To continue from where we left…
The second incident was a grave reminder of ignoring initial symptoms. The young man couldn’t keep it to himself anymore. Once back home from the Kashmir tour, he gathered strength to mention all of this to his family members. Needless to say all of them were baffled to hear something strange like this. Initial tests were conducted. The local doctors couldn’t identify the problem. Some thought it to be the regular far or near eye sightedness. Thus they suggested different kind of vision correction eyeglasses. Some suspected it to be lack of Vitamin A in the body, thus asked the young man to eat a lot of carrots. A helpless condition can bring out the worst in one’s psyche., one would want to go to any limits to get himself cured. Carrots were brought home daily and he ate a hell lot of them. But the matter couldn’t be undone.
In a span of two years, the condition started to deteriorate, very fast. At first reading the newspaper started becoming difficult, font sizes changed automatically, the letters would dance. Exactly there you are dyslexia: Ishaan Awasthi. Taarein Zameen Par. But No. Real life is more dangerous than reel. In Ishaan’s case, it was The problem; In this case, the dancing alphabets was the start of the problem that was to come.
In a few months, as a Bank Cashier, the man couldn’t differentiate the rupee notes. The Bank staff thought this to be a creative excuse for not working. In a lazy small town, idle minds do have a tendency to come up with such lame excuses. What was more annoying for the young man was that no one could be explained what the problem was, neither anyone had heard something like this ever before.
Day by day the frustration started taking a monstrous shape. Doctors, specialists, surgeons, saints were consulted. But neither science nor nature could avoid the inevitable. A renowned eye-surgeon in Ahmedabad took the young man’s elder brother aside and revealed the cause – a genetic disorder called RP – Retinitis Pigmentosa
A disease that in sometime will lead to complete blindness.
A disease whose cure in this technology-driven world is not yet found.
That was 1988.
Till this date, the cure is not found. Last heard, a man has regained his eyesight with the help of a bionic eye in London last year. More research has to be done on this aspect. But then we are in 1988 pre-liberalized India right now.
The surgeon, in his firm voice told the elder brother: “In most RP cases, the blackness starts from corners and spreads towards centre leading to a pinhole kind of an image, something like when we see through a tunnel - only the central part is seen, the rest is black. In scientific terms, they call it Macular Degeneration”.
During the early 90s, Cuba as a nation had developed some cure towards a few peculiar ‘eye & retina problems’. The elder brother had hardly heard about that tiny nation on the world map. Research on Cuba started. The first stop: the money to go there and the money on the surgery. The round of letters, requests, and permissions were kick started. Many funding agencies, charitable trusts, generous foundations and philanthropic men & women were contacted. Loans were taken. Some amount was borrowed. Meanwhile the young man started complaining of his night vision. It had started receding.
Time was now running out. A few months later, both the brothers went to Cuba for the surgery. In those days there were hardly any direct flights to Spain (one of the largest Spanish-speaking nations) forget Cuba. Thus Rome and Madrid were the en route stoppages to La Habana, Cuba. Its ironical, how the young man’s disorder took him to places he had never been to in his lifetime. He saw the beautiful streets of Rome and thought how different was it from the streets of Junagadh in Gujarat. Except that the later has a lot of cows and cow dung. At La Habana, in every taxi he went, he would come across this one song. It probably was played the highest number of times in every taxi there. Kaoma’s Lambada. When the brothers heard the song umpteenth time, they asked a taxi guy to lend them a cassette. The driver got them one.
The Cuba operation never worked. Science doesn’t have answer to every problem that nature can create. The surgeons in Cuba said, “We can’t repair the eye condition, but what we can do is, stop the eyesight from receding any further. So whatever vision that is lost till now, is lost but the young man wont lose it any further.”
Bull shit. The conclusion: Not just Americans, even Latin Americans can give you bull shit. They were certainly able to stop the vision from receding, but hardly for two to three months unlike their claim of halting it permanently. The young man knew the blindness was approaching.
Slowly the man, then in his mid 30s lost his eyesight and with it, the faith in god.
Needless to say horror, frustration, joblessness and fears of career, life, family & children seeped in. In cases like this of depleting vision what becomes blinded is human psyche. Even if he could see and drive his two-wheeler to office in daytime, the family members insisted him in not driving and almost blackmailed him in getting a permanent rickshawallah to ferry him to and fro from the bank. The rickshawallah religiously did his job. Remember his name: Salim. There is more about him. The Bank Manager could understand the critical condition; so the young man’s department was changed and thankfully was not asked to leave the job, unlike our melodramatic movies of the 80s. His wife had a job with the Income Tax department. His mother at her age of 68 took the responsibility of bringing up both the kids. Yeah, by now the young man was no more young, he fathered a second kid, this time a boy.
The routine life was now set. Face the situation. Prepare yourself for the impending disaster. Learn how the visually impaired tackle daily life problems. And the worst, wait for that day, when darkness would come.
You cannot blame a person for not thinking about committing euthanasia.
But as the clichéd idiom goes, where there is a will, there is a way. In the summer of 1992, amidst the tunnel of darkness, came the light in the form of...
To be continued...
p.s: just a visual sample of how someone with RP sees the world in the initial stages.
picture courtesy: http://www.lowvisionclub.com/images
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