r/Blind • u/WizardMonk007 • 2d ago
Question Going blind
I am going to be going functionally blind over the next year or so and my surgeons say there isn't anything they can realistically do to slow it down or prevent it.
What are the most valuable things I can learn or do while I still have sight in order to be better prepared for the inevitable?
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u/becca413g Bilateral Optic Neuropathy 2d ago
Biggest thing I think is learning to use a screen reader (I’d start with the one on your mobile phone). That opens up opportunities to self teach other blindness skills and seek support and learn from and connect to others.
I’d also focus on learning to use a long cane and cooking.
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u/WizardMonk007 2d ago
Thanks. I'm guessing with modern tech it isn't worth learning braille anymore?
I have started learning how to use voice on my Apple Macbook, but it is tough not to reach for the trackpad and I am self conscious about talking to my phone or computer around others. Guess that is another thing I'll just have to "get over it" about.
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u/zomgperry 2d ago
Braille is useful for some labeling, etc, but it’s less useful for folks who haven’t been using it since childhood. I’ve learned it twice as an adult and forgotten most of it.
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u/CosmicBunny97 2d ago
I learnt Grade 1 and 2 as an adult and I enjoy braille, but I don't enjoy how much effort it can be to connect my braille display so I don't practice as much as I should. I'm also much faster with audio, but I still enjoy reading braille
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u/becca413g Bilateral Optic Neuropathy 2d ago
I’d start on your phone, i found on Mac is harder to learn. You don’t need to talk to use voiceover (if your talking to you Mac have you confused voice control aimed at people with reduced mobility but good vision with voice over which is the screen reader fir blind people) and you can stick an earphone in for the voice output.
Braille is absolutely a useful skill and something I’ve really enjoyed learning and using since I lost some of my sight but I think things like being able to use your phone, learning to get around safely with a long cane and learning to meet your basic needs like being able to cook should take priority.
There’s so many skills you can learn to make life easier or more enjoyable and braille is definitely one of those.
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u/recklessly_zesty 2d ago
Absolutely still a use for braille! Especially if you are a reader, listening to audio is not the same. It is also a way to express yourself without speaking it out loud and can be helpful in maintaining/getting employment. At least get a basic sense of the system and the dots while you have vision to give a bit of ease in figuring it out, you could do the rest of the learning later if it is not a priority, as someone mentioned. You could just do it as a game in your free time for now the way people do to learn a language on duolingo. The app "BrailleAcademy" is a good place to start for someone sighted.
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u/best-unaccompanied 2d ago
There's still plenty of use for braille! Most people who learn as adults aren't going to be sitting down to read entire novels in braille (although there are exceptions), but even just learning the alphabet can have a lot of benefit, from being able to identify your spice jars to finding the right bathroom or elevator button.
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u/dandylover1 2d ago
You don't need to talk to things. You can just use a keyboard or a touchscreen. Personally, I prefer keyboards, but that's just me. But I never talk to anything, except Alexa on my Echo Dot and Flex.
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u/Few-Adeptness8046 2d ago
Look into organization who do your current hobbies as Blind groups, or how to do your hobbies blind.
One of the most maddening and depressing things for me was thinking I'd never watch movies again. I was depressed and angry for years for many reasons ofter losing my vision, then about 4 years later, I found out that the theater has accessibility devices that narrate movies, and I started going to movies 4 days a week.
This was great for my mental health. I've seen 247 films in the theater this year so far thanks to audio description.
There are tons of organizations that help blind people do all kinds of things like water skiing, bike riding, team sports, surfing, archery, skydiving, hiking, I've heard of organizations for all kinds of hobbies.
Try to see if your city has a local blind resource center.
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u/OppositeAshamed9087 2d ago
Learn braille, learn several screen readers (phone, computer, etc), look into the services that are available to you. Get O&M training. If you haven't already, apply for disability.
Learn how to adapt your environment. Find things you can do without sight. Find groups or prepare to move somewhere that has services / groups.
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u/agentofthesystem 2d ago
Start seeing a grief counsellor. Getting your head (back) in the game is more important than any single skill.
Beyond that, I echo what has been said by others here. Turn on VoiceOver on your phone and learn the gestures as a starting point. Look around your home and get rid of anything that uses a touch-screen that you can’t remotely control (e.g. from an app), because these things will be much adder to use when you can’t see them. Start adding tactile guides to your appliances (e.g. 3M’s Bump-Ons).Find a new home for your paper books.
