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What does it feel like losing your sight little by little?

 

It’s more like sinking below the earth on the edge of the twilight zone.

 

Sometimes, the sights, the colors and the precise size of the objects look so wonderfully clear. And in the next minute, a hazy mist settles over the picture like powdery snow and everything begins to go out of focus.

 

There’re sudden and scary flashes as if someone had fixed a photo flash inside your eyes. And you blink, thinking that you’d see clearly, because blinking hard had worked in the past. But no. It doesn’t work any more. You come to a sudden and painful realization that your eyesight has been reduced to that misty haze where you see shadowy figures silhouetted against the expanse of a white canvass.

 

That’s how it feels for someone going through gradual vision loss. IT happened to me at my 17th year, and, believe me, I still wake up in the middle of the night, sweat trickling down my forehead, whenever my mind takes me back by twenty five years.

 

I wanted to exorcise the ghosts of that trauma, the pain and the helpless feeling, and so I wrote a book detailing everything I and my family had to face. All it did was to scrape open the old wounds and keep it raw. But I feel reliving the nightmare was worthwhile because the book helped fellow patients of Retinitis Pigmentosa and gradual vision loss to identify with the story and talk about it more openly.

 

The one question that keeps coming back over and over again is: how do I handle gradual vision loss? My book tells my fellow patients the story of what happened to me, but sadly, it’s not an instructional manual or an academic booklet to provide readymade solutions. It’s one way they could purge their own traumas and feel strong enough to workout their solutions.

 

But as someone who had walked through the fire and emerged stronger, I feel it’s important that I address the question personally with a few things I had done and things that worked for me. This is specifically for those going through gradual vision loss and how they handle their situation. I hope this is useful.

 

  1. Verbalize what you feel.

 

The most obvious challenge for someone who is going through vision loss suddenly and significantly is that people around them almost cannot understand the extent of their impairment.

 

People with Retinitis Pigmentosa or other retinal conditions can have vision loss in a matter of months or even weeks. No way would their parents, siblings or other close family would realize that something they could see so clearly just a week before is completely invisible to them now.

 

A friend of mine who studied science subjects at school had difficulties observing the plant cells on a microscope. Obviously he did that effortlessly a few weeks before and is now struggling to even fix his eye over the eyepiece.

 

He couldn’t open up to his teachers since he wasn’t sure whether they’d believe him, while he couldn’t carry on with the charade of doing his lab work any more. His inability to clear the school exam was blamed on his mental weakness. It took several years for his family and teachers to realize he was going blind.

 

So, it’s important you verbalize your condition to your family, friends and even neighbors of your colony, and the puzzled bus conductor, who like to know why you didn’t reciprocate their smile or a friendly wave or why you went dangerously close to falling over the sidewalk.

 

Some of you may be saying this’s easier said than done, but think of it. People who’re used to seeing you as a normal human being will have no clue as to how serious your problem is. Doctors can medically confirm your blindness, but for those who haven’t come across gradual vision loss, it wouldn’t strike unless you show the obvious signs of blindness.

 

(To be continued)

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