Saturday December 1 2012

A tale of high and low with the virus

By Stephen Otage

I found out I was positive four years after my husband died. The thought of my children surviving in this world minus me was devastating. I wonder if my husband knew he was positive but was scared to tell me.

These are words of Ms Filder Anyek. Her husband died in 1998 after a long illness that saw the family go through a hell of experience and travelled from Kampala back to Kitgum and again back to Kampala. She learnt about her HIV status when a woman informed her about the possibility of getting support for the orphans from Reach Out Mbuya.

“I went there and I was told if I wanted support, they first had to test me for HIV and if I was found positive, that is when I would qualify. I obliged. I was counseled and told to go for the blood test in Kiswa teenage home where I was found to be HIV positive.”

“I could not believe what I had just heard. I asked myself: Why did my husband die in 1998 without telling me he had HIV! What will I do with these children! I went straight to my bed, lay there whole day and night,” she recounted, adding, “ Later in the night, I told myself since these people said I would get support if I was found to be HIV+, let me take the results and see what they will do.”

When she presented the results to Reach Out Mbuya, she was assured of help and a file was opened for her to enroll on treatment.

In 1993 at the height of the LRA insurgency, Anyek’s husband Patrick Nyeko decided that they migrate from Kitgum to Kampala for refuge. They settled in Kinawataka, a Kampala suburb. Her husband got a job as a welder in Gomba Motors. They produced three children but in 1997, her husband fell sick, rapidly losing weight from 69kgs to only 49kgs. She recollects that when the situation got out of hand, she was forced to start fetching water to sell within Kinawataka to raise money to support the family. When the going got tougher, she resorted to begging.

“I picked my husband’s medical file and started moving around with it asking people for help until one day I met a Muzungu (White man). I deceived him that my brother was terribly sick and he offered to help,” she says.
The man offered help and provided money on a weekly basis to buy food and basic household supplies. However when her husband’s illness worsen, she decided to send him to Gulu.

“The Muzungu told me that it was even better for him since the organisation he works for ran Lacor hospital. He went into his office, picked a piece of paper and scribbled a letter in Italian and told me to tell my ‘brother’ to travel to Lacor hospital the following day and hand the letter to the administrator. He offered transport of Shs50, 000,” she says.

“I escorted him (husband) to the bus and when he reached Gulu, he rung saying he had reached safely but did not have anybody to look after him although he was getting free treatment and meals.” “That week when he was in Gulu alone, I did not feel comfortable. I followed him.”

Nyeko was operated on and fluids drained from under his ribs and two weeks later he was due for another operation but it could not be performed because his condition had deteriorated. However, after the operation, the story of Nyeko’s ailment took a twist as the doctors advised for termination of his life because they “had realised that he could not live any longer.”

“As I was washing clothes in the hospital compound, I was shocked to see Patrick return looking terrified with all his clothes packed. I asked him what had gone wrong and in a very low tone, he told me: those people say they want to help me rest but they want your consent so that when I die, they will help you with burial expenses like transporting the body for burial,” she narrated, tears filling her eyes.

I told him “since you have your mother and sisters, let me take you to the village. You are not going back to that theatre,” she says.

By this time, Ms Anyek still did not know what her husband was suffering from.
She says for the next two weeks, doctors refused to attend to Mr Nyeko. “Doctors would come, open his file and walk away until one lady who was also nursing a patient asked me to transport my Patrick back to the village,” she says.

A kind doctor at the hospital gave her Shs10, 000 that she used to transport her husband to Kitgum.
“When we arrived in Kitgum, I was disappointed by his mother and brother. They demanded that I transport them to Kampala immediately to collect his property because they had been informed that he had bought a sewing machine, sofa sets and a radio.” She also learnt that her in-laws had approached a witchdoctor who said she was responsible for the husband’s ailment.

At this point, she did not have any money left, so she returned to Lacor hospital, where she did casual jobs like washing clothes and digging in people’s gardens from where she was able to raise Shs12, 000 for transport back to Kampala. On her return to Kampala, her husband sent a letter instructing her to keep the children and never to step at their home because her mother in-law would kill her.

Once back home in Kampala, she sold the sewing machine to raise rent of Shs7,000 for a mud- and-wattle house. She started brewing local potent gin and occasionally cooked food for builders in a construction site to raise money.
“Life was impossible; we lived from hand to month”

It was only after getting support for the orphans from Reach Out Mbuya that life again started to look bright.
Because of the constant back ache she suffered, doctors at the Centre advised her against brewing and she was offered a job as a translator since she knew a bit of English and Swahilli. “But I turned it down because sometimes patients would tell me something and I tell her different things all together. But I was given a job as a cleaner,” she says.

Ms Anyek biggest worry is dying and leaving her children behind. At times she wants to go back to the village but the fear of a negative reaction from her husband’s relatives keep her in Kampala.

Ten years after enrolling for treatment, she is now employed as a community ARVs TB Support staff looking after 72 HIV clients within Kinawataka community by occasionally visiting them to monitor how they are responding to treatment. “I have no father and mother. All my life now depends on drugs and this job. What I can tell people out there, if you test positive, start medication immediately. Those who are negative, work hard to stay negative.