A long silence...
It’s been a while since I updated this thing and despite eye-witness accounts to the contrary, I have been working. In fact, I’m providing photographs just to prove it.
I spent a night up in Lira, a northern town at the southern edge of the territory roamed by the Uganda’s Lords Resistance Army rebels. The town is home to Uganda’s first and only battered women’s shelter, where women who are being terrorized by their husbands or family can take a break, make a decision about what they want to do: leave, stay or send their abuser to court.
The most interesting part of the north was getting a chance to see the area that the UN has called the world’s most forgotten humanitarian crisis. For the past 20 years, the LRA has absolutely terrorized the region, abducting and conscripting children, burning, looting, raping, pillaging. They seem to have no political purpose, other than using their weapons to cause mass unrest. The government has forced hundreds of thousands of people out of their homes and into internally displaced persons camps, ostensibly for their own protection. But then they simply left them to fend for themselves, without property, farms, businesses, homes, water, electricity or even basic sanitation. For the past 20 years, the children have undertaken “night commutes,” sometimes walking dozens of kilometers to reach night shelters that protect them from raids by the rebels. Their families have lived with the upheaval, moving in and out of camps depending on the security of the area. (This is often hard to gauge. At the moment the LRA is being blamed both for raids in southern Sudan and attacks in northeastern Congo.)
The problem lately has been the government soldiers stationed in the area: they’re not being paid, apparently, so they’re taking it out on the people living up there. Then there’s these red-suited volunteer groups, who are given a stipend of some sort by the local community and a very large weapon. According to Hellen, the police superintendent who runs the shelter, women and children are incredibly vulnerable to these soldiers. We saw one, off-duty, harassing a woman who was trying to pass a checkpoint with a basket of vegetables. Then we met 12-year-old Grace, who was raped by a soldier while she was out collecting firewood for her family. She’s now pregnant.
Then I spent a couple afternoons at “Reach Out,” an HIV clinic that’s being touted as the model for AIDS care by the good, hardworking people at UNAIDS. (SEE STORY BELOW) The clinic is run out of a Catholic church – presenting the obvious problem that they believe in treating the disease, but not preaching prevention by using things like, say, condoms – but it has a holistic approach that cares for virtually every area of a patient’s life once they’ve contracted the virus. Body, mind, family, community is their motto. On the body front, they run a clinic every day and make home visits one day a week. They give out drugs for free and can enroll patients on lifesaving anti-retrovirals (ARVs) for free. They also run a World Food Program feeding program that hands out a basket of food once a month to clients who have been identified as unable to feed themselves or their families. When clients aren’t eating, their drugs actually become more lethal and depending on their health, some are not able to work. Others are overwhelmed by caring for themselves and their children, who are often also HIV-positive.
On the mind front, they offer adult literacy classes and training programs for women and men wanting to learn tailoring. They offer microcredit loans to help set up small business and pay school fees for children who qualify under the “Operation School Fees” program. From a community perspective, they train volunteers to do home visits, have clubs and programs for HIV-positive adults and clubs for children or teenagers of positive clients. Like I said, it’s a holistic approach and costs somewhere in the neighbourhood of $2 million for some 2,000 clients. That’s a lot of cash, almost a thousand bucks per client per year. (Probably petty cash when we think about what we cost our Canadian health care system on an annual basis.)
We went on a home visit – five of us; I hate crowds when I’m trying to be a journalist – to see a young man who’d come to the clinic the previous day in such a stupor he couldn’t even speak. On the Saturday his baby daughter had died. On the Sunday his wife had left him. On the Monday he appeared at the clinic for an HIV test, which came back positive. When we saw him, he was at least speaking, but still seemed confused. He was literally wide-eyed and seemed to have trouble following what was going on around him. He was skin and bones: when he got up to walk for the doctor, he had to hold up his pants, as they seemed to be about four sizes too big. His clavicle bone jutted out and his cheekbones were so sharp they could have cut something. He had been fevered, suffering from malaria, diarrhea, dehydration. The clinic gave him four pills, we left him with three more, plus oral rehydration salts. I suddenly understood why some AIDS patients do not take their medications: they can’t remember to take them, can’t remember when they’re supposed to take them, can’t keep them down. It seemed like the man’s aunt was completely overwhelmed and confused: which one was taken in the morning, which was taken twice a day, which was for diarrhea and which was for the fever?
