Blind and Visually Impaired Community
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Dealing with changes in vision (self.Blind)
submitted by Mokohi
Hey guys! So, lately, I injured my right eye in some way. The doctors thought it would be an easy fix and would mostly clear up on its own, but that hasn't happened and now it seems like this might be more serious than we all thought. I'm not sure if it's temporary or permanent at this point. I've been low vision my whole life, so I'm surprised by how scary this all is for me. I never realized how much I rely on what vision I do have left and being down an eye and left with only my already very low vision in one eye has been really scary. I'm trying to figure out how to adapt my whole life around this injury and it's so overwhelming. So, I was wondering. If you're someone who has lost vision either temporarily or permanently, how did you deal with it? What changes did you make? How did you deal with it emotionally?
blackberrybunny 2 points 2y ago
You are not sure HOW you injured your eye?!?? Did you hit it? Get hit? Sleep on it wrong? Get grit in it? I mean, I would remember how i hurt one of my eyes. I'm a little perplexed.
But I CAN understand how damn scary it is to lose what little sight you have. I was a student at the Louisiana Center for the Blind for 6 months, and anyone who had any vision, or even just light perception, we were made to wear a type of blindfold, called a 'sleep shade' from 9-5, every day, sometimes even after 5pm or on weekends, if there was an activity scheduled. I had no idea how damn terrifying it was to not even be able to see a crack of light, every day, for 6 months. So I get it.
How to deal with it emotionally? Well, you have 2 options. Totally break down and get over it and move on, or just accept it now and move on.
Learn how to use the technology on your phone. Contact blindness resources, like your local Division of the Blind, or a larger nationwide agency, like the National Federation of the Blind. There are TONS of agencies, and any of them, ALL of them, can help you. Get a counselor through them.
If you don't have enough sight to navigate around, you WILL need to learn how to use a white cane, through an Orientation & Mobility Instructor. When I was at the LCB, I learned how to use one, and quick! There was NO messing around, no easing into it. They put a cane in your hand and they taught you how to use it efficiently. It was almost magical. In many ways, it truly is!
Best thing to do is get a counselor from an organization who can help you figure all of this stuff out. They have the resources, the know-how, and the equipment you might need.
What do you mean by, "the doctors thought it would be an easy fix, and would MOSTLY clear up on its own"? What the heck does that even mean? WHAT did they diagnose you with? And what was their 'easy fix'??? Did they give you eye drops? Steroids? Any laser surgery? ANY surgery? What did they do???
But I CAN understand how damn scary it is to lose what little sight you have. I was a student at the Louisiana Center for the Blind for 6 months, and anyone who had any vision, or even just light perception, we were made to wear a type of blindfold, called a 'sleep shade' from 9-5, every day, sometimes even after 5pm or on weekends, if there was an activity scheduled. I had no idea how damn terrifying it was to not even be able to see a crack of light, every day, for 6 months. So I get it.
How to deal with it emotionally? Well, you have 2 options. Totally break down and get over it and move on, or just accept it now and move on.
Learn how to use the technology on your phone. Contact blindness resources, like your local Division of the Blind, or a larger nationwide agency, like the National Federation of the Blind. There are TONS of agencies, and any of them, ALL of them, can help you. Get a counselor through them.
If you don't have enough sight to navigate around, you WILL need to learn how to use a white cane, through an Orientation & Mobility Instructor. When I was at the LCB, I learned how to use one, and quick! There was NO messing around, no easing into it. They put a cane in your hand and they taught you how to use it efficiently. It was almost magical. In many ways, it truly is!
Best thing to do is get a counselor from an organization who can help you figure all of this stuff out. They have the resources, the know-how, and the equipment you might need.
What do you mean by, "the doctors thought it would be an easy fix, and would MOSTLY clear up on its own"? What the heck does that even mean? WHAT did they diagnose you with? And what was their 'easy fix'??? Did they give you eye drops? Steroids? Any laser surgery? ANY surgery? What did they do???
