A strong mother supports a bed-ridden daughter and two ailing sons
Profile by Armando Gallardo and Iain Guest (August 2015)
During his 2015 fellowship in Vietnam, Armando made several visits to the family of Nguyen Van Xoan and his wife Pham Thi Do. Each time he would come away feeling that the burden of Agent Orange falls most heavily on mothers. It’s not that fathers are uninvolved – just that mothers seem to feel the anguish more deeply. Mothers are the primary caregivers. They also need caring for.
Nguyen Van Xoan is a former veteran. He was poisoned by dioxin after he drank contaminated water while serving in the army in Quang Tri province. He remembers it like this: “I saw a plane drop spray over the forest and saw the forest burning. I covered my face. I drank the water. I thought the water came from the rain. It was fresh and did not seem dangerous.”
Mr Xoan was invalided out of the army in 1979 because of health problems that seemed minor at the time – headaches, coughs, fatigue. But he did not improve and in 2007 he was certified as an Agent Orange casualty by the Vietnamese government. That year he began to receive compensation of 2 million Dong a month.
Mr Xoan and his wife Pham Thi Do had their first child soon after the war ended. The child died from “brain damage” which they now assume was linked to Agent Orange. The second child died at birth from a miscarriage. The next two children were born healthy and went on to marry. Their photos hang proudly on the wall.
Their first child to survive with AO complications, Trung, was born in 1979. Trung enjoyed a normal childhood until his legs began to fail him. Today, the arches under his feet are malformed, and this prevents him from walking properly. When we arrive to visit with the AEPD outreach worker that oversees this family, Trung shows us photos of his father visiting the graves of his friends who fought during the war but did not make it home.
Toan the Craftsman
Trung’s younger brother, Ngyuen Van Toan, born in 1995, suffers from similar complications, although his legs are more severely malformed than those of his brother. For a while Toan tried to walk, but as his legs got worse his classmates began to make fun of him. This left his parents with no other choice but to take him out of school. A few months passed and the doctor informed them that Toan would need a wheelchair for the rest of his life. Toan and his brother also share the added burden of hemophilia, which Toan contracted at the age of five.
Toan has much to complain about, yet he shows no resentment and has a winning smile. He is proud of his father – veterans in Vietnam are treated like heroes – but he also wanted desperately to stay in school. “I do not blame my father,” he says. “I am proud of him. But I faced many social barriers at school. Students did not play with me. I then developed a problem with one leg and was forced to use a cane. My grandfather used to take me to school. Then my other leg went bad and I had to leave school altogether.” He was 15, and just entering grade 9.
Undaunted, Toan turned to handicrafts. Helped by a mentor from the AEPD, who also attends the same self-help group, Toan learned how to make objects from simple materials that are easily available at the local store.
Toan has turned the house into a personal studio, with chopsticks, glue and varnish spread neatly on top of a table. He made a wonderful model of Hue University – the oldest in Vietnam – from hundreds of chopsticks and sold it to the Advocacy Project during our visit. It took three days to make and was his first sale. Quite an occasion! Toan’s dreams don’t end there. “I want to make web pages so that I can work from home,” he tells Armando.
‘Toan has much to complain about, yet he shows no resentment and has a winning smile. He is proud of his father – veterans in Vietnam are treated like heroes – but he also wanted desperately to stay in school. “I do not blame my father,” he says.’
Toan’s main problem comes from a lack of a computer and internet connection, but he does not expect that to hold him up for long. “I’m already reading about it from books I get from the market,” he added.
Toan’s older sister Luyen is another Agent Orange victim. She was born in 1992 with cerebral palsy. We meet with her on a stormy day as she lies in bed, pressing her nails into her hands and grinding her teeth. This, says her mother Pham Thi Do, is a sign that “the weather is about to change.” At times, Luyen squeezes her nails so hard that they cut her palms. Her parents give her a folded carton to hold in her hands to protect her from further cutting. Mrs Pham welcomes Armando with a smile when he enters Luyen’s room, and she continues to wipe her daughter’s face with a damp cloth.
