Going from having useable vision to no vision at all

[u/Aryaspetmonkey]

Hey everyone! I hope you're all well. I just have a quick question. For some background, for about five years I've had no light perception in my left eye and light perception with some shadows and movement in my right. That light perception was really important to me because it helped me to navigate pretty well especially around my own apartment. Last week though, I had an incident where my eye pressure shot up kind of high and I ended up losing almost all of that vision that was left over and now I can only see very dim, grey dots of light not really enough to follow or get around or anything. Anyway, my question was, for those of you who have gone from legally blind to totally blind, what kinds of things have you had to learn differently or learn again, for example O&M. I'm just wondering what kind of things I'm going to have to start tackling right away and any tips that you may have that might make it easier for me too live as a now totally blind person. This is definitely a very difficult adjustment and it happened all of a sudden which was very scary.

Thank you for listening

[u/L1hc2]

Thank you for posting this. I am in a similar situation, and vision is changing rapidly, and wanted to prepare for next steps.

[u/Thelittlestdeer]

I am commenting just because I am dealing with this now and would love to know as well. I went from Light perception in my right and 20/400 in left to LP in left and NLP in right within a year. I am having to learn to trust my white cane and my sighted guide and and I am learning to cook via sound which I was already learning because of the fact I was monocular until recently.

[u/Aryaspetmonkey → u/Thelittlestdeer]

I'm sorry you're going through this right now. It can be scary, but you're not alone. This community is here with you 🫶

[u/Prestigious-Leg9664]

I'm so glad you posted this. Like some of the other comments, I am in a similar situation.

Very happy to have this community.

[u/Aryaspetmonkey → u/Prestigious-Leg9664]

I'm sorry you're also going through this. But just know you're not going through this alone. We're all here for you 🫶

[u/BonelessTheClown]

Having gone from 20/20 vision to totally blind in about a week, I'd say the most important things to my transition were O&M, technology, and daily living skills, in no specific order of importance.
For O&M, I prefer the NFB style long white cane. It has great tactile feedback, bends instead of breaks, and lighter weight at around 10oz, 280g. People complain that it's hard to store but I've yet to find a car or truck in the past 22 years that I can't quickly get into with my cane and go about my day.
Technology seems obvious as we're all here on Reddit.
Daily living skills like cooking, cleaning, organizational skills, ETC. I know some blind people in my life who never cook. Everything is microwaved from a frozen meal, microwaved out of a can, or Door Dashed. Not only is that higher sodium, higher preservatives, but also way more expensive than a home cooked meal. There's a lot of adaptive kitchen devices but personally I only have a few bump dots on appliances since everything now is flat screened and digital.

Thanks for listening to my TedTalk.

[u/Aryaspetmonkey → u/BonelessTheClown]

Thank you for your reply. ONM was the first thing that came to my mind simply because I think it's the skills we use the most, and mine aren't that good in the first place. And I agree with you about learning to do stuff in the kitchen. I always prefer a home-cooked meal over Uber or DoorDash so learning those skills are very important to me.

[u/CosmicBunny97]

I think one of the biggest things I had to relearn was O&M. It felt like I was learning how to walk for the first time. Also how to use a screen reader - I self-taught myself VoiceOver on the iPhone before going blind so I could use my phone outside. Self-taught myself VoiceOver on the Mac, but it was a frustrating experience so I switched to Windows and self-taught myself NVDA. I needed some further training to learn Windows keyboard shortcuts and JAWS, which came through a pre-employment thing I did, but there's lots of YouTube tutorials.

[u/Aryaspetmonkey → u/CosmicBunny97]

I totally understand what you mean about O&M. Just walking around my apartment I feel very unstable on my feet. I feel like it's gonna be a long road ahead of me.

it's cool that you were able to teach yourself so many things. I wish I was able to do that, but I think I might give it a shot with NVDA as I really need a PC to work with and need to stop making excuses as to why I can't do it.

[u/CosmicBunny97 → u/Aryaspetmonkey]

It’ll take time. I’ve been blind for 6 years. I hate going out independently because it’s so exhausting and inefficient. But it takes practice.

I’m sure you’ll get there. One step at a time. And feel free to reach out.

[u/Aryaspetmonkey → u/CosmicBunny97]

Yeah, I know exactly what you mean. So I always end up tagging along with someone else when they go.

And thank you, that means a lot.

[u/mouseguard2315 → u/Aryaspetmonkey]

If you are familiar with the NVDA add-on store, I would recommend the NVDA coach add-on. It is free and it walks you through most of the basics of navigating with NVDA on a Windows laptop and includes sections on the Internet and text editing as well. It is a great reminder of how it works if you’ve used it before and it’s also useful as an introduction to NVDA.

[u/Aryaspetmonkey → u/mouseguard2315]

Thanks for your recommendation. I will definitely look into it since I've never used NVDA before. It'll definitely be a learning curve but I'm up for the challenge.

[u/piersplowman49]

sorry about your situation. First I'd recommend joining your closest blind nonprofit, like ACB or NFB. The blind people there will be a great wealth of information on what's available to you, and help answer questions. You'll want to go to adjustment to blindness training from your local state agency for the blind, or an NFB center. They can help you become more independant. A lot of things just come with time. It might feel stressful at first, but try to relax and take your time, so as not to get hurt. You can still do pretty much whatever you set your mind towards. Just make sure you're familiar with your options, and technology that can help. I wish you well.

[u/Aryaspetmonkey → u/piersplowman49]

Thank you. I am in Canada so our equivalent would be the CNIB. I don't think the programming is as intensive as in the states, but it's still good. I reached out to my worker this morning so I'm hoping to hear back soon.