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07 April 2011

Not yet dark, but getting there

At the age of six I was diagnosed with a rare degenerative eye condition. Within the extent of a year or two, my sight went from perfectly normal to about ten percent.

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At the age of six I was diagnosed with a rare degenerative eye disease called Stargardt’s disease, a form of macular degeneration. This is a progressive condition in which the part of the retina called the macula is damaged, resulting in lost central vision. Within merely a year or two, my sight went from perfectly normal to about 10%.

At the time though, all I knew was that there was something wrong, and that I was to go to a special school for the blind. I didn’t understand how the cones and rods on my maculae were slowly degrading and accordingly left me incapable of distinguishing detail. Like most kids, I was just interested in having a good time.

The only thing of use I learnt at the special school was to read Braille. And that only took about a year or two. The rest of the time was spent dreaming of a “normal” childhood.

The predominant perception at the school was that blind or partially sighted kids should aspire to become basket weavers, telephonists or piano tuners, or maybe just live out their lives in some institution where they would be protected from the harsh world out there. It got so bad, you started believing it.

Back to a normal school
Yet, with the help of an open-minded teacher, I managed my escape to a normal school in grade 10 (standard 8). And, despite the predictions that I wouldn't make it, my marks went up dramatically, and I averaged an A for the rest of my school career. The difference was that, for once, I was expected to do well.

With the right support, and a bit of technology, all the technicalities of getting your notes, writing exams and not being able to see on the blackboard, could be overcome. Much harder to deal with were the scars that my time in the “special school” had left on me. I simply couldn’t relate to “normal” kids. At some very basic level, I still felt that there was something wrong with me.

Lack of sight not a defining characteristic
In time though, mainly thanks to living in the “normal” world, I got over it. As a friend once said to me, “Some people have weight problems, others have knock knees.” I have a substandard pair of eyes. This shift to seeing your disability as “just another characteristic”, rather than that which defines you, was key to my adjusting to the real world.

I once heard a guy tell of how he couldn’t read a street name, and had to climb a pole so that he could get close enough to decipher the sign mounted on it. Funny as it is, it illustrates a fundamental reality of what it’s like to live with an eye condition – you have to adapt to the world, not it to you.

Modern technology can change lives
With the technology available today, blind and partially sighted people are more independent than ever. With the right software, you can surf the web, use spreadsheets, write computer programmes, send e-mails, use word processors, and do just about anything other people can do on a computer.

Blind people are becoming programmers, mathematicians, journalists, psychologists, successful business people, and a lot more.

Having an eye problem still “tastes like gore”, to quote JM Coetzee totally out of context. But, so does having a weight problem, struggling with diabetes, or striking a blank when asked to calculate the square root of 81.

It is just something you deal with, and then get on with the day-to-day business of living. And, today more than ever, the technology is there to help you on your way.

Thus, even though my sight will probably deteriorate even more over the coming years, it is not something I think about anymore. I am as used to it as the next guy is to his balding head.

(Max Visagie, updated April 2011)

Take a first hand look through a diseased eye here.

Useful resources:
South African Optometric Association
Tel: 011 805 4517
South African National Council for the Blind (Their website is highly informative and helpful)
Tel: 012 452 3811
Retina South Africa
Tel: 011 622 4904
Ophthalmological Society of South Africa

 
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