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Blind and Visually Impaired Community

r/blind

Full History - 2021 - 08 - 18 - ID#p7123o

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Bilateral cortical blindness. (self.Blind)

submitted by zzaacckk8

Does anyone else not know exactly what is wrong with their eyes? It's frustrating bc I don't understand my diagnosis bilateral cortical blindness. What Im told is my brain doesn't recognize what is seeing... the Dr uses an analogy of..." It's like being in a restaurant in a foreign country. You hear but you can't understand" what I'm struggling to understand is if my eyes see and I don't have major brain damage why can't I see? I don't know what to say when someone asks me and it's not even explaining to them l truly don't know what is w ring. Sorry for the rant and if this is not appropriate place to post let me know.

lil-alfalfa-sprout 3 points 1y ago

Can I ask you something? Do you ever see anything at all, if even for a moment? Like a moving light, a ceiling fan, or something shiny?

zzaacckk8 [OP] 2 points 1y ago

Yes I'm very open ask anything...I have,20\20 acuity but less than 10⁰ so like 3"x5" oval tunnel vision to the Maxx lol

Agreeable_Morning_60 2 points 1y ago

Your brain is like a computer. It has hardware (the brain tissue, nerves, vessels, etc.) and it has software (functioning component). The software part of you brain is what takes those physical impulses (light, sound, smells, etc.) and translates it into code (feeling and senses), which in turn creates what you see, hear, smell, etc.

A lot of issues when it comes to vision loss tend to be physically or structurally related issues. Dying retina, fluid build up, trauma, etc. However, people like you and me (I have FND as well as Usher) have a software issue. All the parts are working as they should, BUT the translation into “code” is not working as it should. Its like not having the correct update to play a video game, the game wont work properly even though you have the same hardware as before.

Hope this helps!

zzaacckk8 [OP] 1 points 1y ago

How do you add your diagnosis to under your name?

Agreeable_Morning_60 2 points 1y ago

Go to r/blind then click the “…” and choose “change user flair”

zzaacckk8 [OP] 1 points 1y ago

This does help some. I guess I get all that. I just don't understand the WHY it's not. From the brain damage?

Agreeable_Morning_60 2 points 1y ago

So medically they dont know WHY exactly. Same thing for RP, they dont entirely understand RP as well. Just know its not a conscious thing. You have no control over it. Its not like you can “see”. Its kind of like having a nightmare, you dont get to control when you have them or why, it happens subconsciously, out of your control. Just because its not caused by “damage” per-say, doesnt make you any less blind. People have heart disease, but not everyone has heart disease because they smoke, but some do. Eyes are no different in that sense.

[deleted] 1 points 1y ago

[deleted]

tree_trunks96 1 points 1y ago

Hi, some text that really helped me understand cortical & cerebral visual impairments is this article by Gordon N Dutton et al, Cerebral Visual Impairment; Working Within and Around the Limitations of Vision:
http://www.liv.ac.uk/~pcknox/Publications/trimble/CVI%20chapter%20for_hers-Dutton.pdf

Hope this helps!

[deleted] 1 points 1y ago

[removed]

zzaacckk8 [OP] 1 points 1y ago

Thanks for trying to help me with this.

[deleted] 1 points 1y ago

[removed]

zzaacckk8 [OP] 1 points 1y ago

Thanks for the help.

zzaacckk8 [OP] 1 points 1y ago

More 2x3 I can see accurately,3x 5 only colors.

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