Then I finally got around to seeing a dance troupe made up of kids who’ve lost parents or been abandoned. One had walked all the way from Kenya after losing his parents to AIDS. Another had come to the dance troupe after her family’s hut was hit by lightning and her entire family burned to death. Others did not have such dramatic stories, but ended up on the streets in one way or another. They were actually incredibly talented, led by a 24-year-old who’d become fed up with being exploited as a musician and had gone out on his own. Now they live – 30 of them – in a government building. Unfortunately they have almost no money. He pays for their school fees, food, clothing and other basics out of the profits of private drumming lessons and the few thousand shillings they have left over from a weekly gig at a local hotel. Essentially they’re only a year old, but they’re in risk of collapsing.
So yes. I’ve been working. And in my final week, I hope to visit a home for abandoned babies, known as “thrown” babies, and finish up some interviews on “Memory Books,” scrapbooks written by parents dying of AIDS for the children they leave behind.
***
HIV patients care for others who have virus; Reach Out volunteers find simple ways to solve problems vexing larger clinics.
By Karen Palmer, UGANDA
Special to the Star
915 words
14 May 2006
The Toronto Star
A15
Copyright (c) 2006 The Toronto Star
On an unseasonably damp and chilly morning, most patients arrive breathless at Reach Out headquarters, weakened not by the virus in their veins but by the cruelly steep incline leading to the HIV clinic.
Nearly all clutch bags filled with pill bottles.
Annet Namayanja greets them with a smile, inviting each patient to step on the scales and see whether their weight shows they're thriving or sliding.
For these people, Namayanja is an inspiration.
After all, she weighed fewer than 100 pounds the first time she stepped into the clinic.
"I was almost dying. I was dying," she says, then giggles as she tells of gaining nearly 40 pounds since starting HIV treatment.
"What Reach Out has done for people living with HIV is beyond measure."
In a way, the clinic is run by patients for patients. Reach Out uses volunteers called CATTS - for Community ARV and TB Treatment Supporters - many of whom are themselves HIV-positive.
"With the number of people living with HIV in Africa about to eclipse 25 million, innovative programs like Reach Out are finding simple ways to solve some of the problems that plague larger, more expensive programs.
And as AIDS organizations gear up for the big August international conference in Toronto, Reach Out is being hailed by such organizations as UNAIDS and the Stephen Lewis Foundation as the kind of holistic service that works.
"Small is beautiful," says Dr. Margrethe Juncker, the Danish physician whose volunteer work got Reach Out rolling.
"It's important to keep close contact and a little bit of a family feeling, even with 2,000 clients."
Reach Out teams up with research programs to test patients' CD4 counts, which show the number of white blood cells in the immune system.
Local nurses receive intensive HIV training to become "medical officers" who work four days a week at the clinic.
On the fifth day, they sling backpacks over their shoulders, grab coins for the matatu bus and head into the community to aid patients too sick to visit the clinic.
"I've worked with the poor forever," says Juncker, who has hopscotched around the world, following her husband's rise through the ranks at the World Food Program.
"You learn that there's so much more to health than the physical problems."
In addition to offering free access to medication and life-saving antiretroviral drugs, the clinic operates a food distribution centre, a training workshop for tailors, a micro-finance program to help clients pay rent or set up small businesses and a school fees' fund to get their children into school.
Reach Out began humbly enough in 2001, when Juncker's husband was transferred to Uganda and she was looking for a place to volunteer while caring for their five children.
After being stymied by the rigid bureaucracy of most charities and non-governmental organizations, she teamed up with a group of nuns who were trying faith healing with destitute AIDS patients, essentially praying for them as they slipped closer to death.
She and her helpers rushed to get people the drugs that would save them and found more and more people turning up as they saw their friends and neighbours not only surviving but thriving. And right from the start, Juncker says, patients began gaining strength simply by seeing that someone cared about them and was looking out for them.
"It was a revelation, how much people can improve with a little TLC."
Dozens of patients offer testimonials to the power of the clinic, but the best evidence is sitting in the waiting room at Our Lady of Africa Church, where the clinic has taken over virtually every available inch of space.
Patrick Edamu, for example, has seen his CD4 count rise dramatically in the past year. Patients qualify for anti-retroviral therapy when their CD4 count drops below 250; they are considered to be very ill if it sinks below 100.
When Edamu first arrived at the clinic, his white-cell count was one. Now it is 137 and he smiles when medical officer Rosemary Atim asks whether he has any complaints.
