Blind and Visually Impaired Community
↑
8
↓
How/Where Can I Learn to be Functional & Independent Once My Sight is Completely Gone? (self.Blind)
submitted by coffeeorigami
Hello Everyone,
Recently, I had my right eye surgically removed. In a nutshell, I have a very rare autoimmune disorder that affects my eyes. I’ve had brief bouts of blindness (lasting from several weeks to one year) periodically throughout my life. In the past, my sight was restored via surgery, but after the 18th eye surgery my right eye collapsed and had to be removed. It’s only been six weeks since I lost my right eye, and now I can barely see out of my left. Surgery is no longer an option - my left eye is too fragile. My disease is so advanced that there are only two other treatments I can try, but the odds are not good. My doctor had told me to be prepared, although not all hope is lost - not yet, anyways.
I went to my local state’s office for disability services looking for information and training in how to operate a computer, navigate with a cane, learn Braille, and so on - but they were so unhelpful as to be idiotic and borderline insulting. That said, I need to learn these thins - it is a necessity now.
Tomorrow I’m going to email the American Foundation for the Blind and Gallaudet University in search of resources and support. My hope is to find someone local who can teach me these things - it doesn’t have to be free, my parents are very supportive and (if it applies) I have excellent insurance.
I hope you don’t mind me asking, but would you guys be willing to share any information on resources, tips, learning materials, software, support groups, helpful mobile devices’ apps - anything and everything would be appreciated. I know that it’s not the end of the world and that many people deal with far worse circumstances, but I find myself to be very scared right now. I know it’s not appropriate but I feel like I’m grieving - I’ve cried a lot today (sorry if that’s TMI). Any help or advice you could offer would be greatly appreciated.
Thank You,
CoffeeOrigami
retrolental_morose 2 points 4y ago
I'm in the UK, so any resources I could point you to would not be physical or near-to-hand.
But I just wanted to chime in with reassurance: losing any amount of vision is still a loss, and greef is perfectly normal - I work teaching young people who've lost some, so I see this on a regular basis, sad to say.
Your perspective and determination are great to see. Blind people all over the world do great things, and I have never met someone for whom it's life-limiting to any great degree. I have a happy young family, a job that I think matters and am very lucky to know lots of people who are both visually-impaired and brilliant.
Please do PM if ever you feel the need. Cudos for posting.
Good luck. You are not helpless. You will find your way.
But I just wanted to chime in with reassurance: losing any amount of vision is still a loss, and greef is perfectly normal - I work teaching young people who've lost some, so I see this on a regular basis, sad to say.
Your perspective and determination are great to see. Blind people all over the world do great things, and I have never met someone for whom it's life-limiting to any great degree. I have a happy young family, a job that I think matters and am very lucky to know lots of people who are both visually-impaired and brilliant.
Please do PM if ever you feel the need. Cudos for posting.
Good luck. You are not helpless. You will find your way.
coffeeorigami [OP] 1 points 4y ago
Thank you so much for your kind and encouraging reply :) I live in the US, in the state of Tennessee.
KrolPolski 1 points 4y ago
Your state should have a training and adjustment school for the newly blind. There is one in Utah. I know there is one in Austin, TX called Criss Cole. The National Federation of the Blind also runs their own network of training centers that could meet your needs.
In addition I recommend going to your local NFB chapter and meeting other people who have been there and are more intimately familiar with the local resources. The American Council of the Blind might be able to help to; in my area the NFB is far more active.
If you would like to PM me your location and contact information I could have someone in your area reach out to you.
I am not a blindness professional, just a guy with RP that has already been through a full time training program.
In addition I recommend going to your local NFB chapter and meeting other people who have been there and are more intimately familiar with the local resources. The American Council of the Blind might be able to help to; in my area the NFB is far more active.
If you would like to PM me your location and contact information I could have someone in your area reach out to you.
I am not a blindness professional, just a guy with RP that has already been through a full time training program.
coffeeorigami [OP] 1 points 4y ago
Thank you! I appreciate the good advice and I’ll PM you shortly.
KrolPolski 1 points 4y ago
I would add that my contact with the NFB made a massive difference in terms of helping me with emotional adjustment to my situation.
KarebearMom 1 points 4y ago
I'm in Louisiana, in the US. We have a few centers for the blind that teach daily skills of adult living. I would look for something similar in your state. Usually those centers are residential.
coffeeorigami [OP] 2 points 4y ago
Thank you for the recommendation. It’s always good to hear from a fellow southerner (I’m in TN). I look into those centers. I’m job hunting now, as I spent most of 2018 having (and recovering) from several eye surgeries. I’ll look into those centers. Thanks again!
BrailleNomad 1 points 4y ago
Hi OP-
If you want to let me know what state you are in, I can point you to some resources to help you out. You can PM me if you’d rather. I am a teacher of the visually impaired, so I am always glad to answer any questions you have.
If you want to let me know what state you are in, I can point you to some resources to help you out. You can PM me if you’d rather. I am a teacher of the visually impaired, so I am always glad to answer any questions you have.
coffeeorigami [OP] 3 points 4y ago
Thank you so much. I’m sorry for the lateness of my reply - I lost my vision last week and it’s only been in the last couple of days that it has returned. I love in East TN, in Knoxville. Thank you so much for the help.
KillerLag 1 points 4y ago
Just to check, Gallaudet University is for the deaf and hard of hearing. Do you have a condition that effects both (such as Usher's syndrome)?
From your history, you seem to be in the US, although not clear if you are in Florida still or not. (I'm in Canada, so our health care and rehabilitation is a bit different). I believe you should be able to contact your state rehabilitation agency regarding getting Orientation and Mobility training, as well as Vision Rehabilitation training (I'm not sure of the exact name in the US, in Canada we call it Independent Living Skills, or ILS).
Hadley school also does some distance education (https://www.hadley.edu/Findacourse.asp), including Braille and technology. I haven't used their services before, so I can't speak about my personal experience, but many of my coworkers says they are good.
Getting training while you have some vision does help make things a bit easier. Do you have an iPhone? The iPhone has adaptive technology built into it, and you can learn the basics off the internet pretty fast.
For software for PC, check into a screen reader called NVDA. For Mac, it would be VoiceOver (as well as on their mobile devices).
If you have any other questions, feel free to ask away. If you don't want to do it in a public forum, you can also PM me. Hopefully someone with a better understanding of the US rehabilitation system could give you more specific advice. Good luck! Hope things work out!
From your history, you seem to be in the US, although not clear if you are in Florida still or not. (I'm in Canada, so our health care and rehabilitation is a bit different). I believe you should be able to contact your state rehabilitation agency regarding getting Orientation and Mobility training, as well as Vision Rehabilitation training (I'm not sure of the exact name in the US, in Canada we call it Independent Living Skills, or ILS).
Hadley school also does some distance education (https://www.hadley.edu/Findacourse.asp), including Braille and technology. I haven't used their services before, so I can't speak about my personal experience, but many of my coworkers says they are good.
Getting training while you have some vision does help make things a bit easier. Do you have an iPhone? The iPhone has adaptive technology built into it, and you can learn the basics off the internet pretty fast.
For software for PC, check into a screen reader called NVDA. For Mac, it would be VoiceOver (as well as on their mobile devices).
If you have any other questions, feel free to ask away. If you don't want to do it in a public forum, you can also PM me. Hopefully someone with a better understanding of the US rehabilitation system could give you more specific advice. Good luck! Hope things work out!
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.