Back to the future

Despite odds, leprosy patients prove there is life beyond the disease. As Leprosy Day nears, gritty survivors talk about the return of happiness.

Updated - October 18, 2016 02:22 pm IST

Published - January 03, 2016 08:38 am IST

Holding the pen between his stubbed right thumb and index finger, 15-year-old Yogesh Malkari writes his name on the page in a curvy, legible hand in Devanagari script. Marathi was his favourite subject at school. However, his schooling came to an abrupt halt two years ago, when he was diagnosed with leprosy. Since then, physiotherapy and mild electric shocks became part of his daily regimen. The plaster on his left hand is changed every alternate day.

“I am used to the electric shocks now,” he says with a grin. There was another rude shock in store for him when his father passed away last Diwali. “I had gone home for the festival. After father’s demise, my mother’s visits became less frequent. My brothers come to meet me sometimes. They ask me when I would return home,” he says.

Despite the adversities, Yogesh has a reason to be excited about. After two years of treatment at the Vimala Dermatological Centre in Andheri, June will see him resume school in Boisar, reunite with his siblings and friends and reclaim his old life.

While he can’t forget those early, confusing days when the first signs of leprosy began to manifest – a tingling sensation in his hands which soon lost all sensation – he is looking forward to living life on his terms again. “Now, I can write easily. At the Centre, we pass time playing ludo and carrom. I am able to hold the striker and flick it too,” he says.

Fear and loathing

Leprosy, a disease mostly prevalent in Asia and Africa, has long been looked upon with disgust and fear due to the physical degeneration and deformities. “The number of cases has come down, but leprosy of the mind is still there. It is a visible disease. India has the highest number of leprosy patients followed by Brazil. Acceptability of leprosy patients should improve. The disease is non-contagious, non-hereditary and completely curable,” says Narayan Iyer, CEO and national coordinator at NGO Indian Development Foundation. The Vimala Centre is one of its projects.

The centre mostly admits patients at an acute stage of deformity or ulceration, entailing in-house treatment of up to six months or longer. Several patients treated here over the years are leading fulfilling lives despite all odds, but societal stigma clings on.

Misconceptions about the disease are rife, points out Mr Iyer. “In certain parts of the country, when patients die and are buried, their bodies are exhumed and left out in the open as the disease regarded as evil. That’s the level of superstition.”

Sandeep Gupta (name changed), 52, still lives with it, nearly 40 years after being cured. While his day job provides for his wife and 12-year-old daughter, he recalls how he fled to another metro in the 1970s to protect his Mumbai-based joint family from the humiliation they would face on his account.

“There is a saying that goes: chand me daag hona chahiye, khandaan me daag nahi hona chahiye (the moon can have dark spots, but the family cannot be blemished),” Mr Gupta says.

“Before leprosy, I had small pox, so my leprotic condition was not visible. Although some relatives knew about it, they kept it confidential and were supportive. However, they were happy when I left for the family’s sake. Though I have returned to Mumbai, I don’t stay with my brothers. You can care for your family from afar. Those who love their families, leave,” he adds. While working among others like him in Mumbai’s slums, he found his uncle, aunt, mother and sister among them.

He says there are many, even those from educated and well-to-do families, who have left home. The revulsion and discrimination by people leave deep scars, he adds. “People will walk at a distance. Sometimes, as I have experienced myself, people on the bus will get up if you sit next to them. Awareness programmes have made a big difference in changing antiquated attitudes, but our society has a long way to go. If people don’t treat us like human beings, they should at least not repudiate us and react as if they have seen a devil. This hurts the most. This is against humanity. Transgenders, leprosy patients and widows are neglected. The society only knows to break their hearts,” Mr Gupta says.

The local hero Beyond the grey-blue compound walls of Vimala Centre, few would know that Ganpat Vaidya, 72, who totters on his walker with clawed hands and legs bearing marks of acute ulcers, is known as a ‘hero’ for his fastidiousness about personal hygiene. He dismisses the sobriquet as “bhankas (nonsense)”, but his printed blue shirt and clean white trousers spell a certain lifestyle.

“I wash my clothes,” he says, adding he dislikes any attempt to help him with the MCR (Micro Cellular Rubber) footwear. He can hold a chapati, but needs a spoon for rice. Movement is slow and difficult and he needs to be helped to bed. Memories of earlier life elude Mr Vaidya, and poor eyesight ensures can hardly make sense of the present. “The whole day, I just sit around. I cannot go out,” he says.

Ironically, his hands were once the most exercised part of his body. Mr Vaidya was an artisan, who crafted gold jewellery at a shop owned by his cousin. While working the metal, he realised at one point that he couldn’t feel the occasional burns. When he applied a hot onion to a boil on the sole of his foot, he felt nothing. His legs began to swell and then his fingers, but again, there was no sensation.

At the centre, Mr Vaidya makes brooms and sometimes does a bit of sweeping. After his brother died, he has no immediate family, and his nephews never visit. “No one comes. If it was not for Sister, I don’t know where I would be,” he says, unable to hold back tears.

A life less ordinary Sister Bertilla Capra, a 77-year-old Italian nun from the Missionary Sisters of the Immaculate is the driving force at the centre. For the last 45 years, she has made India her home, treating and caring for leprosy patients.

