30/10/2017 1:05 PM IST | Updated 30/10/2017 6:47 PM IST

'It's Only A Matter Of Time': Why A Mother With Two Healthy Children Lives In Terror In Gorakhpur

Encephalitis kills four times the number of people that die in terror attacks in India.

HuffPost India

GORAKHPUR, Uttar Pradesh — Jaanvi Devi is terrified for her children every minute of the day.

The 32-year-old mother believes that her seven-year-old daughter Anchal and her four-year-old son Alok are risking their lives as long as they stay in Manbela village on the outskirts of Gorakhpur city.

Jaanvi's dilemma is that she has no way of leaving the village, which has been a hotbed of encephalitis, a deadly inflammation of the brain that kills hundreds of children in Uttar Pradesh, every year. The villagers call it "brain fever".

The soft-spoken woman with flawless skin and deep-set eyes, said, "We live in terror every day. I feel afraid all the time. My children could be dead tomorrow and there is nothing I can do about it."

"The fear never goes away," she said, pressing her chest. "There is always a heaviness in the heart that something bad is going to happen."

Jaanvi's remarks gave me a moment of pause. After a week of interviews, it was the first time I heard someone evoke pure terror while talking about encephalitis. The young mother's fears, however, are neither exaggerated nor farfetched.

Encephalitis does, in fact, kill four times the number of people that die in terror attacks in India every year. But there is little talk of the crisis that is consuming children from the poorest communities, enfeebled by malnutrition, poor hygiene and unsanitary living conditions.

In India, terror attacks claimed 289, 416 and 404 lives in 2013, 2014 and 2015 respectively, according to the Global Terrorism Index. In the same years, encephalitis killed 1,475 (2013), 2,012 (2014) and 1,501 (2015), the vast majority of them in UP.

When I asked her why she was terrified of encephalitis, Jaanvi said, "It's like we are surrounded by death. It's only a matter of time before it strikes. Today, it is the family down the street. Tomorrow, it could be us."

It's like we are surrounded by death. It's only a matter of time before it strikes.

Jaanvi said she didn't want to be counted among the mothers of Manbela village who have lost their children to "brain fever."

One of those grieving mothers is Champta Devi, who lost her daughter, Yashoda, three years ago.

"I was angry for a long time but I have nothing to say anymore. There's no point in being angry if you are poor. No one cares about us and nothing changes for us," she said.

Vidya Devi, who lost her seven-year-old son during the rainy season last year, is still inconsolable. "He was alive in the morning and dead by the evening," she said.

While Champta and Vidya continue mourning their children, two other mothers, Ramvati Devi and Lalti Devi, spend day and night taking care of their daughters, who are living with crippling mental and physical disabilities that often follow encephalitis.

As she helped her children out of their school uniforms, Jaanvi said, "I don't know who is suffering more: the mothers whose children are dead or the mothers who will have to help them defecate all their lives."

He was alive in the morning and dead by the evening.

READ: In Uttar Pradesh, 'Surviving Encephalitis Could Be Worse Than Dying Of It'

Stuck in Manbela

Encephalitis has terrorised eastern UP for almost four decades, with one government after another at the Centre and in the state playing the part of a bystander.

Over 11,000 people have died of encephalitis in the past seven years alone. Not only have the authorities failed to roll out an effective vaccination programme, nothing has been done to combat the unsanitary living conditions that become havens for mosquitoes carrying the Japanese encephalitis virus found in pigs and wild birds.

Take, for instance, Manbela village, home mostly to daily wage labourers from the lower castes, located in the constituency of Chief Minister Yogi Adityanath and just a few kilometres away from the Baba Raghav Das Medical College, the largest government hospital in the district.

Even though it is just a half-hour drive from the grand temple complex that Adityanath presides over, Manbela is choking in its own filth and swarming with mosquitoes. Almost everyone in the village defecates in the open, mostly in the fields surrounding their houses.

But sanitation workers rarely visit to either clean or fumigate the village.

The villagers told me they recently had the opportunity to complain about the unsanitary living conditions to three officials from Delhi, who visited them after the BRD Medical College made national news for running out of liquid oxygen on August 12.

Gujrati Devi, the village matriarch, recalled, "We all gathered under the tree by the temple. They asked us, 'Does someone come to clean the drains?' We said no. They asked us, 'does anyone come to kill the mosquitoes? 'We said no. They asked us, 'Do you have toilets?' We said no."

"There was someone who was writing everything in her notebook like you are but then she went away and nothing changed," said Gujrati.

On one sweltering afternoon and during a power outage, Jaanvi explained her desperation to leave Manbela village and the two obstacles in her path: money and her in-laws.

"You can see that we are keeping our house clean but the outside is disgusting. I blame everyone who throws garbage in the drains and the streets," she said. "You don't have to wait till nightfall to see the mosquitoes — just till four in the evening. It takes one mosquito to kill but here we have thousands."

You don't have to wait till nightfall to see the mosquitoes - just till four in the evening.

While Jaanvi and Ajay, her husband, agree about leaving Manbela, they cannot make the move on the ₹5000 he earns working in an auto agency. "The bigger problem is my husband's parents. They refuse to move from here and we cannot leave them behind. It would break their hearts," she said.

It's not that Jaanvi's in-laws don't know about the encephalitis threat. "They have seen the deaths in the village but they don't understand why sanitation is important. If I push too much, it creates tension in the house and even my husband tells me to stop," she said.

And what about vaccination? While the state government claims to have launched a vaccination drive for 88 lakh children in the summer this year, neither Jaanvi nor her husband heard about the drive despite their proximity to the city and the medical college. "There was no talk about it in the village. Do you know when is the next one? How can we find out about it?" she asked.

READ:My Daughter Was Not A Number, Cries A Father Of The Forgotten Gorakhpur Tragedy

Fighting back

During one of our conversations, Jaanvi recalled both the joy she experienced attending school and the heartbreak of forsaking her education. Instead of making a fuss, she quietly quit school, married the man that her father chose and went to live with her husband in Manbela village.

Over the course of her 32 years, Jaanvi has made her peace with other people making the important decisions of her life, but she refuses to accommodate the grim threat of encephalitis.

Even though she has failed to move her children out of Manbela village, Jaanvi is still fighting back. In a voice ringing with pride, the young mother narrated how she persuaded her husband to build a toilet as well as a bathing area inside the house.

"It's the only way to protect the children against mosquitoes. Defecating in the open is disgusting especially during the monsoon when the fields are filled with water. There are mosquitoes that bite when you squat," she said.

Defecating in the open is disgusting especially during the monsoon when the fields are filled with water.

Jaanvi's house is among the handful in Manbela village that have a toilet. Ajay says it cost them ₹80,000 to build both the toilet and the bath.

In addition to borrowing ₹30,000 from his relatives in Kanpur, Ajay also availed of the Modi's government's Swachh Bharat Abhiyan to build the toilet in his house. He is still waiting for the government to transfer funds into his bank account.

"I received the initial ₹2,000 in July but ₹6,000 is still pending," he said. "I really don't know how we are going to afford this."

At this point in the conversation, Jaanvi reassured her husband that their children's health was worth any financial trouble they face. "I have realised we have to protect our children. I don't think anyone else will help us," she said.

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