None, he replies in Luganda. He only came to get a refill on the pills that are helping keep him alive.
The key with anti-retroviral therapy is keeping patients healthy enough to take their drugs and getting them to adhere to taking them on schedule.
The concern over adherence has kept many countries and HIV programs from distributing ARVs, because they fear patients on multiple medications will do themselves more harm than good if they're not carefully monitored.
Reach Out has an astounding rate of drug adherence: 80 per cent of the 618 clients on free ARV therapy have a 95 per cent adherence rate, thanks in part to CATTS counsellors who help patients sort out their medications and conduct home visits to ensure they are managing.
Meanwhile, start-up kits are being prepared to share with other clinics and Juncker is confident the Reach Out approach can be implemented almost anywhere.
"There's nothing really to it, except that it works," she says.
| Karen Palmer FOR THE TORONTO STAR CATTS adherence counsellor Moses Ogabe helps patients sort out their medications at the highly successful Reach Out HIV AIDS clinic. |
***
A mother's memories; The dog-eared pages of the scrapbooks may be smudged with fingerprints from repeated readings For young Ugandans orphaned by AIDS, they offer a precious link to the past
Karen Palmer
Special to the Star
1269 words
11 May 2006
The Toronto Star
A03
Kampala, UGANDA -- When Ivan Sekajjigo was a baby, he was so sickly with fever and convulsions his mother worried he would die.
With time, he grew into a precocious child who loved school so much he would happily set off for class seven days a week, but only if his best friend Henry accompanied him.
Yet what his mother remembers most about Ivan, now a strapping man of 18 and the eldest of five boys, is their shared love of local Ugandan music.
Whenever it came on the radio, Ivan would crank up the volume and belt out the lyrics, earning a reputation for his singing that caused neighbours to stop him on the street and request an impromptu performance.
Soon, these random memories, written in a spiral-bound scrapbook and decorated with a few faded photographs, are all Ivan will have to remember his mother, Betty Namubiru.
His father died of AIDS when he was only 5; one day the virus will claim his mother too.
These books, being written by HIV-positive parents across Uganda, said Jacquie Nabwire, who distributes the materials used to write the book through NACWOLA, a national coalition of HIV-positive women.
Known as "memory books," the scrapbooks not only have sentimental value, they often prompt HIV-positive parents to think about what will happen after they die.
Who will care for their children? How will they ensure any property meant for the children actually ends up in their hands?
Sometimes they even remind parents they have a lot to live for.
"They fear for their children if they die and leave the children behind. They don't want to give up on life," Nabwire said.
"We see more people seeking treatment for every opportunistic infection and joining campaigns for (access to) drugs."
The book's first chapter details the history of the parents' marriage, a subject that is not always the stuff of fairy tales in a culture where polygamy is still practiced and where men sometimes pay a bride price to a woman's family before marrying her.
The next few chapters are often the favourites among the children, their pages dog-eared and smudged with fingerprints from repeated readings.
The chapters outline their birth, the meaning behind their names, their days as a baby, then as a toddler, their school days and school chums, a fond or secret memory, and finally, their parent's aspirations for them as an adult.
Nazziwa Yudaya began writing a memory book for each of her four children in 1998 and has never stopped writing.
She was a co-wife, married to a man with a first wife who took most of his money and attention.
As she wrote, Yudaya began to realize that she had poisoned her children against his memory, blaming him in bitter tirades for bringing the virus into their home.
She also realized she knew almost nothing of the man who had fathered her children and infected her with HIV.
Now, she laughs, she uses every family funeral to collect up bits of information about the man she married.
Cousins sit in back rows, scribbling details about his days in nursery or elementary school, about his first jobs, about the lives of his ancestors.
The book has helped her prepare for the inevitable: the lifespan for a person living with HIV in Africa is about 10 years, but Yudaya is taking anti-retroviral drugs, which should help her live longer.
She has left a plot of land to her children, picked out a niece who will help them with their troubles or worries. She's even decided where she'd like to be buried.
"It was very painful," she said.
Her children were not surprised by her HIV-positive status, but they were upset by the book.
"At first, they cried," Yudaya said.
"I realized that they were thinking I was going to die, but I told them, 'I'm still with you.'
"I realized that they trust me, that I'm still useful. They're very supportive, asking after my health and whether I've taken my drugs."
