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Gradual loss of sight and way of life: Rod Dystrophy
When I started going to school, my teachers noticed I could not see the blackboard. As I was growing up, the only two symptoms were spectacles for myopia and not being able to see in the night where there was no lamp or lighting. Loss of peripheral vision was also there perhaps, but it was so gradual year on year that I hardly noticed it till I was 30. However, due to my active and athletic spirit, I would fall down and hurt myself and wonder why did I even fall down in the first place. I would miss the ball in games until it entered the field of my vision. I eventually gave up sports when I began losing games or hurting myself or becoming a laughing stock among the spectators who probably better understood why I was missing the ball.
By some sudden stroke of luck or the grace of God, I picked up in studies by the time I was 12 and had something to show for myself as an excuse for my absence from many a late evening gathering of my classmates. I went out for higher studies and my father ensured that I got admission in a fully residential college, and later I went to University of Hyderabad, a Central University, which was the best place to be for me.
I developed loss of central vision in my left eye during graduation and other symptoms like inability to read printed material started showing up from the age of 30. After 30, the progressive loss of vision was noticeable year after year. I could not see print, then I could not see with a magnifier, then I started using high contrast colors on PC and phone, then I could not see them either and I started using voiceover. Meanwhile, I also developed sensitivity to sunlight. My eyes are no longer able to tolerate the brightness of the sun easily, and they don’t get adjusted to brightly lit places easily anymore.
I am now legally blind and need assistance to get around in unknown places. I am still coming to terms with the loss of my sight. I wake up thanking God that I still have some blurred vision left. I feel confident or at least pretend to the world that I feel confident today thinking that, when I have lost so much of my sight already that I have stopped regretting.
Losing sight gradually is very traumatic. There is the constant feeling that I am losing out on sight and losing out on life. I sometimes wish I was born blind so at least I could have equipped myself to face this world properly right from my childhood. But I must say, as it turned out, I retained functional eyesight till my education was done, I got married to a nice person, and landed up with a decent job to lead my life with reasonable dignity.
A word about my interaction with the people around me. I grew up more or less like a recluse who would have just a few good friends with whom I connected. I was never really taunted for not greeting them when we crossed one other, but at workplace, many would come and tell me in the beginning that I never responded to them at all at times. Gradually, everyone in office came to know that I have special needs and they got used to my ways. Out in the streets and in the open, I met some who got so annoyed with me that they said rude things to me on my face, like I was supposed to stay at home and rot if I was blind and not get out on to the street. There were others who would lend me a helping hand sometimes when I needed. I used to say to myself that God had to make all kinds of people, and so, some are definitely more beautiful than the others.
Today, I function more out of memory than sight. My dear ones would try their best to leave things in their place, so that I can easily find them. In office, my colleagues greet me on their own and do not place things in my way on the ground so I don’t stumble. They also alert me if the door is closed or if there is someone standing in my way so I don’t bump into them. These are small considerations that make a huge difference in my daily life.
To sum up, I realized it is possible with some effort to stay positive and motivated towards life with the reasons to stay alive. With tremendous determination, I convince myself that God has brought me to this world with a place in it for me and he sure must have had a plan cut out for me. I am waiting for that day when I realize that path and will be truly satisfied with my life when once I set myself on that path. That time, I will reach out to others like me, sensitize them to aspire for a life of equal access and dignity, and strive for equal opportunity and recognition. But till then, I must live and do the best job at that and let my life be the example.