10 November, 2013

John, who they said should be put away and forgotten

John is middle-aged now, pushing 50. He has outlived every prognosis the doctors had for him.

Back 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.

Next 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.

John's 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.

They did 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.

01 July, 2012

John's people

John has never learned to read or write. His parents took him to a special school, when one was set up close enough to home to reach. And while he was okay with things like shapes and colours and describing pictures in a rudimentary way, he never learned to recognise letters and reproduce them. His brother sometimes wonders whether better schools, more knowledge of how to teach, something, would have helped, and maybe they—he included—just didn't try enough.

John has a great memory, though, often dredging up little details that his family never remembered until he brought them up. Sometimes it is difficult to figure out what he is referring to, partly because of his slurred speech and limited vocabulary, but also because of the way his mind files away associations. Since he can't always find the right word, or say it clearly if he does, his brother will ask him question after question, going around the problem word, free-associating, playing with related thoughts, until, suddenly, it all falls into place. His brother will say "aha!" and John will say, "that's what I said only!"

John remembers people well. Occasionally, it may seem otherwise, when he refers to X as "Y's wife" or B as "A's father." Until you realise that he will, in another conversation, refer to Y as "X's husband" or A as "B's daughter." His brother has concluded that he remembers people by linking them with others. His brother got that from reading about how peoples without written languages remember things. His brother thinks that was significant. His brother is a little slow sometimes.

28 June, 2012

John, who will never grow up

John was born almost forty-eight years ago.

But if you ask him how old he he is, he might say sixteen. (He did that for a long time. Perhaps it's because his birthday falls on a 16th.) With his brother, though, he has one answer: I a two-year-old child.

Which, in a way, will always be part-true. Because, you see, John will never grow up. Sure, he needs to be shaved, and he has body hair, and his voice did break at about the right time, and now, though the hair on his head shows no sign of receding—defying genetics and thumbing a nose at his balding kid brother—it has acquired a few sprinkles of gray, and his pale, sun-deprived skin is showing the beginning of a few tiny wrinkles. Sure. But he will always be a child, he will always need to be taken care of.

He hasn't, and probably never will, learned diplomacy, though he can fib if he wants to. He can't articulate all he feels, can't describe physical symptoms, not to his father, who has a hearing problem, or when she was there, his mother, who understood him best of all, or even to his brother, who understands him best now. He never learned to write, or to read. He likes 'looking at pictures,' but quickly tires of it. He doesn't mind TV, but lost interest after his mother died, because she was the one who would tell him what was happening. He loves conversation, and people who talk to him at his level of understanding (too many talk around him), but will settle for noise and bustle around him.

He understands affection, though, and has never learned to hide it.