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u/BoonOfTheWolf 2d ago
Contact your local rehab agency and start getting training now. You can get orientation and mobility training for learning how to travel, as well as independent living skills.
You can also learn how to use your tech with screen readers and such. The rehab agency would also be able to tell you what funding is available (but that may also be dependent on your eye report).
What country/state/province do you live in?
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u/WizardMonk007 2d ago
USA, Salt Lake City, Utah. I feel embarrassed and like an imposter since I am not blind yet. I can still mostly read and even drive for a few more months. And I don't want to offend truly blind people or their culture. (If they have a distinct culture like I know the deaf have.)
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u/zomgperry 2d ago
Don’t feel like an imposter. Most blind people have a little vision left, and many people here know what it’s like to face vision loss. Don’t beat yourself up. You’re one of us. Be kind to yourself.
The earlier you start learning how to use a white cane, the better. I started learning when I still didn’t “need” one (I did need it, there were times I could get by without it) and it’s the best thing I’ve ever done for myself. Get some blindness rehab as soon as you can. You’ll thank yourself later.
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u/SwimmingRush9639 2d ago
You’ve got my vote on that one. Then there’s the family learning about you adapting to your situation.
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u/BoonOfTheWolf 2d ago
Utah State Office of Rehabilitation
https://jobs.utah.gov/usor/dsbvi/
You should still give them a call, to find out what the requirements are for getting training. Many people do find getting some training earlier to be helpful, especially if they have something degenerative and they know their vision is getting worse.
A number of years ago, I used to know a client who would drive to the Braille lessons, and get cane training under simulation (blindfold). They had an aggressive form of RP.
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u/becca413g Bilateral Optic Neuropathy 2d ago
Throw yourself into learning stuff and getting ahead of things. Many people put off learning and feel like they are playing catch up and can become very isolated and limited while they learn the skills they need. Learning stuff early will smoothen out the transition. You’ve got an advanced warning so make the most of it!
While there’s definitely a culture I think it’s very different to Deaf culture and I doubt you have any issues as long as you’re polite and don’t put others down.
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u/SwimmingRush9639 2d ago
All I can tell you, is you’ve got lots to keep learning for probably life. I’m 56, I live in Australia, and I’m still doing all of those things.
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u/Dark_Lord_Mark Retinitis Pigmentosa 9h ago
I had a diagnosis where I was going to be blind in the near future. I reached out and got some help with low vision techniques and equipment and then found out sort of what the plan would be for when vision went out totally. When it did finally go out totally I called Voc Rehab and they were ready for me I got the ONM training that I needed and started learning the screen readers and stuff. It kind of happened suddenly but because I had gone in preemptively I was prepared and knew exactly what to ask for and they were ready for me. It worked out well and that horrible transition into blindness finally ended and was able to get on with my life without driving with white knuckles and tripping over stairs and pretending that I meant to do that kind of thing. As a fully blind person I don't have to pretend that I'm not Blind anymore. And of course you don't have to do that either but I think it's just natural
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u/unicorndust969 2d ago
Spend time looking at things you will miss seeing, make some memories. For real.
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u/New_Elephant127 2d ago
If you are going to lose your site, consider learning how to use your phone without it. Turn on screen curtain. It essentially turns off the display while you can still use it.
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u/Ok-Style-8059 2d ago
A list of things
Reach out to voc rehab
Get bump dots to label things like the ticker that you put the washer and dryer on. or the labels on the stove like what's medium, high and low and the degrees on the oven unless you have electric
if you use glassware, you might want to start using paper good to avoid dropping something on the floor, and it shattering
get acquainted with voiceover on your device.
Take ONM lessons.
You can always get a dog after you get familiar with your cane
I don't typically use audio description, but you may want to start using it from time to time so you can get used to it being on when you're watching TV
When you make your appointment with rehabilitation services Ask them about fusion, jaws and zoomtext this is software that can be used on your computer.
You can learn braille but with technology it's not really needed. I would still learn basic grade one just so you can label things in your kitchen or whatever it is that you use on a daily basis. Also to identify which restroom that you are going into or room you are going to in an Office building.
Get some Ray-Ban meta glasses. Those are so helpful with identifying objects and things you typically wouldn't be able to read by yourself. Also you can use Be My Eyes which is a volunteer service that helps people find things.
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u/dandylover1 2d ago
I agree with all of that, but you don't need to wait for JAWS and/or Zoom Text. You can try NVDA, which is free and works on all Windows machines. It is a screen reader (and now, magnifier as well) that you can use for reading documents, the Internet, etc. Basically, anything non-visual that you can do on a computer, it can read. It can even extract text from images.
