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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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10 thoughts on “Memoir Monday: My Fear of Going Blind

  1. Steve P says:

    I remember back when we were young, you and your brother and I would be playing, like friends always do, and you would ask the question, can you see? I would say, no, and you would say, I can see! So I always, well for a few years or months later thought, you both could see, and I would get angry when I couldn’t find something, and I would start to get frustrated when you would say, I’m looking, but I can’t find it, and I would say, well, you have eyes, you can see, why can’t you find it! I know that there isn’t any cure for my RP, but, I’ve always wanted to know, what certain things look like, E-G, the flowers, the people in my life, and of course, Cullen, my service dog! With the dog, people have told me, he’s a black Lab, and he’s really shiny! For me, when I think of shiny, I always think of something clear, like glass on a window, or a TV screen!

  2. Hi Kerry,

    I found your blog through the posts you did with Candace Johnson and I can’t tell you how thrilled I am too meet you!

    My little sister, Tia, (well, she’s thirty-four now, but still little to me) was born mostly blind and her story is almost identical to yours. I wrote a bit about her in the post http://christawojo.com/2014/03/19/of-human-bondage/

    Her sight is almost completely gone now. She wants to become a writer too, but it has been a difficult road. She tried to hang onto to using her CCTV for too long, and then finally switched to Braille. I want to publish her work, but only she can read it.

    Last October I brought her to stay with me in Panama for two months to work on a book she wrote. She read her manuscript to me from her Braille copy and I typed it all. It was not an efficient way to do things, to say the least. So I did some research and organized some computer classes with the Lighthouse foundation in Orlando where she lives with my parents in nearby Kissimmee. I’m hoping she can at least learn how to type so she can email me her writing and I can edit it and publish it for her. I bought Dragon for her, but she still needs to learn the basics of an operating system first.

    She is very hesitant about trying new technology. She had a desktop set up with JAWS and Zoomtec, but because she lives with my technologically-challenged parents, the system could not be updated and maintained properly. Now it has been years since she used a computer. I live too far away to help 😦

    I admire what you are doing so very much. I am new to WordPress. If only I could teach her to blog too! I would love to know how you were able to learn how to use computers, etc. And I would be so grateful on any advice as to the hardware, software, and applications you use.

    Thanks so much! I look forward to reading your blog.

    • Nice to meet you. I am happy to read your blog. I know how hard it can be to keep up with the technology. I still have an old fashioned broiler, but use it only rarely. I think knowing how to type is essential nowadays, for visually impaired and sighted people. I wrote my first draft of my memoir Peace Of Cake on my broiler, way back when. The computer is much more efficient. I used a CCTV once, when I had more sight. I used JAWS for years, but switched over to Apple and now my MacBook and iPhone are my life lines. I am always struggling to learn and keep up with technology. I am good with words and not so good with computers, but I am lucky to have my brother, who is also blind, but who knows much more about technology. I also have a few friends who are experts. My boyfriend is an IT guy and is always there to help. I can’t imagine what it must be like for your sister, not having any resources available to her. I have had my battles with technology in the past, but glad I use Mac now. JAWS was a lot less reliable. I am glad to hear my blog has touched others and I hope to keep that up. I have several things on the go at the moment, but it is definitely a hard road for a writer. I hope for publication, but it isn’t something that happens overnight. Sure, I dream of J.K. Rowling’s success, but I know I have to follow my own path and I am determined to persevere. Let me know if there is anything else I can do for you or your sister. I am always happy to help.

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  5. Thanks for sharing this Kerry. It is interesting to learn more of the background to your blindness. I am sorry you didn’t manage to have your dream of being a painter, and pleased you are now making music – it is another good creative outlet.

  6. kimbawhite says:

    I don’t know about you but I believe all things are possible with God. One of my favourite quotes from Mary Baker Eddy, a christian healer and author of Science and Health with key to the Scriptures.
    ‘Divine Love always has met and always will meet every human need’.
    She goes on further to say, Our Father knows what we need even before we ask. Something else I’ve tried to put onto practice is to be grateful in advance of healing. By doing this we become expectant of good things and that’s a better place to be. All my love xx

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