By
Shevlin Sebastian
Photos: Bindu Nair. Pic by Albin Mathew; the late Arun Kumar
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 Kochi.
Founder
Bindu Nair, of the Coimbatore-based AROH 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 48-year-old Malayali (incidentally, AROH also
stands for Arohan, the Sanskrit world 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.”
Asked
about the most common type of cancer, Bindu says, “It is acute
lymphoblastic leukaemia.” The good news is that with timely
treatment this cancer can be cured. In the US and the west, it 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 Rs 10 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. “Firstly, there is a fierce
anger towards God,” says Bindu. “All the mothers will tell
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.
(Sunday
Magazine, The New Indian Express, South India and Delhi)
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