"Everything has its wonders, even darkness and silence, and I learn in whatever state I am in, therein to be content."..:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
~Helen Keller
It would be nice if everyday could be full of fantasy and erotica but the truth is that is but a fraction of my life. Occasionally reality steps in and reminds me that there are things not quite as pleasant.
This has been for me what I call a 'bad eye' week. Sometimes I struggle even with my glasses to read what I find on the computer screen. Thank you ever so much Web 2.0! All those nice subtle shades on top of a white background… And what happened to the concept of making the internet disability friendly? I think the problem is that people make the error in thinking that you either see or you don't, like there's no place in between. Well let me tell you – there is in between.
First, for those who may not know, I have a hereditary eye condition called Retinitis Pigmentosa. It's a degenerative disease that I was diagnosed with at the age of nine so this is something I've known about all my life. Although knowing about it and now experiencing it's much increased progression now that I am older is a lot different than I thought it was going to be. I am legally blind by definition that my peripheral vision is less than 20°. Some may not understand what that means so I'll explain. The average person has a visual radius of 180°, so that even when you're looking straight ahead you are able to see a wide view of what's around you without looking directly at it. Also that area where the fields overlap between the eyes gives you your three dimensional vision and your depth perception. Now, try to imagine going through your world without that. Try looking through two paper towel tubes and you'll get the basic idea of what it might be to see how I see. Ah but it doesn't end there! The central vision is affected too! I still have corrected vision of 20/40-50 but now put a sort of sunglass filter at the end of those tubes because the rod and cone in my eyes that process light are dying so when it's dark for me it's REALLY dark and when it's light it's not as light or depending on the type of light – its glaringly bright! (The glare isn't as bad now that I've had cataract surgery in both eyes as it once had been) There are times, such as this, when the central vision is affected. My vision goes between clear to blurry and back again. The harder I try to focus the worse it gets and if I work to hard to get my eyes to work I end up straining them to the point where I can find it even harder to see for days. My doc says this is due to a side condition called Cystic Macular Edema. In other words, being female whenever my body decides to retain fluids my eyes pay the price for it too. I do have drops and those help but they sting a great deal and I have to use them consistently for a couple days before I anticipate this issue to occur to reduce the problem.
Over the years I have been lucky that it progressed very slowly. My family first suspected there was a problem when I would run into things in the house at night. One of the first signs of the disease is night blindness. From the beginning it set me apart from my peers. I couldn't see the stars as easily at night, people who didn't know about my condition just thought I was clumsy because people always believe their own assumptions rather than seeking the truth. It's kept me from participating in many of the normal social activities that most teens engage in. It showed me who were not my friends were when they couldn't be bothered to include me because I was work to assist. It kept me from having the complete freedom that driving affords, it's kept me from doing many things that others without it take for granted. Now, let me tell you what it's given me. It's given me time to be more thoughtful about myself, my life and others. It kept me from going out and engaging in some, not all, of the dangerous behavior that my peers threw them selves into. It made me appreciate the absolute glory of the things around me. It made me choose better friends because often when being out with them I literally had to entrust them with my life by allowing them to guide me. (*grins* Tramping around in state parks, climbing up and down hills, walking over narrow high bridges all in the dead of night seeing only blackness and feeling only the warmth of the hand or arm beside me… Funny how brave you can be when you don't see the dangers surrounding you) There have been disadvantages as well as advantages. A couple good points - I've never had to be the designated driver. I get to use a sort of hands on approach to seeing things in my world – people included. The bad - I have to rely on others to get me where I need to go so I don't have a personal escape other than inside my own head. And worst is the knowledge that my son not only inherited my quick cutting wit, my stubborn streak but also this damned disease.
When I was younger it was easy to know I was going to lose my vision because I had no concept of what that entails. At the time it just meant that I got a lot more attention from my eye doctors and maybe felt a little outside my peers but I was that way with or without the RP. For the longest time I was very lucky in that it didn't progress that rapidly. That has changed. Sometimes I wonder where to find the strength and heart to go blind with grace and dignity. I think that having known so young does give me the advantage of having had the ability to learn to adapt more readily than one might who is stricken suddenly. But there's this limbo that I exist in now. Seeing and not seeing enough to be confusing and even dangerous. I've often said that I had RP, it didn't have me. Is certainly isn't who I am although it has had an impact. It's no different that any other struggle that any of us might face. It won't kill me, at least not directly, although it does sometimes make me feel frighteningly vulnerable. It's a specific ambiguity, if such a thing can be said, which at least means it's something I can focus on overcoming. Time will tell whether I do it well or not. But I take inspiration from Helen Keller's quote above. My interpretation of it is that the beauty in life doesn't end simply because the eyes are no longer able to behold them. We are conduits through which our life passes; it is either minimized or amplified via the lens of our being. Today isn't a day it'll burden my heart – tomorrow is tomorrow, I'll see what that brings as it comes. As with my eyes, some days are easier than others.
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