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Memoir Monday: My Fear of Going Blind

It’s recommended that you should get your teeth cleaned every six months and have a routine physical. When you are blind it makes sense to have your eyes checked, or does it? IF they don’t work, what’s there to check anyway? It’s important to make sure they are healthy, or as healthy as they can be, but most times, like everyone else it is easy to get busy and forget to make that appointment. I myself have gone four years now without getting checked by my eye specialist. On the surface there was really no need. Things have been stable and other things in life then take precedent, but it is nice to know someone is there if there ever is a problem.

My biggest fear would have to be losing someone I loved, of course, but my second biggest fear would definitely be losing my sight.
When I say this jokes can be made and assumptions too. I am already blind, but not totally. To me, the idea of losing the little remaining vision I still have is as scary a prospect to me as it would be for anyone else to lose their vision at 20/20. It would effect me in many of the same ways and take away the comfort and familiarity I have come to rely on.

I was born blind, but when I think back to my early childhood I can no longer quite believe how much sight I had compared to now.
I loved to colour and draw pictures and dreamed of becoming an artist when I grew up. I am one of the lucky blind people who knows what colours look like, can remember their brightness and their beauty. I miss them every day.
When I started school I was not sent to a school for the blind and I kept up quite well. I learned to read and write with my peers because I could see large print. I wrote with dark pencils and markers and with thick black lined paper.

I wore glasses until age twelve and they made a world of difference: from a blurry and dim world when I wasn’t wearing them to a whole new level of clarity and focus when I was.
When I was twelve I encountered the first real challenge to my sight that I’d yet faced. Up until that point my small amount of vision was stable. I could not see nearly as much in my left eye as I could in my right; my right eye was my stronger one, yet with tunnel vision. I got by.

I will go further into the troubles I had with my eyes in a later post. For several months things became extremely complicated and frightening and I then found myself coming out on the other side of it all, with less sight and a newly found appreciation for the bit of vision I still had.

I no longer wore glasses because they had no effect. They were useless to me. I was only able to read braille and my hopes of becoming a painter were dashed. things would never again be as they were.

After that I was once again stable. I continued to see my ophthalmologist routinely and everything looked back to normal. There was nothing to see. For the doctors this was clear, but as the years passed I wasn’t so sure.

It might sound silly, but I can’t tell if things have remained stable for my little remaining sight. I see with very little clarity or definition, yet I can still see more than my brother I am sure, who has only ever been able to see light and dark, movements and shadows. I am left to remember fondly what my family look like and with each new person in my life these last fifteen years, only a vague picture is visible compared to the clarity and shape faces used to take on.
I try hard to explain how I see and fall short of it every time. I don’t forget what red, blue, and yellow look like, but I can’t tell whether or not my vision is as bad today as it was ten years ago or even five.

I write this post today because I finally went for it and booked an eye appointment for tomorrow. I am sure he will see nothing new and to him it will be very straightforward, but to me not so much. I want to know for sure what’s going to happen, and as smart and knowledgeable as my ophthalmologist is, I don’t think he’ll be able to answer.

My eye condition is common but my syndrome is not. I hate those unanswered questions: will my sight remain at this level for the rest of my life or will it slowly worsen? Has it slowly worsened over the years? A simple enough question at first glance, but nobody knows; not even me.
Something so subtle and going on over time, over a span of many years. I doubt myself. I try to recall how it used to be and how that might compare to how it is now and I feel more confused than ever.
And then the silly irrational hope that tomorrow he will say there is something he can do if, indeed, it has or is getting worse, something that could bring me back to a time of permanent markers, large print, and bright vibrant colours.

I will try and explain all of this to my doctor tomorrow. I am sure he will do his best to comprehend what I am trying to get across. He’s probably heard it all before. He is a specialist in diseases of the retinas and I am incredibly lucky to have him as my eye doctor, but he isn’t magic. No matter how old I get and how comfortable I think I am with being blind, there’s still that small part of me who hopes, like a child on Christmas, for magic and I fear losing the “sight” I still do have. I know I would adjust, like my brother and friends have, but a world in total darkness remains a huge fear, lurking somewhere, just out of sight.

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