John is middle-aged now, pushing 50. He has outlived every prognosis the doctors had for him.
when he was little, his parents planned to migrate to Canada. At that
time, the only hospital in the world that operated on children with his particular heart disease was in that country. But then, for
complicated family reasons, that plan fell through. His mother never quite forgave the family member who had caused the plan to be dropped.
option: Vellore in Tamil Nadu. They went there to meet a famous doctor.
Unfortunately, that doctor was travelling when they went. And they saw
his deputy. The deputy refused to consider John for surgery. He's a
vegetable, he told john's parents, put this child in an institution and
forget about him; you have another child, and you can have more.
parents were horrified. They knew him. He was a bright-eyed, loving
child who just didn't know how to walk or talk clearly. But he did talk,
he did hug, he laughed, and he cried. They left, and they decided they
would never put him away and forgot about him.
the best they could. The occasional family friend babysitting the two
little boys so they could go to a movie or something like that. Holidays
were only to visit relatives (except for one, just before his dad
retired, when, thanks to a sulky younger brother whining about them
never having been on a real holiday, they went to a hill station in the
South), entertainment was the radio (and later TV) and visiting friends.
As John grew, the length of the trips were curtailed, because the
family couldn't afford a car or taxis over long distances, and John and
his wheelchair were not easy to lug into busses. leave alone the
nightmare of the city's commuter trains. When his brother grew older,
the parents would sometimes leave the boys together, and his kid
brother, who fancied himself an actor who would one day star in movies,
made up and performed plays for him. Often, his parents chose which one
of them could go to an event, while the other stayed home.A school for
special children opened nearby, and for a year or two, his mother would
lift him into his chair and wheel him to it. But then the family moved
further away, and that ended. When his younger brother grew older, and
struck out to do his own thing more often, that meant his parents had
more limitations in where they could go. Briefly, his mother started,
and taught in, a nursery school, the job she had before he was born. But
this was a staff colony, and when other women saw what a success the
school was, his mother was asked to hand it over to a very senior
official's wife. Then his father retired, and they moved again, across
the creek, and to a succession of houses. At first, they managed first
floor places, because his father was strong enough still to carry him up
a flight of stairs (he had done six flights in earlier years), and his
brother, though never as fit and strong as his father in his prime,
could carry him as well. But as his father grew older, they had to move
to a ground floor place. And later, hire an attendant, because now his
brother had been ill and was no longer allowed to lift heavy weights.
Somewhere around this time, a doctor told his family, this boy has lived
this long because he had a family; he would have lived into his teens,
maybe, if he had been institutionalised, but not much longer.
And his brother remembered that doctor in Vellore and hoped he was rotting in some hell.