Learning lessons from an un-amputated spirit

“ Teen aani don kitti ? [How much is three plus two?],” asks Pratibha Hilim. Sitting before her on the ground is a group of around 10 kids, ages ranging from 7 to 9. They don’t respond. She writes on a chalkboard, looks back at the children and signals to them with her arms and a tilt of her head to repeat, “ Panch [five].”

Pratibha is standing with the support of leather-and-steel stump protectors with rubber soles, which are attached to both her knees. A piece of white chalk is strapped near her elbow.

‘School’ is in process, and it’s in the Hilim family’s three-room cement house in Karhe village of Palghar district. Here, since July 20 this year, Pratibha has been teaching English, History, Marathi and Maths to around 30 Adivasi children of this village in Vikramgad taluka of Maharashtra’s Palghar district. The kids come in batches from 10 a.m. to 1 p.m., carrying textbooks provided by the two zilla parishad schools in this village of 1,378 people.

“Since the operation, every small task takes longer to complete. Even writing with this is difficult,” says Pratibha, while a student helps fix a chalk on her upper arm using a velcro strap.

Until last year, Pratiba Hilim, who belongs to the Warli Adivasi community, had been teaching for 28 years in local zilla parishad (ZP) schools. After getting married at the age of 20, she shifted to Bhiwandi city, around 100 kilometres from Karhe, where her husband worked – Pandurang Hilim, 50, is now a senior clerk in a state irrigation office. When he was transferred to Kalwa town in nearby Thane district in 2015, she commuted from there to Bhiwandi to continue teaching.

In June 2019, soon after she had started working in a new ZP school in Bhiwandi, she visited – as she usually did once a month – the Hilim family home in Karhe. That’s when her troubles started. That month, 50-year-old Pratibha was diagnosed with gangrene, a condition that occurs when body tissues die. This is usually a result of a loss of blood supply due to an underlying illness, injury or infection.

Soon after, both her arms below the elbows, and both her legs below the knees, had to be amputated.

“I never imagined this would happen to me. I was here [in Karhe] when I suddenly got a high fever,” Pratibha says. It was around 8 p.m. on June 16, 2019. “I took paracetamol thinking it will get better. But the next morning I started feeling very sick, so my son and husband took me to a hospital. I have no recollection of this. I had lost consciousness for a whole day.”

In the morning of June 17, she was taken to a private rural hospital in Kalwa, around 120 kilometres away, in her family’s car. “The doctors there told my husband my condition is critical and that I should immediately be shifted to a private hospital in Thane,” says Pratibha. That same day, her family moved her there in an ambulance.

“When I woke up finally, I realised I am in a hospital. The doctor told me I had caught dengue fever. He asked me if something happened while working in the fields. But nothing had happened. We always do farm work on weekends when we come to meet baba . He is old, so we help out and plant paddy on our plot.” Pandurang’s father owns four acres in Karhe village where the family cultivates paddy, millets, tur and urad . “However, due to irregular rains we had stopped working much in the field,” Pratibha adds.

On June 19, while in the private hospital in Thane, she noticed her hands and legs had started to turn black. “When doctors said I could have got bitten by some insect on the field. I did not believe them. But the fever kept rising and my body was feeling worse. I also started having this burning feeling in both my legs and my this [right] hand. At first, they [doctors] said I will be fine, but then the next night my hands and legs went ice cold. I kept shouting. After that, I kept shouting for 19 days. My legs were burning and paining more than my arms.”

Three days later, Pratibha was diagnosed with gangrene. “At first, even the doctors couldn’t figure out how this happened. They did many tests. My fever wasn’t going down and I was in so much pain. I kept screaming from the burning sensation in my legs. A week later they said now it will get better because three fingers of my left hand were still moving. My husband was in complete shock. He didn’t know what to do. My son took charge of everything.”

Their 27-year-old son Sumeet, a civil engineer, unable to get extended leave from work, left his job with a construction company in Mumbai after his mother’s hospitalisation. “He took all the decisions regarding my operation. He signed all the papers. He would feed me, bathe me, my son did everything,” recalls Pratibha.

By the end of June last year, doctors at the hospital in Thane had to amputate her right arm. “That operation didn’t go well. They cut her right arm very badly,” says Sumeet, pointing to the scars. “They charged us 3.5 lakhs to operate on one hand and didn’t even do it right. She used to cry in pain a lot. My father said we couldn’t afford this hospital anymore.”

The ZP school in Bhiwandi gave Pratibha three months’ salary in August to cover some of the expenses – her in-hand income was around Rs. 40,000 a month. “We lost so much money in that [Thane] hospital. They charged nearly 13 lakhs for around 20 days. My brother loaned us some money and my friends from school also helped us. We were left with nothing. My husband also took a loan,” Pratibha says.

Around July 12, having spent well above what they could afford, Pratibha’s family brought her to the government-run JJ Hospital in south Mumbai, where she remained for nearly a month.  “After coming to JJ my legs were still hurting. If anybody touched my leg I would shout,” she recalls. “I couldn’t eat anything for nine days. I couldn’t sleep and my legs were burning so much. The doctors kept me under observation for 2-3 days and then decided to operate.”