Parents go through a special memory book training to help them decide first how to disclose their HIV status, then how best to communicate the memories, hopes and dreams for their children.
"This is not really a part of our culture," Nabwire said.
Ugandans rely on oral tradition to pass on the things they know, whether it's an old recipe or the story of how their ancestors came to live in one region or another, she said.
"Since the generations are not even existing - they're dying in the middle of their lives - we need to put it down," she said.
"It's a new culture we're trying to teach."
Many families delay writing the books, either because the parent doesn't read or write and needs help getting their memories on to paper, or because they simply don't have enough information to offer a child about their heritage.
"It's amazing," Nabwire said. "They really realize they know very little about their partner. Sometimes they know very little about their own family."
Some wait until they are sick before putting pen to paper; some wait a little too long.
"By the time they're ready, they're too sick. When you're not feeling well, you can't think of writing a book," she said.
"The major aim, even when you've passed away, is that when the child reads this, he sees you as a person who lived and had likes and dislikes, just like any other person," Nabwire said.
When a person is sick with AIDS, their final days are a slow misery of pain, and often leave a child with a skewed recollection of their parent.
That's a memory the book can help erase, Nabwire said.
"When you leave a book, it brings life to that miserable person that the child used to see all the time," she said.
"It puts life in a miserable situation that the child would otherwise remember for the rest of his life."
It also helps the child remember that there was a time before their lives were all about drugs and infections and extra chores and pitching in to replace a parent too sick to look after the home and children.
"They remember themselves as being involved in work throughout," she said.
"They don't remember whatever childhood they had."
For Yudaya, writing the book also made her realize that she can't wait until she's on her deathbed to pass on all of her wisdom to her children.
"For them, I have filled what I want," she said.
"Anything I think of for my children - every good thing I feel - I have to tell them."
Karen Palmer is The Star's stringer in Africa
I spent a night up in Lira, a northern town at the southern edge of the territory roamed by the Uganda’s Lords Resistance Army rebels. The town is home to Uganda’s first and only battered women’s shelter, where women who are being terrorized by their husbands or family can take a break, make a decision about what they want to do: leave, stay or send their abuser to court.
The most interesting part of the north was getting a chance to see the area that the UN has called the world’s most forgotten humanitarian crisis. For the past 20 years, the LRA has absolutely terrorized the region, abducting and conscripting children, burning, looting, raping, pillaging. They seem to have no political purpose, other than using their weapons to cause mass unrest. The government has forced hundreds of thousands of people out of their homes and into internally displaced persons camps, ostensibly for their own protection. But then they simply left them to fend for themselves, without property, farms, businesses, homes, water, electricity or even basic sanitation. For the past 20 years, the children have undertaken “night commutes,” sometimes walking dozens of kilometers to reach night shelters that protect them from raids by the rebels. Their families have lived with the upheaval, moving in and out of camps depending on the security of the area. (This is often hard to gauge. At the moment the LRA is being blamed both for raids in southern Sudan and attacks in northeastern Congo.)
The problem lately has been the government soldiers stationed in the area: they’re not being paid, apparently, so they’re taking it out on the people living up there. Then there’s these red-suited volunteer groups, who are given a stipend of some sort by the local community and a very large weapon. According to Hellen, the police superintendent who runs the shelter, women and children are incredibly vulnerable to these soldiers. We saw one, off-duty, harassing a woman who was trying to pass a checkpoint with a basket of vegetables. Then we met 12-year-old Grace, who was raped by a soldier while she was out collecting firewood for her family. She’s now pregnant.
Then I spent a couple afternoons at “Reach Out,” an HIV clinic that’s being touted as the model for AIDS care by the good, hardworking people at UNAIDS. (SEE STORY BELOW) The clinic is run out of a Catholic church – presenting the obvious problem that they believe in treating the disease, but not preaching prevention by using things like, say, condoms – but it has a holistic approach that cares for virtually every area of a patient’s life once they’ve contracted the virus. Body, mind, family, community is their motto. On the body front, they run a clinic every day and make home visits one day a week. They give out drugs for free and can enroll patients on lifesaving anti-retrovirals (ARVs) for free. They also run a World Food Program feeding program that hands out a basket of food once a month to clients who have been identified as unable to feed themselves or their families. When clients aren’t eating, their drugs actually become more lethal and depending on their health, some are not able to work. Others are overwhelmed by caring for themselves and their children, who are often also HIV-positive.
