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Blind and Visually Impaired Community

Full History - 2019 - 11 - 15 - ID#dwxczr
19
The thought of losing it all... (self.Blind)
submitted by Flyaway-Rainbow16
I've been blind since birth. I have some remaining vision, but it's not significant or anything.
I have light perseption, obviously, and can see colours. I can't distinguish shapes or anything, and yet I still use the little bit of vision I have to the extreme.
I was explaining this to someone earlier and mentioned to them how I'm fully aware that I could someday lose all of the vision I still have. When I was 12, I went through an absolutely terrifying time where things would blur up and I could barely see at all.
After a weekend of that, I noticed how a tree looked further away and less noticable than it usually was.
Now I'm stuck thinking about this and can't stop. I will let it go eventually, but this would absolutely destroy me if it happened.
I depend on my vision to look at clothes, to locate large, light-using objects, everything... And this may not seem like a lot to anyone else, but it's all I have and that's fine, so I just... Use it.
Please, I'm not looking for "Let it go's" or "If you keep thinking about this, you'll never enjoy your vision"'s... I just want someone to hopefully understand, to try and encourage, anything that could potentially help.
If you've read this far, thank you.
merinthium 6 points 3y ago
Firstly I apologise for formatting but I am typing this on mobile, I will try to make this as easy for a screen reader to read if you use one as I can.

Whilst I'm not visually impaired myself I work with people who are every day (it's my job to provide information and support for people with sightloss).

One thing I have always found and was taught when I first started the job (aswell as at college) was that the loss of anything is horrible to experience and grief usually follows. I work with people who know that eventually they will lose all of their sight, some days it breaks them and they feel it's not worth it. But they then realise that even though they will eventually lose their sight there are people there to support them, people there who will listen to them and not judge them for how they feel.

It is scary, it is somthing that will always play on your mind but what you must remember is people are there to help you, technology has come along way, we have devices that can tell you what currency you have in front of you, the colour of your clothes and more. You are bound to feel scared and upset in your condition and there is nothing wrong with that. It's what makes you human. If you have concerns or feel you are over thinking speak to your eye specialist, optician or even your doctor. You are not alone, and you are stronger than you realise. Support is here for you dont ever forget that.

I realise this may not be the best post in the world for this subject, but it is important for you to know that help is here if you want or need it.

Edit: I also apologise if this comes across as insensitive as it is not meant to be.
Flyaway-Rainbow16 [OP] 3 points 3y ago
It's something as silly as the shade of blue something is or how two colours look next to each other and as things stand right now, technology can't replicate that... Thank you for your comment.
merinthium 3 points 3y ago
It's not silly, you are experiencing what thousands of people in your situation experience. If you are in the UK the RNIB (0303 123 9999) may be of use to you, they can put you in contact with services in your local area that will help you in anyway they can.

It is a difficult situation for me to fully comment on as I have not experienced it myself and can only go by what those I work with tell me. But hopefully someone who has some experience with what you are going through comes across this post and provides you with information and advise that will be useful to you.

I wish you all the best.
HoleMax 3 points 3y ago
I understand this completely. I am slowly losing my vision and everyone is "Wow..you have such a great attitude about it!". Yeah..NOW I do, but watch me freak out when it's all gone. I keep that to a minimum and try to just see as much as I can and know that I will remember it when I can't see it. In the meantime I am prepping myself for full vision loss..organizing things (ie my pantry) so it will be easier to manage later. Knowing that it is coming allows me to TRULY appreciate what I have now. I honestly consider myself very lucky that I have been given the time to make the adjustment.
Sal0170 3 points 3y ago
Sorry for any spelling or formatting mistakes I'm on mobile.

I just wanted to throw in my 2 cents. I am currently 25 and started losing my vision at 17. Some days were greatly worse than others, But after some time of progressively losing my vision. I attended an independent training program. I don't want to say I can relate to your situation exactly but I am always here in case you need somebody to talk or vent to!
Flyaway-Rainbow16 [OP] 2 points 3y ago
Thanks. It's not even the independence thing so much, like I think that logically I know that I'd be able to get by, but the prospect of not seeing colour? Of not knowing if the sun is shining when I'm inside, or of not being able to see if it's going to rain, or of not knowing if my curtains are properly closed without having to touch them, just freaks me out and provides more anxiety than I know how to handle.
BlindWarriorGurl 2 points 3y ago
I completely understand. I don't have that much vision either, but the thought of not being able to see the sunlight that warms my face or look at the big blue sky anymore is horrifying.
Yakc 2 points 3y ago
It sounds like you're upset that you're not only losing a useful thing, but a beautiful thing that you enjoy and appreciate. Losing your remaining vision will be a very difficult time I'm sure. If you're feeling overwhelmed right now, it might help if you spend some time focusing on other things that are beautiful that don't need vision to appreciate them. Music. Conversation. Loved ones. Listening to nature. Creating something new. When anyone goes through an especially challenging loss, whether that's a person, a pet, or a part of themselves, it's knowing that there are so many other beautiful things in the world to experience that often gets people through it. There's an overwhelming amount of joy to experience in the world. You'll lose the ability to experience some of it, but thankfully, there's so gosh darn much of it left to find! It's harder to find for some people than for others, but it's there waiting for everyone. I wish you luck in finding your happiness now and in the future!
Flyaway-Rainbow16 [OP] 1 points 3y ago
Thank you...
retrolental_morose 2 points 3y ago
I only have light, and went through a spell without it. It was hard, but to most people, "it's only light..."

I can't obviously speak to your exact situation, only to note that I'm very lucky to work with people who've lost, or are losing their vision. Seeing how they cope, the ways they find to manage, and the problems that they learn to address is huge, every day. I can tell if there's a gap in my curtains by sound quite often. And my dog actually complains at me if I forget to turn a light off. I'm not saying anything will replace what you have, but I am pretty sure that you'll adapt. And as others have said, there's a huge wellspring of support here.
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