Twenty-eight riders on Harley-Davidson motorbikes revved up their engines at the Durbar Hall ground at Kochi on a sunny September afternoon. All of them wore T-shirts with the legend, ‘A Ray Of Hope’ (AROH). Then Mollywood star Rima Kallungal swung a white flag. And the bikers moved off in a procession through the streets of the city.
AROH founder Bindu Nair wore a big smile. She had just opened her branch in Kochi. “I did so because there are so few centres in Kerala looking after children suffering from paediatric cancer,” says the Coimbatore-based Malayali (incidentally, AROH also stands for arohan, the Sanskrit word for the ascending note in music).
What AROH does is provide medicines, free monthly rations, food at hospitals where the children are being treated, as well as psychological counselling for parents. Amazingly, she has already received a lot of support in Kochi. Apart from ten volunteers, the Hotel and Restaurant Owners’ Association has agreed to provide free food at any hospital at Kochi. “They have promised to do it anywhere in Kerala,” says Bindu.
Parents need all the support they can muster, because the presence of cancer in their children has a devastating effect on them. “Their world comes crashing down,” says Bindu. “Very clearly, your life will never ever be the same again, whether the child survives or dies.”
Bindu says “the most common type of cancer is acute lymphoblastic leukaemia”. The good news is that with timely treatment, this cancer can be cured. In the US and the west, the cure rate is almost 95 per cent. But in India, it is only between 45 and 60 per cent. Since the majority of the patients belong to lower-middle-class families, they cannot afford the cost of the treatment, which could be anywhere between `10 lakh and `15 lakh. “Which middle-class family can afford that?” says Bindu. “Eventually, many children die.”
When that happens, the grief is unbearable for the parents. And they go through different stages of grief. “First, there is a fierce anger towards God,” says Bindu. “All the mothers will say immediately that they don’t want to live anymore. There is a feeling of not knowing what to do next. For years, their sole focus had been the child. All of a sudden, one morning, they don’t have anything to do.”
So AROH volunteers regularly visit them and provide bereavement counselling. “If need be, we call in psychologists too,” says Bindu. “Then over a period of a few years, there is an acceptance of the death. Slowly, because of the presence of other children, the parents are able to assert their will to move on.”
But the memories will remain forever. Even for Bindu who will always remember Arun Kumar, who came from a very poor background. His father, a goldsmith, abandoned the family and went off with another woman.
When his mother protested, in anger, the father poured kerosene, and burnt her, in front of Arun. “Arun was suffering from cancer at that time,” says Bindu. “Soon after, his father also abandoned him and his younger sister. They were left in the care of their grandmother.”
There was no justice for the mother. At the police station, because the father paid the cops off, the death was registered as a suicide. “But what stands out in my mind was that, despite all the tragedies, I have never met a more outgoing and positive-minded person like Arun,” says Bindu. “Every moment that we spent with Arun was a learning experience for all of us. He was such an intelligent and outgoing boy.”
Arun passed away at age 15. “Because of Arun, I have learnt to cherish every moment of every day, because you can die at any time,” says Bindu.