On the mind front, they offer adult literacy classes and training programs for women and men wanting to learn tailoring. They offer microcredit loans to help set up small business and pay school fees for children who qualify under the “Operation School Fees” program. From a community perspective, they train volunteers to do home visits, have clubs and programs for HIV-positive adults and clubs for children or teenagers of positive clients. Like I said, it’s a holistic approach and costs somewhere in the neighbourhood of $2 million for some 2,000 clients. That’s a lot of cash, almost a thousand bucks per client per year. (Probably petty cash when we think about what we cost our Canadian health care system on an annual basis.)
We went on a home visit – five of us; I hate crowds when I’m trying to be a journalist – to see a young man who’d come to the clinic the previous day in such a stupor he couldn’t even speak. On the Saturday his baby daughter had died. On the Sunday his wife had left him. On the Monday he appeared at the clinic for an HIV test, which came back positive. When we saw him, he was at least speaking, but still seemed confused. He was literally wide-eyed and seemed to have trouble following what was going on around him. He was skin and bones: when he got up to walk for the doctor, he had to hold up his pants, as they seemed to be about four sizes too big. His clavicle bone jutted out and his cheekbones were so sharp they could have cut something. He had been fevered, suffering from malaria, diarrhea, dehydration. The clinic gave him four pills, we left him with three more, plus oral rehydration salts. I suddenly understood why some AIDS patients do not take their medications: they can’t remember to take them, can’t remember when they’re supposed to take them, can’t keep them down. It seemed like the man’s aunt was completely overwhelmed and confused: which one was taken in the morning, which was taken twice a day, which was for diarrhea and which was for the fever?
Then I finally got around to seeing a dance troupe made up of kids who’ve lost parents or been abandoned. One had walked all the way from Kenya after losing his parents to AIDS. Another had come to the dance troupe after her family’s hut was hit by lightning and her entire family burned to death. Others did not have such dramatic stories, but ended up on the streets in one way or another. They were actually incredibly talented, led by a 24-year-old who’d become fed up with being exploited as a musician and had gone out on his own. Now they live – 30 of them – in a government building. Unfortunately they have almost no money. He pays for their school fees, food, clothing and other basics out of the profits of private drumming lessons and the few thousand shillings they have left over from a weekly gig at a local hotel. Essentially they’re only a year old, but they’re in risk of collapsing.
So yes. I’ve been working. And in my final week, I hope to visit a home for abandoned babies, known as “thrown” babies, and finish up some interviews on “Memory Books,” scrapbooks written by parents dying of AIDS for the children they leave behind.
***
HIV patients care for others who have virus; Reach Out volunteers find simple ways to solve problems vexing larger clinics.
By Karen Palmer, UGANDA
Special to the Star
915 words
14 May 2006
The Toronto Star
A15
Copyright (c) 2006 The Toronto Star
On an unseasonably damp and chilly morning, most patients arrive breathless at Reach Out headquarters, weakened not by the virus in their veins but by the cruelly steep incline leading to the HIV clinic.
Nearly all clutch bags filled with pill bottles.
Annet Namayanja greets them with a smile, inviting each patient to step on the scales and see whether their weight shows they're thriving or sliding.
For these people, Namayanja is an inspiration.
After all, she weighed fewer than 100 pounds the first time she stepped into the clinic.
"I was almost dying. I was dying," she says, then giggles as she tells of gaining nearly 40 pounds since starting HIV treatment.
"What Reach Out has done for people living with HIV is beyond measure."
In a way, the clinic is run by patients for patients. Reach Out uses volunteers called CATTS - for Community ARV and TB Treatment Supporters - many of whom are themselves HIV-positive.
"With the number of people living with HIV in Africa about to eclipse 25 million, innovative programs like Reach Out are finding simple ways to solve some of the problems that plague larger, more expensive programs.
And as AIDS organizations gear up for the big August international conference in Toronto, Reach Out is being hailed by such organizations as UNAIDS and the Stephen Lewis Foundation as the kind of holistic service that works.
"Small is beautiful," says Dr. Margrethe Juncker, the Danish physician whose volunteer work got Reach Out rolling.
"It's important to keep close contact and a little bit of a family feeling, even with 2,000 clients."
Reach Out teams up with research programs to test patients' CD4 counts, which show the number of white blood cells in the immune system.
Local nurses receive intensive HIV training to become "medical officers" who work four days a week at the clinic.