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u/WizardMonk007 2d ago
Thank you for all your suggestions. Perhaps dealing with my grief really is the first step. I reached out, which is good, right? But I am feeling overwhelmed. Again, thank you everyone.
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u/Difficult_Army_9570 2d ago
If you have a filing cabinet with paperwork and documents, start going through through them get the organized get rid of the ones you don’t need, etc.
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u/blind_throw 2d ago
What’s your condition?
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u/WizardMonk007 2d ago
TL;DR Multiple untreatable conditions. Fuchs, failed cataract IOLs, brain issue. Untreatable because of advanced prostate cancer.
Long version:
I am 63 and retired. I had cataract surgery three years ago. At that time they diagnosed me with Fuch's Dystrophy. No problem, I thought, I'll just get a transplant in many years when I eventually need it.But I had problems with the cataract surgery. My vision was materially worse and got worse as time went on. I figured it was just the Fuch's getting worse.
It got bad enough that I had trouble reading my phone and using my laptop. So I scheduled a meeting with the best cornea surgeon in the area to see what my options were.
They did a bunch of measurements and tests and said I would would need four more surgeries just to keep the vision I have. Two surgeries to replace my cataract lenses and two more for corneal transplants.
However, he is the best transplant surgeon in the area but he said my case is too complicated for him and he would have to refer me one of the best surgeons in the world. And he had serious doubts that after those four surgeries I would have better vision.
Forgot to mention I have stage 4b advanced prostate cancer and the medicines that keep me alive would make the surgeries very dangerous. I would be likely be at very high risk of infection and rejection.
And, he said my Fuch's is only moderate. Something is wrong beyond my eyes. He was willing to make the referral but his honest opinion was the risks outweigh the benefits.
So my vision is quickly deteriorating. There are days I cannot read at all. Magnifying doesn't help much because the letters are offset.
I am retired, but I have a large AI homelab and my AI agents can help me with some things, but not with the "real world".
At the current rate of deterioration I will probably be completely functionally blind in the next year. My doc can't tell me how long or what vision will remain since I have multiple issues.
My Fuch's Dystrophy will get worse and even if that somehow got cured my cataract lenses and open capsule are not functioning correctly. And if somehow that was fixed there still seems to be a problem with my brain and vision.
I left with no hope. One of the last things the doc said was that sometimes the toughest part is accepting that this is the best it will ever be.
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u/Callouscals81 2d ago
VoiceOver on your iPhone. If you have an Android it’s called Talkback. I was an android user when I lost my vision but I found talkback to not be as in depth as voiceover. Check out U2 for some tutorials while you still have some sight. I still find VoiceOver on Mac to be more confusing but I’m getting better and there’s plenty of in-depth tutorials on YouTube for that as well. Check out the YouTube channel “The Accessible Learning Lounge” and “The Blind Life”. Also, start following some blind creators on TikTok. There’s a pretty large community of blind and low vision folks on TikTok for tips, encouragement, general education, etc.
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u/Kitchen-Strawberry25 Trauma 2d ago
Get your digital life in order. Back up and manage files and accounts and passwords.
This goes for your own paper based life too. Bills, records etc. make sure you got it all organized and backed up so you are able to find these things as your vision worsens.
Once you get attached to a state agency to help you pay for assistance tools and devices, they can help pay for software like Fusion or SoomText (if you have some useable sight left, aka low vision or some visual acuity of some kind) or JAWS (if you don’t have too much vision left to help, or you like controlling your computer with a keyboard than trying to fiddle with the mouse)
Get acquainted now with your phone’s voice over capabilities and how it functions. When my vision was becoming worse it was handy to see how things worked first.
Stuff like that, organize your home, kitchen etc. Be mindful of breakable things that will be harder or impossible to see. I can’t see cups or breakable things at all so I’ve put them far away or not easily reachable by me. Or at least in spots I know to avoid.
You’re definitely going to want orientation and mobility training. That local blind agency I mentioned earlier can help with that.
If I think of more, I’ll make another comment. Feel free to ask me things too by responding to this or a DM, whichever works for you.
I’ve gone from sighted to blind in one eye to low vision to light perception only to temporarily fully blind to kinda blind kinda not, it’s complicated. Needless to say, I’ve run the gamet of vision loss over the years so I’ll try my best to help anyone that needs it.