Teary tales of Mubende Ebola survivors

On Jan.11, the World Health Organisation (WHO), the UN agency in charge of global health, together with the government of Uganda, declared the end of the Mubende Ebola outbreak which was first diagnosed in September, last year. By the time the declaration was made, the health authorities had registered 142 confirmed cases, 55 deaths and 87 recoveries across nine districts including the central western districts of Mubende and Kasanda districts which were the epicentre of the outbreak. Out of the 142 confirmed cases, the two districts registered 113 cases and suffered 50 deaths. Among those invited to witness the declaration at the Mayor’s Gardens in Mubende Municipality were a group of people wearing blue T-Shirts. These were some of the 87 survivors. On the sidelines of the celebrations, Resty Namuganyi, 30, told The Independent’s Ronald Musoke of her chilling battle with the disease which unfortunately killed her boyfriend, Muzafaru Matovu.

Kampala, Uganda | RONALD MUSOKE | “My late boyfriend, Muzafaru Matovu, is the one who infected me,” Namuganyi told The Independent as she stared listlessly, paused for a moment and fought back tears. “We had no idea he had Ebola.”

Matovu who was involved in the business of roasting goat meat never halted his business when the disease was wreaking havoc in Mubende. Their village, Kikandwa, is in Kasanda District which borders Mubende to the east. But it did not cross their minds that Madudu sub-county in Mubende; the epicentre of the raging Ebola Sudan virus, was not that far away from their village.

So when Matovu felt unwell, he went to a nearby local clinic to get treatment for malaria.

“At first, it was like normal fever but just like the Ebola signs they were telling us about (headache, joint pain) but we still remained stubborn,” Namuganyi told The Independent, “We had no idea about the fact that this clinic had actually received a patient from Madudu, the epicentre of the Ebolavirus disease.”

Apparently, the Ebola patient had received some primary care at the clinic before he was whisked away and transferred to another health facility she does not mention. When Matovu, Namuganyi’s boyfriend arrived, she suspects, he was made to rest on the same bed where the Ebola patient had laid.

“No one knew that the Madudu patient had slept on this bed. This is where I think my boyfriend got infected from,” Namuganyi said, fighting back tears.

When Matovu got home with packets of painkillers and anti-malarial drugs, she continued treating him for malaria but his condition just deteriorated. So, she took him to another nearby clinic but his condition did not improve. Matovu stayed home in this condition for two weeks. That was sometime in October, last year.

By this time, however, the Ebola awareness teams had started sensitizing communities in Kikandwa and other villages across Kasanda District about the signs and symptoms of Ebola. It was at this point that the “doctor” at this clinic advised Namuganyi to keep Matovu at home so he calls an ambulance to take him to Mubende for testing.

“The ambulance arrived in the evening.” The Ebola signs (bleeding and diarrhoea) had started manifesting. Luckily enough, the ambulance arrived and Matovu was driven to Mubende Regional Referral Hospital.

He was tested for Ebola and results returned positive. He died a few days later. “The burial team brought Matovu’s body back to the village and he was buried under supervision,” Namuganyi tearfully told The Independent.

“My boyfriend was a goat meat roaster. When he got sick, people within the community started peddling lies; they said he had probably stolen a goat and the owners had bewitched him. We could not believe it. We thought he had ‘normal malaria.’”

“No one ever thought he had picked Ebola. That is why he was able to infect so many people. We never believed it. His friends kept coming around home, we would even touch him. Even at the clinics, his friends would visit him; we would touch him and wish him a quick recovery.”

“I am sure everyone who got Ebola in Kikandwa got the disease from Muzafaru (Matovu). This is because we never believed in the Ebola story.”

Namuganyi’s ordeal

She says her own turn of suffering from Ebola would start three days after her boyfriend’s burial. “I started feeling unwell; I had a headache, fever and dizziness.” Interestingly, although the medical personnel had marked her as a contact and kept coming home to check on her, she kept reassuring them that she was in good health.

“I did not want to tell them I was sick because people kept telling us that whoever is taken to Mubende is injected with questionable substances and people die.”

“There was a lot of misinformation in our community; they were telling us that there was no Ebola; rather they just wanted to harvest our internal body organs. They were telling us they harvest kidneys and export them.”

“So I would tell them I am fine but the reality is that I was unwell.” Meanwhile, the late Matovu’s friend known as Kamadha Kasule had fallen ill at the same time Namuganyi felt sick.

Unlike her, Kasule immediately reported to the health authorities as soon as the signs started manifesting (joint pain and headache). The ambulance arrived.

“But, as they were taking him away, Kasule intimated to the medics that even I was actually sick; that I was just lying to them,” she said.

“Kasule knew because he used to live in my neighbourhood. The medics came back for me. I insisted that I was fine but this time they sat me down and counselled me. I eventually allowed and they called for another ambulance.”

