headmaster is now retired but works full time as the archdeacon of the Charismatic Episcopal Church of Uganda doing missionary work in the community. He talks lovingly of Christine Aguga, his daughter, a schoolteacher and one of his 11 children, who died of AIDS on July 7, 2000. She returned home to die when her husband died of the virus. In Okoth and his wife’s care, she left her three children – Victor, 13, Everline, 11, and Dorreen, 9. "It comes very hard," he says, showing us photographs of his daughter. “But when it comes, you need to be ready.”
Before Christine died, she left all of them her memory book (see below), which the reverend says is a gift they cherish every day because it teaches them much about Christine that they didn’t know. And just as important as the book, he says, is the gift of having his grandchildren by his side.
 Memory Books - A Snapshot of a Life
By Annmarie Christensen, Director of Publications
Christine Aguga Owor's voice speaks from the grave through her memory book. This diary that she created before she died of AIDS allows her parents and three children to visit with her daily.
Christine Aguga was born May 9, 1968. She came from a tight-knit, religious family, who encouraged her to follow her dream to graduate from college and become a teacher. She was aware of the dangers of HIV/AIDS but was shocked when she was diagnosed as being HIV positive in September 1993. She was tested a second time, and that confirmed the first positive diagnosis. Afterwards she walked along the road, in a daze, hoping to be hit by a car. "I was walking carelessly, wishing that even some car could come along and knock me dead, to be registered as having died of a motor accident! Poor me!" she recorded in her book. It was not to happen.
After her husband died in July 1998, she moved back to Tororo with her three children to live under the care of her parents. With the help of a friend, she wrote her diary, called a Memory Book, to pass down her heritage to her children. It is specifically addressed to one of them, Akoth Everlyn.
Christine Aguga died in the prime of her life. Following are excerpts from her Memory Book:
Thoughts on Life and Things I Believe In
"There is much more about life than we see and know. Life above all is a gift given to us by God. Being alive means discovering, and being alive means making."
"You may see things which no one else has because we each look at the world through our own eyes."
"Look at life. Look at your life. There is a world for you to discover; there is a world for you to develop. You can determine to make life what you want it to be."
"When you grow up you discover that each person is unique. You must learn how to evaluate and choose what is good. This is when you discover and become more aware of you own powers and capabilities as you meet new situations or challenges in life."
"Sooner or later you ask 'why?' I want to know the meaning of life; Why are we here? Why does this happen? Why are things as they are? Can they be different? Above all, we do not know life until we live it and look at it, and listen to what it tells us!"
"...As you live this life, never forget to help the needy and also the habit of sharing whatever little you have with others."
My Likes and Dislikes
"Throughout my life, I have had several things I particularly like having -- as many friends as possible -- and therefore, being peaceful wherever I go."
"On the other hand, I also have a good number of things I dislike as follows: drinking and smoking...rumor mongers and liars--because they are likely to bring confusion in the community...I also dislike people who are generally undisciplined, especially children who do not listen to elders. I also dislike lazy people, especially those who do not want to work, expecting to receive from others all the time."
My Education
"I joined National Teachers College, Nagongera, and finished my two-year course in secondary school education. This was my original target. It doesn't go without mention that my education was a battle most especially because your father was against everything I would think of doing as far as my education was concerned."
"You should therefore remember that this last decision I made is what has made us what we are now - able to continue to live and support my children."
"Although the salary is quite minimal, I do believe it has done a lot in sustaining us till this time. I only continue to pray to God for a little more life, and if money was available I would desire to further my studies. Unfortunately, circumstances are not favorable."
Special Interests and Talents
"...Another of my talents worth mentioning is sports...When I was in Senior Two, I represented my school at the Girls National Post Primary Athletics Championships in both 200 metres and 400 metres races."
What I do in My Free Time
"Sometimes I love to spend my free time with my children sharing with them riddles and a bit of story telling."
My Health
"My health at childhood almost did not record any ailments though I believe I must have been suffering light fevers and malaria like any other children."
On being diagnosed as being HIV positive, after insisting she and her husband get tested, after his first wife died of "cancer of the uterus:"
"We went together, but the greatest shock of my life came when we were shown the results, and by the worst of luck both of us were declared HIV positive. Did I believe my ears?? I could not believe them and only insisted that blood be taken again for another test! ...
"...When the two weeks ended, we went to Baumman House but I consoled myself, saying the machines could even be faulty!! We made our way back, but I was not myself. All my hopes had gone. I even did not see the use of going back to college for my second year. Who could I talk to or share with this disastrous condition of my health?? Of course, Nobody!"
My Hopes for Your Future
"As regards for your future, I really have high hopes that if you look at the challenges about life, then you ought to be very serious with your studies, accompanied with a high standard of discipline."
"I do expect you to take serious note of my health situation recorded earlier on in this book, and always know that this world has challenges and hardships to come by. You should also have time to look at your family background and improve the quality of life and the length of life you should live."
"... However, following the story you already know about your family and particularly in relation to its downfall, I have decided that I should leave you in the hands of my parents and relatives with whose guidance I expect a bright future for you."
"Above all, following much of my own story in this memory book, I expect you to get sensitized to the dangers of HIV/AIDS infection in the world and beware of what is around you and guard against these dangers. Work very hard, keep a high standard of discipline and you shall have a better future."
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