Blind and Visually Impaired Community
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Hi everyone! I’m newly VI at 29 (self.Blind)
submitted by Snoo_85465
Snoo_85465 [OP] 15 points 1y ago
Lol sorry don’t know how to use screens ever since this happened. But anyway, hi everyone. I had a retinal detachment at 29. Random, no cause. This has been such an intense and weird thing to process for me and it happened so quickly. The other day I fell off a curb because I’m blinded in sunlight conditions ever since I had a laser treatment after my scleral buckle surgery didn’t fix everything. But anyway I’m so photosensitive that I got overwhelmed by the sun and I fell off a curb on Wednesday and it’s been really hurting my feelings and making me feel bad to be in this situation. And I’m starting to sign up for services here in my city and I’m going to learn how to use the white cane and everyone in my life is encouraging me and supporting me but I am grieving these changes a lot. And I also feel vulnerable in this position where I need a cane, I don’t know how to use it, and I’m very new to being VI. Anyway just wanted to say hello and thank you all
gabby_skii 5 points 1y ago
Hello and me too,
I received my stargardt disease diagnosis in June of last year. In the span of 6 months I've gone from decent vision to 6/30 (don't know what the measures are like in other countries, but lets just say its not great). Its a really anxious and terrifying process, you almost don't have time to grasp what's even happening. Its ok to admit that the situation suck, I myself struggle with day to day vision changes and I doubt even the most uplifting person can remain positive in our situation, but I'm counting on you to keep moving forward.
I received my stargardt disease diagnosis in June of last year. In the span of 6 months I've gone from decent vision to 6/30 (don't know what the measures are like in other countries, but lets just say its not great). Its a really anxious and terrifying process, you almost don't have time to grasp what's even happening. Its ok to admit that the situation suck, I myself struggle with day to day vision changes and I doubt even the most uplifting person can remain positive in our situation, but I'm counting on you to keep moving forward.
Snoo_85465 [OP] 3 points 1y ago
Wow I am so sorry you are going through this as well. It is a unique and sometimes terrifying journey. I also struggle with day to day vision changes. I guess I didn’t realize that the experience of vision loss in my case would be so shimmery and ever changing. I agree that positivity is the key and thank you so much for your answer
KillerLag 8 points 1y ago
I'm an Orientation and Mobility Specialist, so I help teach people how to use a cane. It is definitely a useful tool to prevent falling off curbs. And some people do feel vulnerable with it... by design, it is very visible so others know what it is. I usually compare it to a pair of shoes... you don't need a pair of shoes to go walking outside. But the shoes protect you from broken glass, they let you want further, and you can do more. It is a tool to help regain your independence.
If you have any questions, feel free to post on here. People on here are very helpful.
If you have any questions, feel free to post on here. People on here are very helpful.
Snoo_85465 [OP] 2 points 1y ago
Hi! Wow, thank you so much for teaching O+M. I didn’t know about O+M until this week when I went to goalball practice for the first time and unfortunately fell off a curb due to day blindness. Luckily I was in the right place and the coordinator told me about the cane and I was really upset by the idea for the first several days but the fall scared me enough that now I am excited to use it.
I do have some questions:
My low vision assessment isn’t for another month but I have some mobility issues now. My friend with RP helped recommend a telescoping cane for me so I ordered one online. Everything online says how you can’t learn to use your cane alone because there’s s lot of technique. Even if it comes in the mail I shouldn’t try to use it until I see an O+M specialist? Or is it okay to try to practice? I watched some YouTube videos. The fall the other day really hurt my confidence (and also my ankle, to the point where I am worried it might be broken) and so I want to use the cane now.
Also I think I will be an only sometimes cane user and I’m not sure how to explain that to people. I was thinking of getting tiny cards printed up explaining day blindness to hand to people because I am introverted and don’t want to talk to strangers about something that is so new for me. I realize my O+M specialist will help me through all of these but idk when my training will actually start since I only started applying for services this Thursday.
Thank you so much!
I do have some questions:
My low vision assessment isn’t for another month but I have some mobility issues now. My friend with RP helped recommend a telescoping cane for me so I ordered one online. Everything online says how you can’t learn to use your cane alone because there’s s lot of technique. Even if it comes in the mail I shouldn’t try to use it until I see an O+M specialist? Or is it okay to try to practice? I watched some YouTube videos. The fall the other day really hurt my confidence (and also my ankle, to the point where I am worried it might be broken) and so I want to use the cane now.
Also I think I will be an only sometimes cane user and I’m not sure how to explain that to people. I was thinking of getting tiny cards printed up explaining day blindness to hand to people because I am introverted and don’t want to talk to strangers about something that is so new for me. I realize my O+M specialist will help me through all of these but idk when my training will actually start since I only started applying for services this Thursday.
Thank you so much!
KillerLag 3 points 1y ago
It is fairly common that something happens before people seem O&M training. About half my clients realize they need training because they fell off a step/curb or walked into something.
Part of the assessment is to check for the height of the cane. As well, depending on where you are, there could be government coverage for the cost of the cane. Some people do buy their own and use it for a bit before formal training occurs.