Soon after, Mr. Xoan silently peeks into the room. Armando takes his photo and feels like crying. Mr. Xoan seems lost. His wife, in contrast, is totally engaged in caring for her daughter. “Taking care of Luyen is a full time job, 24 hours of the day,” she says. Indeed, for the next few hours we see how close the bond is between mother and daughter. Luyen caresses her mother’s arms and shoulder whenever she can, as if showing her affection and gratitude for the sacrifice made by her mother.
As Armando looks for anything that will help tell the family story, he notices a photo lying on a desk. The children are shown standing straight and tall, which is very different from the way they are in real life. Armando inquires, and Mrs Pham replies: “A friend of mine took our faces from different photos and photo-shopped them to the bodies.” Perhaps this is the way Mr. Xoan and Mrs. Pham want to remember their family: healthy, looking good and with no sign of the damn herbicide that changed their lives forever.
Phan Thi Do, at work in the fields
In one of Armando’s later visits to the family, he finds that neither Mr Xoan, Toan or Trung are not at home. “They went to Hue for their monthly hemophilia treatment,” says Mrs. Pham. The treatment costs 6 million Dong ($270.6), which is a huge amount, even though 80% is covered by insurance. On Armando’s next visit Xoan is at home but the family buffalo is nowhere to be seen. “We had to sell the buffalo to pay for the hemophilia treatment of Toan and Trung,” says Mr. Xoan. When one considers that this family only receives 5.3 million Dong in AO compensation a month, it is hardly surprising that they are constantly selling assets to cover the medical bills.
By this time, Toan has returned from the treatment in Hue. Luyen, as always, is lying on her bed in the darkened room. But this time Mrs. Pham and Trung are not to be seen. “My son, Trung, is still in Hue because he wasn’t doing so well when he was first seen by the Doctor. My wife is out in the fields harvesting the rice” says Mr. Xoan.
We notice rice seeds scattered all over the floor. It had been harvested the day before. Harvesting happens twice during the year and Armando had been hoping to take video footage of rice paddy, so Mr. Xoan agrees to take him out to meet his wife in the fields.
Up to now we have seen Mrs. Pham as a caregiver, mother and wife, but here she is in another demanding role. Her day started at 5 am and she has been out in the sun ever since, working the fields as if there was no tomorrow. We all go back to the house and Mrs. Pham immediately begins caring for her daughter Luyen. Armando is amazed at her strength.
Trung in hospital
Mrs. Pham explains that Trung is still in the hospital in Hue. Most of the AO families we meet are indoors because of their limited mobility, but here is a chance to meet a family member away from the home. Armando asks if he can visit Trung at the Hospital in Hue, which lies three hours from Dong Hoi. The family agrees and off they go. Trung looks healthier because of the blood transfusions he had been receiving, but is also worried.
“There’s a shortage of blood at the hospital so I might not get one for a few days,” he says. Indeed, when Armando asks the Doctor when Trung will get his next transfusion, he is told that no one knows because the availability of resources is so unpredictable. Armando then remembers something that Toan, Trung’s younger brother, had said at the house: “During the week I was in the hospital, I saw three people who died.” Apparently this is quite common. After some back and forth Armando is told that Trung would not be getting any transfusions over the weekend. Armando had no option but to leave, hoping for the best.
Armando returned later to Mr. Xoan’s house to say one last goodbye. It turned out to be a very emotional exchange. “This family will forever stay in my heart,” wrote Armando later. “I know that Linh, my interpreter and co-worker, feels the same. I hope we meet again soon.”
A Family Forced Apart
Update by Jacob Cohn (July 2017)
While reading our previous posts about this family, I’d been particularly intrigued by their son Toan, who developed a talent for making handicrafts and models despite losing the use of his legs at an early age; he’s converted part of the family’s home into an artist’s studio and has sold some of his work through AEPD. I was disappointed to learn from Mr. Thuan, on the way to meet the family, that we wouldn’t be able to meet Toan on this trip. My disappointment soon turned to horror as I learned more about the family’s current situation, possibly the worst of any family I’ve met so far.