“They picked me up and another young woman in my neighbourhood. We were then driven up to Mubende Regional Referral Hospital where the Ebola treatment unit had been established.”

At Mubende, the medical personnel took Namuganyi and the others’ blood samples. The results returned positive. She told The Independent that she was in shock. She lost consciousness. “A few days later, I presented with all the Ebola signs; vomiting and diarrhoea but both the vomit and stool had no blood.”

Mixed emotions at Mubende Hospital

She says the medical teams immediately started taking care of them. “There was a lot of care. We had lots of food and drinks. I discovered that the things I had feared of ‘funny injections’ were not there.”

“Our appetite was really low but the doctors would come at our beds and talk to us in a friendly way. They would say: ‘Resty, at least take a little energy drink.’ This sense of care really made us have hope.”

Namuganyi told The Independent that she is particularly grateful to one white doctor she only calls “Tom.” “He was really friendly and genuinely cared for his patients. He would come close to us and Kubonga with us (greeting with fist-bumps).”

“This really kept us hopeful. I kept on wondering why this white man comes around and encourages us to eat and drink. We eventually got the courage and took all the drinks and food as well as treatment.”

But it was not always rosy in the Ebola treatment unit.

She recalls the first few days inside the treatment unit. She remembers the confirmed Ebola patients; both female and male patients, “getting dumped in one ward.”

During the time Namuganyi was inside that ward she saw two close friends die. “One of them was my late boyfriend’s brother. He really struggled for life until he passed on. “This shocked me so much that I even passed out. I knew I was next,” she says.

“All these dead friends were from my village of Kikandwa.” She says she immediately called her sister who lives in Mubende Municipality to do something about her harrowing situation. “I asked her to talk to any doctor she knew at the hospital so that they could take me out of this particular ward.”

Fortunately for Namuganyi, after about 10 days in Mubende Hospital’s ETU, the medics checked for the Ebola virus and found her negative. She was given the all clear to go back home. “It was one of my happiest moments in life, she told The Independent.

Stigma in the community

But, if Namuganyi and other Ebola survivors thought beating Ebola in Mubende had ensured a new lease of life, they were wrong. They were disappointed the moment they got back to Kikandwa.

“We really suffered; we were stigmatized to the extent that I wished I had died of the disease,” she tearfully told The Independent. “The people including our long time friends would avoid getting into contact with us.”

“Even when you went to the shop to buy groceries, they would separate the money we had given them from the one that was from ‘normal people.’ While we were out of sight they would then dip the money we had given them in buckets of Jik to disinfect the money; they would wash this money like you wash your clothes.”

Namuganyi says the stigma only subsided when the Ebola awareness teams came back to our communities and started sensitizing people against stigmatizing the Ebola survivors. “That is how we got a bit of relief,” she says.

At the Jan.11 event at the Mayor’s Gardens in Mubende Municipality, even as Dr. Jane Ruth Aceng, Uganda’s Minister of Health, punched her right fist in the air as she triumphantly declared the country free from active Ebola transmission, for Namuganyi and the other 86 survivors, life is far from getting back to what it used to be.

She says she lost her job at the Sawmill where she was employed as a cook before she got sick of Ebola. “Since I recovered, I have never got back the job. It is like I was terminated,” she says as she stares blankly in the distance.

“We were two cooks at the Sawmill. I used to do the night shift while my colleague worked during day but my immediate supervisor who lives in the same area with me has never said anything to me. There have been moments I wished Ebola had killed me.”

She says besides being jobless, she is worried of running out of the food she was given as part of the recovery package (60kgs of rice and a few kilos of beans) when she was discharged last November.

But livelihood loss is not the only issue that preoccupies her mind. She told The Independent that it might take a long time before she finds love again. She says most female Ebola survivors in Kikandwa lost love.

Namuganyi says the stigma is still rife in her community.

“We no longer have men who approach us for romantic relationships. So we are not only struggling to find employment but even those potential men who would fall in love with us and offer us support are now shunning us.”

In an attempt to support one another but also lobby government and other well-wishers, the Ebola survivors in Kikandwa have formed an association known as Kalwana Ebola Survivors Association.

“The people in our community and everyone else in Uganda need to know that Ebola survivors are now free from the disease. Our employers need to accept us back.

She says philanthropists should come to the rescue of Ebola survivors by supporting their community-based organisation,” she told The Independent.

Bernard Bwambale, 28, a trained nurse and survivor from Kikandwa in Kalwana sub-county in Kassanda District is the head of the association. He told The Independent that he founded the association to bring together the 45 Ebola survivors as well as the widows, widowers and orphans of those who died.

Besides continued sensitisation about the seriousness of the disease, Bwambale says the association seeks to protect the survivors’ mental health. He adds that the association intends to approach the government for livelihood support since most of them lost their jobs.

For Namuganyi, her wish is that government or any other well-wisher comes along and injects cash in the association so the survivors take loans at friendly interest rates so they run small businesses to help them earn a living.