Using the cane in some circumstances happens as well. Depending on eye conditions, some people see better in some circumstances. For example, you mentioned your friend with RP. RP often starts with night blindness, so many of my clients use the cane during low light conditions, unless their vision gets worse.
Part of the assessment is to check for the height of the cane. As well, depending on where you are, there could be government coverage for the cost of the cane. Some people do buy their own and use it for a bit before formal training occurs.
Using the cane in some circumstances happens as well. Depending on eye conditions, some people see better in some circumstances. For example, you mentioned your friend with RP. RP often starts with night blindness, so many of my clients use the cane during low light conditions, unless their vision gets worse.
mavedenyz 6 points 1y ago
As someone who lost their vision in the same manner and at the same age, I can empathize. It has been almost 2 years since I lost my vision, but I will tell you that it will be OK and in time you will make peace with your situation.
I found training especially Owen M and assistive technology to be incredibly transformative. I hope you do as well. Please feel free to reach out if you ever need anyone to talk to
I wish you all the best! Also, make sure to give your white cane a bad ass name. Mine isCC short for candycane 😆 she’s been my partner in crime!
I found training especially Owen M and assistive technology to be incredibly transformative. I hope you do as well. Please feel free to reach out if you ever need anyone to talk to
I wish you all the best! Also, make sure to give your white cane a bad ass name. Mine isCC short for candycane 😆 she’s been my partner in crime!
Snoo_85465 [OP] 2 points 1y ago
Wow, I’m so sorry you also went through this, but it is amazing to hear that you found o and m transformative. I think I will too. I want to feel confident again in my city and in public. It is a huge relief to hear that it does get better and I really appreciate the insights from someone who has been there.
mavedenyz 2 points 1y ago
O&M will definitely give you the confidence to move around comfortably again.
And, I went through your comment history on this sub Reddit and read that you are from San Francisco. Hello fellow Californian! My advice would be to obtain training and services through your local Department of rehabilitation blind field services. If anything, I am pretty sure that they will link you with the lighthouse for the blind and visually impaired who will be providing training and services. I suggest you reach out to them while you also apply to the department of rehabilitation.
Hope this helps 😊
And, I went through your comment history on this sub Reddit and read that you are from San Francisco. Hello fellow Californian! My advice would be to obtain training and services through your local Department of rehabilitation blind field services. If anything, I am pretty sure that they will link you with the lighthouse for the blind and visually impaired who will be providing training and services. I suggest you reach out to them while you also apply to the department of rehabilitation.
Hope this helps 😊
KevanGP 5 points 1y ago
From someone who has been totally blind all my life, don't give up. For anyone, this is definitely a big change. But blindness shouldn't hold you back in life. If you live in the U.S., contact your state agency for the blind. Every state has a Division for Blind Services, a Rehab Services for the Blind, something run by the Government to assist blind people with adjusting to the change, also helping those who have been blind all their lives like me. If you're outside of the U.S., chances are your country's government has something to assist you. Also, unrelated to the government organizations is the National Association of the Blind (NFB) based in the United States, an invaluable organization which promotes equal access for blind and visually impaired. Find out more about the NFB at https://www.nfb.org. I suggest you either start with your government agency or the NFB. If you have any more questions, inbox me.
Snoo_85465 [OP] 4 points 1y ago
Thank you so much! This is incredibly helpful. I actually did not know about the department of rehabilitation or its existence until now but that’s exactly what I need. And I’m
Also going to check out National Federation for the Blind. Thank you!
Also going to check out National Federation for the Blind. Thank you!
OldManOnFire 5 points 1y ago
Hey Snoo! What's new?
You already know how to use a white cane, you just haven't realized it yet.
Ever been in a pitch black room and put your hand out in front of you to feel for the wall as you walk toward it? Of course you have, it's human instinct. Using a cane is just like that except you're feeling with a cane instead of with your hand. You're going to find using your cane is just as natural and instinctive. Don't worry about it. The hardest part is learning to deal with the self conscious feelings that come with using it.
Welcome to the community.
You already know how to use a white cane, you just haven't realized it yet.
Ever been in a pitch black room and put your hand out in front of you to feel for the wall as you walk toward it? Of course you have, it's human instinct. Using a cane is just like that except you're feeling with a cane instead of with your hand. You're going to find using your cane is just as natural and instinctive. Don't worry about it. The hardest part is learning to deal with the self conscious feelings that come with using it.
Welcome to the community.
Snoo_85465 [OP] 4 points 1y ago
Your message really warmed my heart. Thank you so much!! This made me feel a lot better about learning and less intimidated.
And honestly, I am glad to be here. The blind and VI community has been some of the nicest people I’ve ever met and while the world is harder for me now I see so many examples of blind/VI people succeeding with the right supports so I’m actually excited for my low vision assessment and to start learning tools. But also nervous, of course. Thank you for your response and have a great day.
And honestly, I am glad to be here. The blind and VI community has been some of the nicest people I’ve ever met and while the world is harder for me now I see so many examples of blind/VI people succeeding with the right supports so I’m actually excited for my low vision assessment and to start learning tools. But also nervous, of course. Thank you for your response and have a great day.
