So my vision is a little bit strange, even for Ushers Syndrome. My sister has the classic problem, tunnel vision with the peripheral vision going first. Me? I have doughnut vision.
What does this mean? Well I can see through the middle of the doughnut and around the outside of the doughnut but nothing in the area of the actual doughnut.
Imagine looking at a bush, it's got a bird sitting in it. If I were to look at the bush with part of the doughnut obscuring the bird I won't see it, instead I'll just see more bush, if I move my eyes a fraction suddenly I'll see the bird. It's kind of amazing what the brain can do. A lot of people I speak to who actually have the courage to ask wonder if I just see a black or grey area, it makes sense really, I should be able to see the doughnut right? Wrong.
Instead the brain fills in the doughnut with what it thinks it should be seeing. Back to the bush idea, if I don't see the bird I see more bush, not a big void of nothingness. This I believe is preferable to the alternative of having a black/grey ring obscuring my vision. At least this way I sometimes won't notice I'm not seeing something at all.
This can be the most dangerous part about it. Because sometimes you cannot tell when you are not seeing something, you don't know when to look for something. Am I making sense? Probably not.
If I'm walking along a pavement and there is a black bollard sticking out of the ground and I don't see it, crash and lots of intake of breath with pain exploding. In the daylight and with no glare I can see things to the side of me and things right in front of me, making me believe I'm seeing everything, except I'm not. My daily frustration that really makes the doughnut appear obvious to me is my mouse pointer on the computer monitor. I'll be sending the pointer (and yes, the arrow has been made to be big) round the screen for ages before I see it and yet I think I can see everything on the screen! I can see the desk the screen is sitting on, I can see how many applications are open, basically I can see what everyone else see, except I'm not and I won't realise it until I try to find something. Weird right?
Sometimes of course it is noticeable, take the lipreading, depending what distance I am to someone if I look at their eyes I then can't see their mouth and vice versa. This is incredibly annoying as so much communication is lost this way as I have to lipread to help me hear and understand what is being said but then I may miss the humor in the sentence because I haven't seen the twinkle in their eyes.
Of course in the dark it's a completely different story. When it starts getting dark the normal Usher eyesight problems kick in, that is tunnel vision. If someone comes up to me but to the side of me I won't notice, and of course if I don't hear them too I really could be perceived to be ignoring them - except I'm not! Mostly. This starts to happen as soon as it starts to get dim, with one of the hardest things I have to deal with is pubs and bars. After all it's the norm to have the lights turned down to create the right atmosphere isn't it? As I say, a real pain for me.
How am I coping? In the daylight, pretty well considering. At the moment whenever I'm actually in a potentially dangerous situation, like walking (OK that isn't very dangerous, but it could be for me) I look around a lot. Not just moving the head round but moving my eyes around. This is in practice quite hard to do, at least constantly. As I said before because my brain thinks it's seeing everything, it's saying 'Why are you looking around like crazy? You can see everything'. I probably do look like a complete crazy doing it but hey I think it's stopped me crashing into quite a lot, not completely but it's definitely helped some! As for the dim and dark situations, not so well but that's when I get my fantastically bright mini torch out and cling onto anyone that is with me. Mike has gotten quite used to me holding onto other people's arms as a result! After all needs must.
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