Mokohi [OP] 2 points 2y ago
I didn't really provide enough information, sorry! So, no, we don't know what's going on yet. The doctors said it looked like the viscous fluid separated in my eye and popped a blood vessel. They said to use some eyedrops for the irritation and pain and that the loss of vision should go away on its own. However, it didn't get better and they referred me to a specialist, believing it to be a tear in the retina. I don't know how I would have torn the retina as no, I have not gotten hit, poked it, or anything that would be obvious. I'm waiting to see what the retinal specialist will give as far as an actual diagnosis and treatment.
As for technology, I'm working with the accommodations center at my university to figure out tools we can use, and I have a little bit figured out, still figuring some things out. Thankfully, I was always low vision, so I already have a cane. Is ZoomText good in your opinion for dictation and reading? That's what I'm planning on using for school, but I've only ever used the magnifier. So far, it seems okay, bit was curious of any advice on if there are better options or if it's more of a "go with what you like better" situation.
And thank you! It's scary and overwhelming, but I guess you're right. Just sorta have to slowly figure it out. Hopefully this will be something they can treat easily, but right now, they aren't sure if it's a tear or something else entirely, and I will have to see what the specialist says.
As for technology, I'm working with the accommodations center at my university to figure out tools we can use, and I have a little bit figured out, still figuring some things out. Thankfully, I was always low vision, so I already have a cane. Is ZoomText good in your opinion for dictation and reading? That's what I'm planning on using for school, but I've only ever used the magnifier. So far, it seems okay, bit was curious of any advice on if there are better options or if it's more of a "go with what you like better" situation.
And thank you! It's scary and overwhelming, but I guess you're right. Just sorta have to slowly figure it out. Hopefully this will be something they can treat easily, but right now, they aren't sure if it's a tear or something else entirely, and I will have to see what the specialist says.
blackberrybunny 1 points 2y ago
Hello again Mokohi,
I hope I didn't come off as too arrogant in my first reply. I apologize if I did. We had someone on here the other day acting dumb, saying they had 20/40 and they wouldn't want to live the lives us blind people lead. It was insulting and infuriating, and thankfully their post got pulled quick....
SO-- I know about the vitreous gel separation, because i have been experiencing that for the past 4-5 years!
I have 20/200 and 20/400 and I am 52, born with ROP. Retinopathy of Prematurity. Also known as Retrolental Fibroplasia if you want a mouthful of something more medical and sinister sounding. I was born about 15 weeks too soon, and then I was put into an incubator right away and blasted with more oxygen than I needed. I've been legally blind my whole life.
I started nothing a very distracting and aggravating "thing" in my vision in my left eye. I didn't know how to describe it, really, other than to tell my eye doctors that it seemed like I was looking through a gauzy billowing sheer dark grey curtain, or a spiderweb, and it kept moving, all of the time, near the bottom of my visual field.
They knew right away what was wrong! And they explained it to me like the gel in my eye was pulling away from the outed edges, and perhaps in my retina area too. This is VERY common for people my age, 50 and over, who have ROP!
What to do about it? In my case, nothing. It's not worth the risk of losing more or all of my vision by trying to fix it. They did mention something about an injection into my eyeball, (Oh HELLO NO!), or some kind of 'cryogenic' procedure. Again, hello no!
I have had this poor vision my whole life, and I've adapted to it. Most of the time, people don't even realize I have a vision problem, unless they see me with a white cane, which I don't use all of the time. I am not going to risk it now!
How old are you? Do you have Retinopathy of Prematurity too? (ROP)
OR-- I'm sure they've checked, but could you have cataracts? I got them, they came on pretty fast, and grew thick, and I had them removed and O M F G! What a difference! However, I was still legally blind, and I was okay with that.
Oh, I forgot to mention that when my get started to separate, I didn't do anything to actually injure my eye. It just happened, in my late 40's, and they all told me it was normal for people who have ROP. I saw three specialists, one even came from the north, out of Pennsylvania, to see me, here in Florida. So I am 100% sure they all knew what they were talking about. I had TONS of tests done, and each eye dr. appt took three long hours....phewww.
I hope I didn't come off as too arrogant in my first reply. I apologize if I did. We had someone on here the other day acting dumb, saying they had 20/40 and they wouldn't want to live the lives us blind people lead. It was insulting and infuriating, and thankfully their post got pulled quick....
SO-- I know about the vitreous gel separation, because i have been experiencing that for the past 4-5 years!