On the fifth day, they sling backpacks over their shoulders, grab coins for the matatu bus and head into the community to aid patients too sick to visit the clinic.
"I've worked with the poor forever," says Juncker, who has hopscotched around the world, following her husband's rise through the ranks at the World Food Program.
"You learn that there's so much more to health than the physical problems."
In addition to offering free access to medication and life-saving antiretroviral drugs, the clinic operates a food distribution centre, a training workshop for tailors, a micro-finance program to help clients pay rent or set up small businesses and a school fees' fund to get their children into school.
Reach Out began humbly enough in 2001, when Juncker's husband was transferred to Uganda and she was looking for a place to volunteer while caring for their five children.
After being stymied by the rigid bureaucracy of most charities and non-governmental organizations, she teamed up with a group of nuns who were trying faith healing with destitute AIDS patients, essentially praying for them as they slipped closer to death.
She and her helpers rushed to get people the drugs that would save them and found more and more people turning up as they saw their friends and neighbours not only surviving but thriving. And right from the start, Juncker says, patients began gaining strength simply by seeing that someone cared about them and was looking out for them.
"It was a revelation, how much people can improve with a little TLC."
Dozens of patients offer testimonials to the power of the clinic, but the best evidence is sitting in the waiting room at Our Lady of Africa Church, where the clinic has taken over virtually every available inch of space.
Patrick Edamu, for example, has seen his CD4 count rise dramatically in the past year. Patients qualify for anti-retroviral therapy when their CD4 count drops below 250; they are considered to be very ill if it sinks below 100.
When Edamu first arrived at the clinic, his white-cell count was one. Now it is 137 and he smiles when medical officer Rosemary Atim asks whether he has any complaints.
None, he replies in Luganda. He only came to get a refill on the pills that are helping keep him alive.
The key with anti-retroviral therapy is keeping patients healthy enough to take their drugs and getting them to adhere to taking them on schedule.
The concern over adherence has kept many countries and HIV programs from distributing ARVs, because they fear patients on multiple medications will do themselves more harm than good if they're not carefully monitored.
Reach Out has an astounding rate of drug adherence: 80 per cent of the 618 clients on free ARV therapy have a 95 per cent adherence rate, thanks in part to CATTS counsellors who help patients sort out their medications and conduct home visits to ensure they are managing.
Meanwhile, start-up kits are being prepared to share with other clinics and Juncker is confident the Reach Out approach can be implemented almost anywhere.
"There's nothing really to it, except that it works," she says.
| Karen Palmer FOR THE TORONTO STAR CATTS adherence counsellor Moses Ogabe helps patients sort out their medications at the highly successful Reach Out HIV AIDS clinic. |
***
A mother's memories; The dog-eared pages of the scrapbooks may be smudged with fingerprints from repeated readings For young Ugandans orphaned by AIDS, they offer a precious link to the past
Karen Palmer
Special to the Star
1269 words
11 May 2006
The Toronto Star
A03
Kampala, UGANDA -- When Ivan Sekajjigo was a baby, he was so sickly with fever and convulsions his mother worried he would die.
With time, he grew into a precocious child who loved school so much he would happily set off for class seven days a week, but only if his best friend Henry accompanied him.
Yet what his mother remembers most about Ivan, now a strapping man of 18 and the eldest of five boys, is their shared love of local Ugandan music.
Whenever it came on the radio, Ivan would crank up the volume and belt out the lyrics, earning a reputation for his singing that caused neighbours to stop him on the street and request an impromptu performance.
Soon, these random memories, written in a spiral-bound scrapbook and decorated with a few faded photographs, are all Ivan will have to remember his mother, Betty Namubiru.
His father died of AIDS when he was only 5; one day the virus will claim his mother too.
These books, being written by HIV-positive parents across Uganda, said Jacquie Nabwire, who distributes the materials used to write the book through NACWOLA, a national coalition of HIV-positive women.
Known as "memory books," the scrapbooks not only have sentimental value, they often prompt HIV-positive parents to think about what will happen after they die.
Who will care for their children? How will they ensure any property meant for the children actually ends up in their hands?
Sometimes they even remind parents they have a lot to live for.
"They fear for their children if they die and leave the children behind. They don't want to give up on life," Nabwire said.
"We see more people seeking treatment for every opportunistic infection and joining campaigns for (access to) drugs."
