Saturday, December 17, 2011

No man's land

I am neither in an able world nor completely in a disable world. Like the characters in Sartre's Huis Clos who assumed hell to be representative of physical pain and torture, I also assumed years ago that the world would eclipse on me at the later stages of Stargardt's.

I can still read books (digital formats with magnification if not paper). I can recognize people by their countenance if not by their faces. I can do almost everything as normal people but I do it differently..

But I didnt know 10 years ago that I will be okay. I always thought of extremes. To learn braille, to find a job where I have to speak more and read less (interpretation), to adapt for some dark world, without colours.Lack of awareness about the diseasae, about adaptation, about LVAs.  

In India, doctors didn't help me. No teachers suggested about extended testing times. I lived with low self-esteem as my performance in exams started to get affected as soon as 9th grade. I didn't understand why I could not complete a paper or why my score in mathematics started to dwindle when I was positive I had made no mistakes. I didn't know then that Iwas "misreading" digits...

I was trying to assimilate my world with the point of view of a sighted person. And that was the big mistake.

If you or someone in your family has just been diagnosed with Stargardt's. Don't panic.  First step, find out what you are dealing with. With technological progress, everything is possible today. Find out which visual aids you can use. Try to meet or connect with people with SD who can help you with adaptation tricks that they learnt over time from experience. Make a list of do's and don'ts with the help of your vision counsellor. Living with Stargardt's is like living the same world differently. Everything is possible but the rules of sighted world do not apply. So, second step is to unlearn to see things from a sighted person's perspective. We panic because we have always been taught to understad sighted world as normal world and everything else is an anomaly. You need to unlearn this and start to learn the tricks and ways of being in a different world. Everything is still possible in that world but different.

I'm legally blind. And I have a normal job where I perform better than my "normal" colleagues. And soon when I am ready I will complete my Ph.D in French Literature. There are no real limitations in any of the day-to-day activities. Only limitation sometimes is unawareness.

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