I have 20/200 and 20/400 and I am 52, born with ROP. Retinopathy of Prematurity. Also known as Retrolental Fibroplasia if you want a mouthful of something more medical and sinister sounding. I was born about 15 weeks too soon, and then I was put into an incubator right away and blasted with more oxygen than I needed. I've been legally blind my whole life.
I started nothing a very distracting and aggravating "thing" in my vision in my left eye. I didn't know how to describe it, really, other than to tell my eye doctors that it seemed like I was looking through a gauzy billowing sheer dark grey curtain, or a spiderweb, and it kept moving, all of the time, near the bottom of my visual field.
They knew right away what was wrong! And they explained it to me like the gel in my eye was pulling away from the outed edges, and perhaps in my retina area too. This is VERY common for people my age, 50 and over, who have ROP!
What to do about it? In my case, nothing. It's not worth the risk of losing more or all of my vision by trying to fix it. They did mention something about an injection into my eyeball, (Oh HELLO NO!), or some kind of 'cryogenic' procedure. Again, hello no!
I have had this poor vision my whole life, and I've adapted to it. Most of the time, people don't even realize I have a vision problem, unless they see me with a white cane, which I don't use all of the time. I am not going to risk it now!
How old are you? Do you have Retinopathy of Prematurity too? (ROP)
OR-- I'm sure they've checked, but could you have cataracts? I got them, they came on pretty fast, and grew thick, and I had them removed and O M F G! What a difference! However, I was still legally blind, and I was okay with that.
Oh, I forgot to mention that when my get started to separate, I didn't do anything to actually injure my eye. It just happened, in my late 40's, and they all told me it was normal for people who have ROP. I saw three specialists, one even came from the north, out of Pennsylvania, to see me, here in Florida. So I am 100% sure they all knew what they were talking about. I had TONS of tests done, and each eye dr. appt took three long hours....phewww.
Mokohi [OP] 2 points 2y ago
No problem! I went to a school for the blind and have been low vision my whole life. I would be very upset to hear that kind of talk as well as many of my friends are completely blind and implying their lives are somehow pitiable or awful is just terrible. Visual impairment is a wide spectrum and everyone is capable of living completely fulfilling and average lives regardless of how good or bad their vision is. It does feel scary adapting to less vision, but it's not the end of the world. It's just a little scary and very new. My other eye has very little usable vision, so it's been a very disorienting adjustment. I never realized how much I used my right eye before.
I do not have ROP, but I did once have cataracts. I was born with congenital cataracts, amblyopia, and one of my eyes was touched during cataract surgery which has left it permanently dilated. I have artificial lens in my eyes The spiderweb you are describing is similar to what is happening with my right eye though. It has become extremely blurry and there's just a permanent white haze over it with floaters circling around the edges. I am 25 years old, so from what I've read, it's unusual for it to start this early, but it may be due to my history with cataracts. I'm not sure yet until I see the specialist. My general doctor did not suspect a reoccurence of cataracts though.
I do not have ROP, but I did once have cataracts. I was born with congenital cataracts, amblyopia, and one of my eyes was touched during cataract surgery which has left it permanently dilated. I have artificial lens in my eyes The spiderweb you are describing is similar to what is happening with my right eye though. It has become extremely blurry and there's just a permanent white haze over it with floaters circling around the edges. I am 25 years old, so from what I've read, it's unusual for it to start this early, but it may be due to my history with cataracts. I'm not sure yet until I see the specialist. My general doctor did not suspect a reoccurence of cataracts though.
blackberrybunny 2 points 2y ago
My ROP caused my cataracts too. I have lenses in my eyes also. The cataracts will never come back, as they cannot grow on artificial lenses, so that is the good news.
I don't know much about amblysopia. Actually, nothing at all. I think David Bowie had a permanently enlarged pupil too. Most people thought he had eyes of different colors, but no.
I'm short on time right now, so I am sorry I can't make much of a reply.... I will try to get back to your post soon. I hope the specialist can help you!
Please take care!
I don't know much about amblysopia. Actually, nothing at all. I think David Bowie had a permanently enlarged pupil too. Most people thought he had eyes of different colors, but no.
I'm short on time right now, so I am sorry I can't make much of a reply.... I will try to get back to your post soon. I hope the specialist can help you!
Please take care!
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