Pham Thi Do and her husband Nguyen Van Xoan live around 15 minutes north of Dong Hoi, in a rural village—their home is larger than those in the city. The house appears empty as we arrive in the front yard, but Mr. Thuan walks over to a wooden bed next to the wall, and I’m startled to see the family’s daughter, Luyen, lying inert on a mat. Flies buzz on and around her body while a dog rests underneath the bed. Luyen is afflicted with cerebral palsy, and when Mr. Thuan speaks to her she stirs and sits upright slowly, with obvious difficulty. She can’t speak but seems glad to see Mr. Thuan, who stands with her for a few minutes until Mrs. Do arrives to invite us inside her home. The living room features large portraits of their two older (healthy) children at their weddings, certificates honoring Mr. Xoan’s military service, and commemorative plates bearing the likenesses of Ho Chi Minh and American War-era military leader Vo Nguyen Giap. Clearly Mr. Xoan is proud to have fought in the American War, in spite of all the pain that would come after.
Normally, this house would have five inhabitants: Mr. Xoan, Mrs. Do, Luyen, Toan, and Toan’s older brother Trung (who has difficulty walking). But for almost 6 months Mrs. Do and Luyen have lived by themselves. Toan, a hemophiliac, had a “shock” earlier this year—I don’t press for details about this but I gather it involved serious internal bleeding—and needed to be hospitalized in Hue, the nearest big city (around three hours away by car). Toan used to go to Hue every month for treatment, at great expense, but since his shock he’s gotten “worse and worse,” Mrs. Do says. Coming to the hospital from so far away is no longer feasible for him, and the family’s health insurance wouldn’t pay for a hospital stay longer than 10 days.
With no other option to prevent his son from getting even worse, Mr. Xoan has rented a room in Hue, where he and Trung now live full-time and care for Toan. By being close to the hospital, Toan can remain under observation and get the treatment he needs even without staying in the hospital full-time. But this means that Mrs. Do, now the family’s primary breadwinner, must care for her daughter alone as well as keeping up the household in her husband’s absence.
Mrs. Do tells me that one of the few bright spots for her this year has been her buffalo, bought with funds from AP donors last summer. The buffalo is in good health, and she’s used it for farming—much of her yard is taken up by okra plants. Her cousins and other neighbors have done what they can for her, helping with chores and with caring for Luyen, and she’s gotten help with money from the community and from organizations like the Red Cross, the Vietnam Association of Victims of Agent Orange/Dioxin (VAVA), and the Women’s Union. Still, this is a very difficult time for Mrs. Do, and I can tell everyone in our party is as touched as I am by what this family is going through.
Mrs. Do tells me that she’s in daily contact with Mr. Xoan by phone for updates on Toan’s condition, but she cannot visit Hue herself—that would mean leaving Luyen behind since she cannot travel. I ask Mrs. Do (delicately, I hope) if she sees a chance of Toan getting well enough to come home. “I’m not sure,” she responds; even if he were able to come home, he’d need to be in the hospital a lot, and traveling to Hue is time-consuming and expensive. Though none of us say so outright, her description implies that she may never get to see her son again.
The hot weather makes Luyen more “violent,” Mrs. Do says, but otherwise her condition is unchanged, and there’s not much that can be done for her except constant care and medication. Mrs. Do hopes to eventually move Luyen to the mental hospital currently under construction in Dong Hoi, where she can be cared for by professionals. “Does she have any understanding of what’s happening to her brother?” I ask. “Not at all,” Mrs. Do says.
Mrs. Do takes us to visit the buffalo in a nearby barn, where we’re joined by an officer from VAVA. The buffalo is due to give birth in July, and she asks me for AP permission to sell the calf—I respond that she doesn’t need permission, since the buffalo belongs to her. I resolve to think about any more ways AP could support her, though none of the problems she faces have easy solutions.
As we leave, Dat repeats something Mrs. Do said that wasn’t translated during our conversation but which obviously moved Dat: “Possessions cannot make humans, but humans can make possessions.” In spite of the hardships she’s already endured, Dat explains, Mrs. Do would give up all she has for her children.
