What can I see? Life with LCA
Hey everyone. I thought I'd make this video answering a question that a lot of people ask me on the internet which is how much can I see and you know, essentially how blind am I? I'm blind because of a rare inherited eye disease called Leber Congenital Amaurosis. I was diagnosed at 8 months old and in order for me to have the eye condition both my parents must be carriers. I have a small amount of remaining vision. Which tends to quite confuse people because when they first see me people kind of assume I can't see anything. I read braille, I use a guide dog or a cane. I've always been the kind of person who would receive services for people who are completely blind.
But I have a tiny bit of vision. And how I would describe my vision is I can see light and dark. So I don't see colours at all. Lots of people go "oh so this means you see in black and white," But no it doesn't. I have no concept at all of colours. My brain can just not come up with black and white because I've never been able to see any colours.
So I can tell the difference between light and dark and that is how I see things. So when there's an object I will see it as a dark patch because it's essentially blocking out the light. My vision field is really small, it's not something that we can really measure. So I can actually see in front of me my phone which is on a stand. But I can't see that it's a phone I can just see the light that's attached to it. I can not see as well out the front of my eye, I can see slightly better out of the sides. So up here, um, not much better. But my central vision's just really really weak and it's got worse over time.
I also have photophobia which is extreme light sensitivity. So although I go out a lot in the sunshine sometimes I have to wear sunglasses or a hat because it actually hurts my eyes quite a lot being in really bright light. So I spend a lot of my time at home in the dark, which kind of creeps people out but that doesn't really bother me because it's more comfortable that way. My vision is really unreliable so although if I stood in front of something like a parked car I would be able to see it was there, I can't rely on that vision. And I choose not to because it just doesn't make sense to try and do that. So although I have a small amount of vision I basically don't use it.
Lots of people are kind of surprised by that because they're like "well if you have some vision why wouldn't you make the most of it, why wouldn't you use it?" But what people forget is that vision is not a strength of mine. It is never going to be a strength of mine. And I am far better and far more successful as a blind person, than as someone who is blind but is trying to pretend like I'm not. So I use all the techniques that are associated with blindness, like travelling with a dog, like using a phone with a screenreader.
I can't read print. Like reading in braille as well. And the way I navigate is exclusively with non-visual techniques. And that for me is so much better. So if I was going to look at an object, I actually have ironically a highlighting set here.
I don't use it, I got given it for free at freshers. But if I was going to hold that out at the side of my eye I could see it. Um and I can see it out of this eye. This eye is much, much clearer, that's my left eye. My peripheral vision is much like... So, even though I can see it out of the peripheral vision in my right eye how I'd describe it is out of my left eye it's much crisper.
I guess you could say, so it's much more obvious. I can much more clearly see it, it's definitely there. Whereas...I keep swapping it from side to side.
When I hold it near my right eye it's like it's there...but, is it there. And if I walked past something in the street that was I'd be like, is it there? And I'm holding this very very very close to my face. So that kind of tells you how limited my vision is. I could hold it quite far out of my left eye and I would still be able to see it.
My vision in my left eye is just so much better overall. I also have keratoconus, which is a problem with my kornea's where they are... I'd kind of describe it as not exactly the right shape.
So they're kind of bobbly at the front. That's quite painful and my eyes are quite dry and it does irritate my eyes a lot. And although it hasn't reduced my vision I would say it's really frustrating because just the pain and the discomfort is like kind of frustrating. So I do describe myself as totally blind because although I have a tiny bit of remaining vision it really isn't very much. It doesn't help me.
It's there and I like it because it's what I've always known. And so it's very, I guess comforting. Not because having no vision wouldn't be, but because it's just my normal. So, yeah I like having my small amount of vision but I don't use it like a sighted person would. If you have any more questions then just send me a message my contact details are on all of my pages. So, get in touch, I hope you liked this video and please subscribe if you haven't already.
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