“I have listened to the faint cries of many mothers in hospital corridors late into the night. Those mothers, who were unable to even afford a day’s meal for their ailing child, let alone shell out lakhs for their cancer treatment,” Sheeba Ameer, a social worker based in Kerala’s Thrissur district tells The News Minute.
As the 56-year-old receves the Vanita Ratna award on Wednesday, instituted by the Social Justice Department of the government of Kerala, Sheeba shares the story of Solace, her 10-year-old organisation that provides financial and moral support to children suffering from life threatening diseases.
In 1998, Sheeba's daughter Nilufar was diagnosed with cancer. She was 13 years old then. Sixteen long years after battling the disease, Nilufar breathed her last in August, 2013.
But as she left, Nilufar had done the most inspiring act, that is to give her mother to all those ailing children in need of love and support.
"She was a fighter, she used to seldom be weighed down by the pressure. But when the pain gets acute, she would silently cry in pain, but she always came back to me with more power. Until one morning in 2013, when she did not wake up from her sleep. Nilu was a fighter, and she prepared me for a world without her. She is that brave kid who decided to share her mother with thousand other children in need," Sheeba says.
The beginning
In 1998, Sheeba relocated to Thrissur after spending 15 years in Qatar. Her daughter Nilufar and son Nikhil too, accompanied their mother, while her husband Ameer was to stay in Qatar for a few more years.
Soon after they shifted back to Kerala, Nilufar was diagnosed with cancer.
"She had only begun to go to her new school. This totally wrecked our family, the beautiful world in which we lived. I was an ordinary woman, a housewife who never had exposure to the problems of the world. And suddenly, there I was, having to be the pillar of strength for my family, for my daughter. I panicked, but I never let anyone know," Sheeba recalls.
Three years of treatment at Tata Memorial Hospital in Mumbai, and a bone marrow transplant later, Nilufar was back home in Kerala. However, she soon developed health complications and her hips collapsed, making it imperative for her to undergo a hip replacement surgery. She spent the next 5 years on a wheelchair.
"When we were at the hospital, I saw many families who could not afford to give the best possible treatment to their child. Thankfully, we were financially secure, which made it possible for us to give her the best treatment available. When Nilu started recovering faster than the other children, their mothers would come to me and ask what I did differently for my child. I have spent numerous nights with the mothers of those children in hospital corridors, telling them what kind of care they need to give their children. But the reality of financial constraints for these families prevented them from doing so," says Sheeba.
While on the hospital bed, Nilufar would often share her distress with her mother, on hearing of the sufferings of other families.
"She would tell me to go help those families, to give the same support I gave her then. 'I have you, but what about those children', she would ask me. She had the heart to share her mother with all those children in need," Sheeba says.
After getting back to Kerala in 2001, Sheeba began to volunteer at the Pain and Palliative Care unit based in Thrissur. By then, she had begun to consider her daughter's words and was contemplating setting up an organisation to support children with life threatening diseases.
"The seven year period I was associated with the Pain and Palliative Care pediatric unit was in a way my homework and preparation for setting up Solace. I used to spend a lot of time at the unit, giving care to the children and counselling their families. Moreover, it was a time for me to be independent. And I set up a tailoring unit in 2005, employing 5 destitute women," she says.
Two years later, Solace was set up. At the time, the organisation worked out of a single bench, put up on one corner of the tailoring unit. Ten years later in 2017, Solace has four centres across Kerala and financially assists as many as 1400 children. The organisation spends at least Rs 10 lakh every month to assist the treatment expenses of these children.
Personal struggle
"I was a woman who was terrified of public speaking. I was never used to holding a mic and addressing a gathering. Our work has given me the confidence to reach out to people in need. Even now, I am not fond of the mic, but I manage to communicate my inner feelings to the people," Sheeba explains.
For Sheeba, her personal struggle with her daughter's disease was exhausting. But she made it a point to always hide the troubles behind a reassuring smile.
"If I show my concerns on my face, Nilu would understand that she is not doing fine. And so, despite walking with a volcano in my heart, I smiled at my daughter, I told her everything will be fine. There is nothing a woman cannot tide over and our combined struggle has proved that," she says.
Sheeba understands that life threatening diseases like cancer do not only take a toll on the patient, but also on the emotional and financial well being of the other members in the family.
"The first step is to make them financially secure, social well being will soon follow. Emotional support is what the family members need and our 40 plus volunteers are dedicated in providing that," says Sheeba.
Future of Solace
Ten years and countless awards later, Sheeba wishes the organisation could become non-existent.
"There are people who are surprised when they see our work, they ask how I can work selflessly. I believe it all depends on how you define yourself. I see myself as part of the society and each one of us have a role to play in bettering it. If all of us are compassionate, then there will not be a need for an organisation like Solace to help the families tide over the tough period. That is what I want the future of Solace to be," Sheeba says.
As she stares at the photograph of Nilufar on the wall of her living room, Sheeba remembers her daughter's last words.
"I love you Umma, she told me. She must have at least repeated it twenty times and said that I would save her. I left the room after she fell asleep. She never woke up the next morning," Sheeba says, battling to keep her emotions at bay.
"But now, Solace is my child."
(All photographs from Sheeba Ameer's Facebook page)