Update by Karen Delaney (January 2018)
AP supported the family of Mr. Xoan in 2017 with a cow and calf. When we arrive they are happy to report that the cow had a healthy calf five months ago. The animals have been a great resource to feed the family. They use them for farming, which brings them rice and they also use the fertilizer for their garden, which has vegetables. They used to have pigs, but sold them because they were devalued at the beginning of the year – something I’ve heard from other families. Now they have 20 chickens, which gives them eggs and also meat.
I’m happy to see the whole family together, since on our last visit both sons were at the hospital in Hue. The oldest son, Nguyen Quang Trung (38), tells me he got back about three months ago, and his brother Nguyen Van Tuan (22), 20 days ago. They were both going back to the hospital the following day, accompanied by their dad, Mr. Xoan. He tells me he takes care of the boys, while his wife, Phan Thi Do, takes care of their daughter, Nguyen Thi Luyen (26). All three children are victims of Agent Orange.
Both Trung and Toan have to go to the hospital every month to get hemophilia treatment. They also have problems with their legs. Trung explains that his case is not as bad as his brother’s, who cannot walk and sits in a wheelchair. He can help the family in the rice field, and around the house. He receives only 800k per month as AO compensation. Tuan used to build houses with popsicle
sticks between the visits to the hospital when he was feeling well enough. However, a recent flood destroyed his art craft equipment, so he can no longer build the houses and sell for profit. He tells me he has written to the Australia Hemophilia Association to ask for support to rebuild his studio. He says it would cost under 5 million dong ($220 dollars). He receives 1.4 million dong a month for Agent Orange compensation.
I ask about the expenses of going to Hue every month. Mr. Xoan tells me that insurance only covers 15 days in the hospital, so when their health situation is worse and they have to stay longer in Hue, they rent a one-bedroom apartment near the hospital. He says it costs between 500k to 1 million dong per month. Their insurance only covers 150 million dong per year for both children, so with the cost of travel, medication and lodging, they barely make ends meet.
Their daughter, Nguyen Thi Luyen (26), starts screaming from her bed, which is outside the house. Phan Thi Do goes there and holds her hand to calm her down. Mr. Xoan tells me her situation hasn’t changed for years. She cannot recognize anyone, nor can she walk or speak. She receives 1.4 million dong in AO compensation, like her brother Tuong. Mr. Xoan, shows me all their paperwork, including birth certificates, AO compensation receipts and medical bills. He talks a lot to me, even though my translator is busy talking with his sons. He knows I can’t understand but keeps on talking to me, making eye contact and holding my hand. I ask about his health. Ngoc tells me he has nervous disorders and high blood pressure, so he needs to go to Danang to take medication three times a year. This also adds to their expenses. He gets 2 million dong per month as compensation.
Both parents are very dedicated to their children, but it seems to me that Mrs. Phan Thi Do does the heavy lifting. She is not a victim of Agent Orange herself, so she does most of the work around the house. Apart from caring for Luyen, who needs help with everything, she works in the rice field, takes care of the cow and both calves, grows vegetables in their garden and also collects iron to sell. When Mr. Xoan is away with the boys at the Hue hospital, she does everything by herself. Their two healthy and married children, one boy and one girl, sometimes help in the field, but not too much.
The picture of their two healthy children’s wedding is standing in the living room. When I ask about grandchildren, Mr. Xoan tells me they each have one kid who are both healthy so far. They are 14 years old and 5 years old.
At the end I ask if the animals have helped relieve some of the burden of this family, and the three men around the table (Mr. Xoan, Trung and Tuan) all start talking at the same time. Ngoc translates to me that they are very happy because apart from bringing them food, they can sell the animals in the case of an “emergency”, for example if the sons’ health deteriorates.
I take a picture of the whole family outside, knowing that they’ll be separated for the next month, as the boys and father go back to Hue the next day.
Later, I talk to the AEPD team and AP staff to see if we can help buy Tuan’s equipment to rebuild his studio. AP commits to help him with 5 million dong this year.