With that five-hour operation on July 15, her three remaining limbs – the left arm and both legs – were also amputated.

“When the doctors first told me about the operation I went into shock,” Pratibha says. “I started thinking about my future and that I will not be able to go to school anymore to teach. I would have to just stay at home and become completely dependent. I started crying thinking I won’t be able to cook anymore. But my relatives and friends would visit me every day. They gave me a lot of courage. Even the doctors told me that with prosthetic limbs I will be able to go back to school and do everything like before. They made it easier for me. I was very scared but my parents also gave me courage and helped me after my operation. I owe them a lot.”

After her discharge from JJ hospital on August 11, 2019, Pratibha went to live with her mother, Sunita Wagh, 65, a farmer and homemaker. Pratibha’s parents own six acres of land in Chalatwad village in Jawhar taluka of Palghar district, and grow rice, jowar , tur and millets. Her 75-year-old father, Arvind Wagh, still works in the field along with a few agricultural labourers. Pratibha stayed in Chalatwad till March 2020, until her family moved back to Karhe village due to the lockdown. (In September this year, her husband moved back to Karhe to be able to remain in the village, and goes by motorbike to work at the irrigation office in Jawhar taluka ).

Over the last year, Pratibha has had to visit JJ Hospital 3-4 times with her son for follow-up check-ups and tests. In February 2020, she started pre-prosthetic physiotherapy at the  All India Institute of Physical Medicine and Rehabilitation at Haji Ali in south Mumbai, run by the Ministry of Health and Family Welfare. The doctors there had asked her to wait until her right arm healed well. The centre is around 160 kilometres from Chalatwad, and her son Sumeet would drive her there every alternate day; the journey took four hours one way. “They had told us to come back for therapy after all my injuries were healed. But my right arm would hurt almost every day [for months],” Pratibha recalls. “My daughter Madhuri took care of all the housework and even now she feeds me with her hands. I try to eat using the strap, but the spoon falls off.”

Pratibha’s youngest daughter, 25-year-old Madhuri, is studying Ayurvedic medicine at a university in Sawantwadi taluka . During Pratibha’s operation in JJ Hospital in July 2019, her exams were on and she was unable to be by her mother’s side. “But bhagwan [god] gave my mother a second chance in life for us,” she says. “I will now do everything to help her fight this. Some days she cries a lot about her hands and legs being taken away from her. In the past, she has done so much for us – now it’s our turn. We tell her we are there for you. We children will become your arms and legs.” Pratibha’s eldest daughter, Pranali Darothe, 29, works as an assistant agricultural officer in the district agriculture office and has a one-year-old son.

Pratibha and her family are now eagerly waiting for her prosthetic limbs from the Haji Ali centre – from where she got the stump protectors too. “I was going to get my hands and legs [prosthetics] back in March. They were already made according to my size and kept there,” she says. “But the doctor messaged us saying to come back in a few months [due to the lockdown]. Whenever the centre reopens, I will get my training again and then they will attach both my arms and legs.”

Since January, Pratibha has been walking using knee pads attached to both her legs. “The centre gave this because it will make it easier for me to walk [with the prosthetic limbs] and will also help with my balance. Initially, it used to hurt a lot. It took me one month to get used to walking with these,” she says. The rehab centre also helped her re-learn how to sit, stand and make other basic movements using prosthetics, and taught her yoga and other exercises to strengthen the muscles. At the centre she was also taught to lift things like a spoon, pen or chalk with her arms using velcro straps.

After the amputations last year, Pratibha’s work as a teacher in the ZP school came to a standstill. And then came the Covid-19 lockdown in March. She realised that children from the village were struggling to study during the lockdown. She would see them wandering around or working in the fields. “These are poor people. They don’t understand online education,” she says. “Their parents are really poor. How will they get a phone for online education?”

So Pratibha decided to teach the kids free of cost. “The situation of Adivasi children is very bad here. They barely have two meals to eat. Sometimes my daughter cooks for the children who come hungry. We usually give them bananas, but on special days we distribute farsan and chocolates.”

But, she adds, “Many [children] also stopped coming [to the classes at her house] due to the harvest season. Their parents take them to the farms. Or kids have to stay back at home to take care of their younger brothers and sisters. If I had my legs I would have gone to every single house in this village and made the parents send their children to me.”

In August 2020, Pratibha applied for a transfer from the ZP school in Bhiwandi to Karhe village – she still has the job, and has been on unpaid leave after receiving three months’ salary till August 2019. “Until the schools reopen, I’ll continue to teach children at my house,” she says. The prosthetic limbs, she is sure, will help her resume work.

“I want to stand on my own feet. I want to go back to school and teach. I want to do my own work,” she says. “School has always been my whole world. Being with kids also helps me feel like I am normal again,” adds Pratibha, as she spontaneously tries to get up from the sofa to see me off at the front door. But her knee pads are not attached, and she loses her balance and almost falls. She manages to regain her balance, looking visibly upset. “Next time when you come have food with us,” she says, shifting back in the sofa and waving goodbye.

This story is part of a series of 25 articles on livelihoods under lockdown, supported by the Business and Community Foundation.