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Blind and Visually Impaired Community

Full History - 2019 - 10 - 17 - ID#dj144r
6
Question for people who have gone blind as adults (self.Blind)
submitted by KingWithoutClothes
So, for the past 30ish years I've been slowly but steadily losing my vision. My condition is so that the process from going to visual impairment to blindness takes a very long time. Every 2-3 years I would struggle with new eye problems and a decrease in my vision, followed by a plateau where the situation would stabilize for some time. I've come to find out that this way of going blind is worse than almost any other way. It's so incredibly draining. I feel like these constant health problems have sucked out all the joy, happiness and motivation out of me. Especially the last few years have been extremely tough and now I feel as though I've been driving a hundred miles on one single, last drop of gasoline.

Anyway, just the other day I once again received very bad news from my doctor, after my situation had been stable for about a year. The deal is now this: if I don't do anything, I'm 100% gonna go blind. If I choose to try the surgery that my doctor suggested, there's still a 60%-70% that it will fail and I'll go blind because my eye is so messed up. It's a choice between pest and cholera.

I am incredibly scared. If I say "blind" in this question, I mean fully blind... as in, hardly any light perception. Basically what sighted people imagine blind to be like. Although my vision is very low at this point, the difference would still be astronomical. I still see colors, I see shapes, I see light etc. I see the blue expanse of the sky and the green of the trees when I walk through a forest. I still roughly see my wife... not her specific facial features but her arms, her legs, her head etc.

It is unimaginable for me what it would... or will be like to be in complete darkness. I know that's technically not a correct way to describe blindness but you guys understand what I mean. There are so many things in daily life that I still use my vision for, even though it's very limited. For example I've learned to walk with a white cane and I'm proud because I've become very good at it but the truth is there are still some visual cues I get and they're very crucial. I've tried walking with closed eyes a couple of times and I've gotten completely lost... plus I walk like a horribly drunk man. Same goes for eating. I've tried eating with closed eyes and it was a total disaster. I went back to being a toddler.

I'm asking this question specifically to people who - like myself - have gone blind as adults. I'm less interested in the other stories because if you were born blind or you went blind as a child, getting used to it was far, far easier (which is not to say it was "easy"). Children and teenagers are good at adapting to new situations. I'm in my early 30s and I can tell that I'm already struggling significantly with this.

I'm incredibly scared of all the practical tasks in everyday life. I will have to go through so much training and I'm scared of that too. I mean, even just learning braille will probably take me years. Where do I even begin? But I'm also scared of the emotional part. Seeing the things that I still see gives a tremendous amount of comfort. For example I've always loved colorful things... tie-dye shirts, rainbow-carpets... stuff like that. It's a very simple pleasure that has always given me a lot of calm and joy... kind of like a purring cat on one's lap. I also love the lush green of forests and the golden yellow of corn fields, even if I can't see any details. I can't imagine losing this. And yet, it's probably going to come. How can I find a way to deal with this? If you have gone fully blind as an adult, were you ever able to overcome this?
8i8oio 7 points 3y ago
I’m an adult and I am going blind. It’s been a 9 year road for me. I have Myopic Degeneration.

You’ll adapt in the same way you’ve adapted so far - with time.

There’s no shortcut, no easy way. Braille isn’t hard, neither are canes. And why wait? Learn these things now to give you peace of mind.

You know the answers already ~ you cope by taking one day at a time, and finding joy in new things. Don’t let the fear eat you.
BlueRock956 2 points 3y ago
A training center like the Louisiana or Colorado Center for the Blind will give you training under learning shades. 6 to 9 months of training, and your independence will not depend upon how much vision you have.
Sal0170 2 points 3y ago
Training programs that use sleep shares cam be very helpful. I recently graduated from Colorado Center for the Blind and still use what I learned with the vision I have left.
Duriello 2 points 3y ago
I went through that phase in denial, and after going through rehab I realized that I had grossly overestimated my ability to deal with blindness. Whenever I hear about extremely independent blind people I always wonder whether they have any kind of residual vision, because it does indeed make a world of difference as far as orientation and mobility is concerned. For example I hate navigating open spaces since I can't see the landmarks in the distance.

Regarding Braille, I never found much use for it as even coding is perfectly doable with just a speech synthesizer., Braille displays are prohibitively expensive, and I struggle a lot with it anyway..

My life is stable thanks to the disability benefits. I'm currently living with my retired mother who does some of the chores, and we employ a maid to do the rest of the housework, but while I'm afloat I don't really enjoy life anymore..
razzretina 2 points 3y ago
I would really weigh the pros and cons of that surgery and decide if it's worth the risk. going blind slowly is such a torment but you do at least have the advantage of knowing this is happening and it's going to keep happening. With that knowledge you can find some security, if that makes sense; it's an awful situation, but it's one you know is coming and you have a good idea of what that will be like. Enjoy the vision you have while you have it but also work on the skills you know you will need; putting them off is just going to make it all harder. And learning braille won't take nearly as long as you think, you just have to get started. That was the best thing to come out of going more blind the past couple of years; I rediscovered my love of reading. If you have any knowledge of how to read print, you're halfway there already with braille. I think the best way to deal with this is going to be getting that training, the sooner the better, so you will have some idea of your future and you can find out that there's still so much you've got going for you. Yes this is an awful thing to go through and it's torture, but it's not going to change. Accepting it for what it is and moving forward with that understanding is the way you're going to get through this. And you will always have colors and light, even long after you stop being able to see them. :)
BabyBaphomet_ 1 points 3y ago
I'm 23, and I'm dealing with a very similar situation. My vision is a little better than yours is now, but it is declining gradually.

I think you're doing the best you can, right now. You can post on here for support as much as you need. Cry, scream, punch pillows, vent to us. Going blind SUCKS. But what I've learned from the awesome people here is that the worst part is going blind, not being blind. You will adapt. I promise.

The best you can do right now is keep trying. Learn Braille, keep at it with your cane, make your screen reader as comfortable as possible, learn how to make Braille labels for stuff at home learn everything u can about aides.
marzskillz 1 points 3y ago
I'm not completely blind but do go through training with a blindfold on, yes it possible to cross the street and walk with no vision you rely on hearing and as for knowing where you're going the sun helps a lot during the day. As for cooking, it takes a while along with other tasks but it possible. There program that will teach you all this, depending on where you live.
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