TechnicalPragmatist 1 points 1y ago
Except using a cane really isn’t that simple though that’s a really false view.
TechnicalPragmatist 1 points 1y ago
Using a cane isn’t quite that simple but okay….
TechnicalPragmatist 3 points 1y ago
Sometimes being ashamed is not the way forward. And accepting it is the way forward. It’s not as if you caused it or have some guilt. Be proud or confident in who you are. Sometimes reality just is and not what we want or expect.
fhifck 1 points 1y ago
Thank you so much for saying that. Honestly since I made this post I learned so many blindness skills and gained a lot of self acceptance. I lost enough vision that I have Charles bonnet syndrome now. Understanding there’s a name for it helps me be less upset about it. And I got my first white cane. I thought I would feel embarrassed to be seen with it but the cane is true liberation and happiness. I have been going around by myself with it. The first time I used it I could not stop smiling because I had forgotten how anxious I’d become about walking since losing my vision. Thank you to you and everyone else who consoled me at the start of my journey ❤️
TechnicalPragmatist 1 points 1y ago
Since you made this post you’re not the op are you? Thats interesting.
And not a problem.
That’s good you have learnt blindness skills and acceptance that’s a good start and glad you have.
That’s good you have confidence with your cane and not embarrassment or afraid to be judged.
And not a problem.
That’s good you have learnt blindness skills and acceptance that’s a good start and glad you have.
That’s good you have confidence with your cane and not embarrassment or afraid to be judged.
fhifck 1 points 1y ago
Hello! I have multiple Reddit accounts. Before I went blind I was a weird privacy minded programmer and that part of my personality did not change, fortunately! So yes, I am OP posting from an alt. Thanks so much for the encouragement. It’s been a big adjustment. I’m getting my other eye checked tomorrow because that one might be detaching. Everything I worried about already happened though (I broke my ankle because I missed a curb and now I use a cane). So I can handle the fellow eye detaching too if that is what’s happening. Do you have advice for coping with other people having strong reactions to my cane? Sometimes the homeless men in my city want to know if I am really blind or faking. It feels really cruel and a bit dangerous for me when they do this. Any advice would be appreciated!
TechnicalPragmatist 2 points 1y ago
Ah, that makes sense I just got confused. And I am like what do you have to op why are you replying as the op? Sorry I got confused.
I did too for my own reasons now this one only. But that makes sense. Blindness doesn’t change us it’s just something we have to deal with we’re all just individuals. So hopefully no your personality shouldn’t shift or change drastically. If you give personality tests to everyone here or big five or whatever you’ll find just as many and just as many variations. Blind isn’t a personality and it shouldn’t shape us. But that’s interesting for sure.
Well sorry to hear that you are going through all that, you’ll make it.
Are their reactions really that important to you. What if they are judging you. So oh well if it’s a homeless guy you’ll never see him again. Think about it this way so what? People judge people for all sorts of things. You’re this race you must be blank. You’re tall you must be blank. You’re asian so you must be blank. You’re a geek you must be blank. If it’s someone off the streets ignore it and move on? And try to think of other things. You’ll never see them again. Don’t let yourself be self-conscious. I know you can’t help it, but know the cane will help you. So that’s the important things. If they judge you as a faker that’s their problem and not yours. Are you fakeing it? Just a stupid fraud? Okay no? Great believe in yourself have a bit of confidence move on. Tell yourself it’s okay. It ultimately keeps me safe. I know I am not defrauding people and people are just cruel out there. It’s their problem not yours. I mean if you’re 100% faking it, which I am not saying you are, yes. Feel like a phony, be ashamed of yourself, but in your case why should you?
Does this make sense?
I did too for my own reasons now this one only. But that makes sense. Blindness doesn’t change us it’s just something we have to deal with we’re all just individuals. So hopefully no your personality shouldn’t shift or change drastically. If you give personality tests to everyone here or big five or whatever you’ll find just as many and just as many variations. Blind isn’t a personality and it shouldn’t shape us. But that’s interesting for sure.
Well sorry to hear that you are going through all that, you’ll make it.
Are their reactions really that important to you. What if they are judging you. So oh well if it’s a homeless guy you’ll never see him again. Think about it this way so what? People judge people for all sorts of things. You’re this race you must be blank. You’re tall you must be blank. You’re asian so you must be blank. You’re a geek you must be blank. If it’s someone off the streets ignore it and move on? And try to think of other things. You’ll never see them again. Don’t let yourself be self-conscious. I know you can’t help it, but know the cane will help you. So that’s the important things. If they judge you as a faker that’s their problem and not yours. Are you fakeing it? Just a stupid fraud? Okay no? Great believe in yourself have a bit of confidence move on. Tell yourself it’s okay. It ultimately keeps me safe. I know I am not defrauding people and people are just cruel out there. It’s their problem not yours. I mean if you’re 100% faking it, which I am not saying you are, yes. Feel like a phony, be ashamed of yourself, but in your case why should you?
Does this make sense?
rumster 2 points 1y ago
can I ask you a question? Was it just random?
Snoo_85465 [OP] 2 points 1y ago
Yes it was just random
[deleted] 1 points 1y ago
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