A nurse by profession, she has also trained as a mid-wife. Sister Bertilla came to Andhra Pradesh in 1972 after undergoing a 40-day special training for leprosy care in Spain. After working in the southern State for nearly a decade, she came to Mumbai in 1981 and has stayed in the city since then.

She thinks Indian leprosy patients have a spiritual approach to the disease, which helps them cope better with it. “They are willing to accept their situation as they think it is part of their spiritual culture. They are ready to tolerate it as an act of god. They don’t show their suffering or lament about their condition. They edify you for the help,” she says.

In a blow to leprosy patients under her care, the Indian government has recently decided to not extend her visa, citing a change in rules. She is currently on a provisional visa that expires on February 4. The Union government has conveyed their decision through two letters, the latest on December 23.

“It is a blow I never expected. No reason was given for the decision. If I were young I would have said ‘bye bye’. But I am 77. The people here have become a part of my life. It would be difficult for me to be separated from the people here,” she says.

The sense of hurt at this sudden turn of events is palpable. “The service I do here gives me happiness. I have spent my life with the patients here. I am happy to live with them. This satisfaction is not easy to remove from my life and my heart,” Sister Bertilla says.

Sister Bertilla was granted a residential visa from 1970 to 1990, and then five-year multiple-entry visas for the next two decades till 2010. Then, the rules changed again and she had to extend her visa every year. She has just returned from a trip to Delhi, where she sought help from heads of Catholic bodies and government officials.

Unravelled ties The mention of Sister Bertilla is enough to evoke emotional reactions from patients at the Centre. “She cared for me much more than my family ever did. I had nowhere to go, so she kept me here. In this place, they do not snub you,” says Kalavati Mhatre, as tears well up in her eyes. After spending 35 years here, this sprightly 60-year-old is perhaps one of centre’s oldest residents, and her energy is contagious as she smiles and hugs everyone who comes to meet her.

She prominently wears all the signs of a Maharashtrian Hindu married woman – green and gold bangles on both wrists, a mangalsutra and red tikli (dot) – but there has been no sign of her husband or her two daughters and son, or her grandchildren.

“Since my children were little when I got this disease, they were never brought to the centre. My husband visited a couple of times and then stopped coming. A relative who used to visit passed away recently. No one has come to see me in all these years. The only memory I have of my children is from when they were little. I don’t know how they look now,” she says.

Before leprosy took over her life, Ms Mhatre worked the fields in her hometown of Uran. Those days are a distant memory now, and she has learnt to take her family’s apathy in her stride and move on.

“Earlier, I would miss them and cry a lot, but Sister told me to forget my children. She said I had other children to take care of, the ones who were admitted here. I have never thought of going back to Uran. If my family does not ask after me, why should I bother? This centre is my family. Sister Tessy is my mother as well as my daughter,” she says, pointing to a nun who has just walked into the room.

Apart from clawed fingers, Ms Mhatre has developed the foot drop syndrome – a muscular weakness or paralysis which makes it difficult to lift the front part of the foot and toes. Her mutilated feet are swaddled in bandages, which have to be changed every alternate day after applying ointment. This effectively rules out walking.

Creating family A deep sense of desolation engulfs elderly patients, for whom turning back the clock to a time with family and friends is difficult. For the younger ones, like Sona Sharma, rehabilitation in society is easy and less traumatic.

Distanced from her family in Andhra Pradesh, Ms Sharma created one of her own. The 30-year-old is a proud mother of a seven-month-old baby and lives in a room on Madh Island with her husband Rajkumar, a leprosy survivor who works as a security guard at the centre.

In 2010, after she had spent five years at the Centre, Sister Bertilla asked Ms Sharma if she would like to marry Rajkumar. The wedding took place at a Ram temple in Versova, and Sister Bertilla arranged for a room for the young couple to help them begin their married life.

“Everything has turned out well only because of her blessings. Otherwise,where would I be?” she says. Each morning, she leaves her baby in her sister’s care, takes an auto and then a ferry to reach the centre by 8 am, where she works fulltime as a cleaner. On occasion, her hands attract odd glances. “They look at my hands, but never say anything,” she adds.

Together, the couple make Rs 15,000 a month. With regular physiotherapy, Ms Sharma can hold and lift most things, but not small objects like a needle. Earlier, she would ask her family members to visit her. “When they did not come, I stopped calling them,” she says. Though she never went to school, she vows to give a different life to her son. “We will educate our boy. We won’t let him be like us,” she says.

A new beginning It’s Friday – a day for skin OPD at Vimala Centre. Long queues stretch in front of the office and clinic. Some patients will be given medicines and sent home, while some may have to be admitted if diagnosed with acute leprosy.

“When we started in 1980, India had 40 lakh cases. Due to the countrywide awareness programmes by the government, reporting of cases went up,” says Mr Iyer.

According to data with the government-run National Leprosy Eradication Programme, 1,25,785 new cases were detected in India in 2014-2015. In Maharashtra, 16,415 new cases were detected in the same year.

Christmas and New Year decorations from celebrations a few days ago are still intact, and long strips of crepe paper run through the trees in the compound, while the stars and baubles remind you of the festive cheer that had enveloped this place. After all, deformed bodies need not extend to the spirit.

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