Monday, October 01, 2018

A Balm To Ease The Pain

Social worker Sheeba Ameer runs 'Solace', an organisation which looks after children who suffer from life-threatening diseases like Nephrotic Syndrome, cancer, thalassemia and sickle cell anaemia 

Photo by Melton Antony

By Shevlin Sebastian

It was midnight. Sheeba Ameer was sleeping soundly. But soon, at the edge of her consciousness, she heard a rasping sound. When she awoke, she saw that Navneet, who was lying on the next bed, was gasping for breath. “Amma, I cannot breathe,” he managed to say. Immediately, Sheeba went out of the room, at the Pain and Palliative Care Centre, at Thrissur, and called for a nurse. The latter brought a nebuliser and placed the mask over Navneet's mouth. Slowly, Navneet's breathing settled down to an even rhythm. 

Sheeba held the hands of the 16-year-old, who lost his mother when he was a child. She could not help but feel sad. 

A couple of days ago, in mid-September, the doctor had told Sheeba that the bone cancer had metastasised. The prognosis was grim. Navneet had a few weeks to live. But he did not know that. 

I was thinking, 'Things are going to deteriorate even further, just like the way it happened to my daughter',” says Sheeba. Her daughter Niloufa, who was 28, died on August 27, 2013, after a 16-year-battle with acute myeloid leukaemia. And Sheeba remembered that near the end, Niloufa said, 'Amma, will I survive or die? Please save me. I want to live'. 

It was a searing experience for her. When she initially took her daughter to the Tata Memorial Centre in Mumbai, to get a bone marrow transplant, she was stunned to see that the entire 11th floor consisted of children who were suffering from cancer. “I saw children who had their legs amputated, and some who had cancer in the eye, and many who were in the terminal stages,” says Sheeba. “Nobody knew whether their children would live to see the next day.” 

There were so many poor parents. “I saw them rushing off to somehow find money for the treatment,” says Sheeba. “I could sense how alone they felt. Where to turn for help? Who would help?”

Sheeba resolved then and there that she would start an organisation to help poor parents. And although it took time, she did so, on November 8, 2007. “We look after the children suffering from cancer and other life-threatening diseases like kidney failure, thalassemia, sickle cell anaemia, cerebral palsy, juvenile arthritis, seizures and mental retardation,” says Sheeba. 

Meanwhile, thanks to 'Solace', she was able to give hands-on help for Navneet.
'Solace' has provided a monthly kit of food rations for the family, paid for the costly drugs, and providing clothes. Around 1850 children are looked after every month. However, the fatality rate is 50 per cent. 

When a child gets a life-threatening disease, not surprisingly, many parents get angry with God. “They ask Him, 'What wrong have we done? Why are you punishing us?'” says Sheeba, who won the Abhijith Foundation Award for Best Social Worker in Kerala in July at Thiruvananthapuram. 

Sheeba tells the women that they have become the mothers of sick children because God felt that they have the large-heartedness, the endless patience and dedication that is needed to look after them. “Many accept what we say,” she says. 

But not all. Kavya (name changed), a 28-year-old mother found it so exhausting to look after her sick five-year-old child. One day, she jumped into a pond at Thrissur with the baby in order to commit suicide. But while the child drowned, Kavya was saved by a bystander. Recently, the district court has convicted her of murdering her child. “Kavya is feeling very guilty because she acted on the spur of the moment,” says Sheeba. “The case is now in the Kerala High Court. We have hired a lawyer to defend her.” 

Surprisingly, the number of fathers who abandon the family when they come to know that one of the children has this fatal disease, is as high as 40 per cent. So, the mothers have to battle it out alone. “Suddenly, there is no money in the house, because the mothers cannot leave the children alone,” says Sheeba. “So, 'Solace' pays the rent, so that the landlord does not harass them. The monthly medicines can cost anywhere from Rs 8000 to Rs 20,000.”

On top of all this, siblings don't take kindly to so much attention and money being showered on the afflicted child. “Many get violent, or throw tantrums,” says Sheeba. “They feel neglected, so they have to be taken to counselling.”

Today, 'Solace' has centres at Kochi, Kozhikode, Malappuram, Thrissur, and Palakkad. “We depend a lot on volunteers, many of whom are retired people,” says Sheeba.

As for the funding, Sheeba says, “We are helped by good-hearted people in India, the Gulf (West Asia), UK and the USA,” she says. This includes her husband Ameer Ali, a marine biologist with the National Museum in Qatar as well as her 30-year-old son Nikhil who also works in the same country.
But the job has taken a toll on her family life. She spends five months in Kerala before she goes and spends one month with the family. “But they have accepted this as my life's work,” she says.

Asked whether she has got over the loss of Niloufa, Sheeba says, “I don't think I have been healed. But I have accepted what happened to my daughter as the will of God. I have realised that death is the only truth. I am a big fan of Rumi [13th century Persian poet], who said, 'You must learn to carry your sorrows the way you carry your happiness'.” 

(A shorter version was published in Sunday Magazine, The New Indian Express, South India and Delhi)

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