The book's first chapter details the history of the parents' marriage, a subject that is not always the stuff of fairy tales in a culture where polygamy is still practiced and where men sometimes pay a bride price to a woman's family before marrying her.
The next few chapters are often the favourites among the children, their pages dog-eared and smudged with fingerprints from repeated readings.
The chapters outline their birth, the meaning behind their names, their days as a baby, then as a toddler, their school days and school chums, a fond or secret memory, and finally, their parent's aspirations for them as an adult.
Nazziwa Yudaya began writing a memory book for each of her four children in 1998 and has never stopped writing.
She was a co-wife, married to a man with a first wife who took most of his money and attention.
As she wrote, Yudaya began to realize that she had poisoned her children against his memory, blaming him in bitter tirades for bringing the virus into their home.
She also realized she knew almost nothing of the man who had fathered her children and infected her with HIV.
Now, she laughs, she uses every family funeral to collect up bits of information about the man she married.
Cousins sit in back rows, scribbling details about his days in nursery or elementary school, about his first jobs, about the lives of his ancestors.
The book has helped her prepare for the inevitable: the lifespan for a person living with HIV in Africa is about 10 years, but Yudaya is taking anti-retroviral drugs, which should help her live longer.
She has left a plot of land to her children, picked out a niece who will help them with their troubles or worries. She's even decided where she'd like to be buried.
"It was very painful," she said.
Her children were not surprised by her HIV-positive status, but they were upset by the book.
"At first, they cried," Yudaya said.
"I realized that they were thinking I was going to die, but I told them, 'I'm still with you.'
"I realized that they trust me, that I'm still useful. They're very supportive, asking after my health and whether I've taken my drugs."
Parents go through a special memory book training to help them decide first how to disclose their HIV status, then how best to communicate the memories, hopes and dreams for their children.
"This is not really a part of our culture," Nabwire said.
Ugandans rely on oral tradition to pass on the things they know, whether it's an old recipe or the story of how their ancestors came to live in one region or another, she said.
"Since the generations are not even existing - they're dying in the middle of their lives - we need to put it down," she said.
"It's a new culture we're trying to teach."
Many families delay writing the books, either because the parent doesn't read or write and needs help getting their memories on to paper, or because they simply don't have enough information to offer a child about their heritage.
"It's amazing," Nabwire said. "They really realize they know very little about their partner. Sometimes they know very little about their own family."
Some wait until they are sick before putting pen to paper; some wait a little too long.
"By the time they're ready, they're too sick. When you're not feeling well, you can't think of writing a book," she said.
"The major aim, even when you've passed away, is that when the child reads this, he sees you as a person who lived and had likes and dislikes, just like any other person," Nabwire said.
When a person is sick with AIDS, their final days are a slow misery of pain, and often leave a child with a skewed recollection of their parent.
That's a memory the book can help erase, Nabwire said.
"When you leave a book, it brings life to that miserable person that the child used to see all the time," she said.
"It puts life in a miserable situation that the child would otherwise remember for the rest of his life."
It also helps the child remember that there was a time before their lives were all about drugs and infections and extra chores and pitching in to replace a parent too sick to look after the home and children.
"They remember themselves as being involved in work throughout," she said.
"They don't remember whatever childhood they had."
For Yudaya, writing the book also made her realize that she can't wait until she's on her deathbed to pass on all of her wisdom to her children.
"For them, I have filled what I want," she said.
"Anything I think of for my children - every good thing I feel - I have to tell them."
Karen Palmer is The Star's stringer in Africa
posted by Palmer in Africa at 12:30 AM
1 Comments:
I spent some my happiest and most peaceful moments and time in and around Lira; it was then very peaceful: no robberies, or rapes or murders. I visited almost every major trading center around Lira. And Lira had an excellent: infrastructure, hospital, working instituitions, schools & colleges, phone and TV services, well stocked groceries etc.; and civil order. But that was way back in the sixties and early seventies! Before Idi Amin!
Incredible! But that is how it was! I never ever thought my family would flee such a beuatiful place! But now, just the thought of even visiting Lira - horrifies me!
'They seem to have no political purpose, other than using their weapons to cause mass unrest'. Exactly! The LRA, right from the Alice Lakwena time, had no agenda. There only purpose seems to be: destroy snd cause chaos! And the world; the so called 'international comminity' just keeps quiete! They only take action when self interest is served; like in Iraq and Darfur - for Oil!
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