I started writing this article a few months ago afte reading Sarah J. Blake's article on the emotional impacts of vison loss. At the time, I quite a bit disagreed with the statements Sarah made. She for instance still had surgeries for ROP complications while she was having about the same sight I do. I felt - I ought to feel - such sight was useless and I didn't care about it.
I could remember myself crying that I wasn't blind whenever my parents or others would call me blind. "She for example says that she does say that she's visually impaired, but not that she's blind. 'But actually I am,' she softly adds." This was what a remedial educationalist once wrote about me in her report. But that was 1998, and I was 11 and attending a school for the blind where everyone showed off a lot about their sight and whehter one could see 1% or totally nothing made a huge difference. Now I was 17 and I found it to be weird that someone with my sight and of my age or older would care about losing the sight she had.
So I wrote the article about my elementary school experience, and I tried to analyse why I was having such difficulty accepting my blindness at the time. The article was written from a certain distance, as if I were looking through some window on my past and reflecting upon what I saw. The "wise 17-year-old" was criticising the sensitive 12-year-old I was fortunate to have left behind.
But that was in December of 2003, and I was thinking that my eyesight was stable and I was having no complications from my ROP. I was likely to lose my sight someday and I knew about the complications that could arise from ROP, but I wasn't frightened - the only thing that scared me was the fact that Glaucoma was a possible complication, which I knew was quite a painful disease - and I didn't pay excessive attention to that.
My opinion changed radically on the evening of Thursday march 4, 2004. My sister was standing in my room and had just said that she'd sent me an E-mail. Then she commented on my left eye looking weird. It appeared grey and the pupil was "white". I said I didn't know what it was and my sister went downstairs to ask my Mum. She came upstairs and told me it was a cataract. We discussed my treatment options and what we thought the outcome would be and after a few hours I'd decided I didn't want to have surgery for it. During this discussion with my Mum, she and I repeatedly referred to my current and expected vision and I was quite surprised that I did actually care about that.
The next day, I discussed my cataract on the ROP-support mailing list and I allowed myself to admit I actually did care about my sight. I felt pretty weird about that, cause I thought I'd decided long ago that the little vision I had didn't make a difference. But as the days went by, I found myself consciously trying to see something more often than I'd done before.
I had some chats and E-mail exchanges with people, including with Sarah, about these issues in the days that followed. I reread Sarah's article and suddenly I found that I'd been pretty judgmental criticising her views. I felt pretty scared to lose the appreciation of my sight, and I noticed what difference the little sight I had actually made. I realised that I'd actually forced myself not to care about it, for it didn't make the difference it did on the school for the blind - where one was "less worthy" if he/she had less sight -, so I reasoned that all the concerns I had about my sight should be over.
As I experienced serious pain in my eyes a short while later, my concerns got even greater. Mum immediately suggested it could be Glaucoma, and that was the only thing I didn't want it to be. But I realised it would be too accidental that just now - only a few days after the cataract had been detected - I'd get one of the only two other ROP complications (the other being retinal detachment) I knew of at the time. Still, I went to an ophthalmologist, who determined my intraocular pressure to be fine - he unfortunately didn't know what was actually wrong -, and also told my Dad and me he wouldn't advise us to have cataract surgery. I was happy at least someone who was supposed to know more about it than my Mum and I had also advised not to treat the cataract - not that I was looking to consult an ophthalmologist on it, but now that I saw one anyway, it was good to have a little opinion about it too.
Since March 4th, I think I'm more consciously appreciating the sight I do have. I know I'll eventually lose most of it - if not everything - from the cataract, but I'm happy I still have some sight. I realise that I do care about the remaining vision, and I feel that it's not "childish" to appreciate one's sight.
