Blind and Visually Impaired Community
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I’m going blind and am not sure how to adapt to the lifestyle. (self.Blind)
submitted by NeroTheGlowFox
So for a little backstory, I was born with congenital glaucoma. My vision has always bothered me when I was younger, but according to most of my teachers, it wasn’t affecting my academic performance, so I didn’t really get much done about it for a while besides having glasses. I got a few laser eye surgeries here and there, but they never really did anything. As I got older I noticed that I really couldn’t see much out of my right eye. I could see someone holding up fingers, or that the sky was blue, but I couldn’t read anything out of it because the vision was so bad. I was just given a stronger prescription.
Fast forward 13 or so years, I’m blind completely out of my right eye now, and the vision in my left is deteriorating. Most mornings when I wake up, my vision gets extremely cloudy and my eyes just won’t focus on anything. They also are very teary and burn quite badly, along with really strong light sensitivity. I keep a journal I write in when I wake up, describing how bad everything is, what time I woke up and then when it eventually does, I write when my vision clears up. That usually takes 5-6 hours on average.
Because of this, I cannot work. I am not considered legally blind (20/150 out of 20/200 best corrected) but I can’t drive or get my license. I have tried applying for disability but because they don’t consider me blind enough, my appeal was denied. I’ve filed a hearing, but lord knows how long that will take to go through.
Now, though I haven’t been able to see out of my right eye pretty much my whole life, the vision in my left is not completely gone when my eyes are cleared up. I haven’t really had the chance to start adapting to living life blind, as the cloud vision situation has really only recently started. I’ll admit I spent a lot of time sulking and being depressed when it finally hit me that I was rapidly losing my sight.
But now I am out of that, and am ready to stop feeling sorry for myself. My question here I suppose is how do I go about learning to adapt to living this lifestyle? I’ve already looked into Braille and walking stick classes, but is there something else I should consider?
Fast forward 13 or so years, I’m blind completely out of my right eye now, and the vision in my left is deteriorating. Most mornings when I wake up, my vision gets extremely cloudy and my eyes just won’t focus on anything. They also are very teary and burn quite badly, along with really strong light sensitivity. I keep a journal I write in when I wake up, describing how bad everything is, what time I woke up and then when it eventually does, I write when my vision clears up. That usually takes 5-6 hours on average.
Because of this, I cannot work. I am not considered legally blind (20/150 out of 20/200 best corrected) but I can’t drive or get my license. I have tried applying for disability but because they don’t consider me blind enough, my appeal was denied. I’ve filed a hearing, but lord knows how long that will take to go through.
Now, though I haven’t been able to see out of my right eye pretty much my whole life, the vision in my left is not completely gone when my eyes are cleared up. I haven’t really had the chance to start adapting to living life blind, as the cloud vision situation has really only recently started. I’ll admit I spent a lot of time sulking and being depressed when it finally hit me that I was rapidly losing my sight.
But now I am out of that, and am ready to stop feeling sorry for myself. My question here I suppose is how do I go about learning to adapt to living this lifestyle? I’ve already looked into Braille and walking stick classes, but is there something else I should consider?
Sommiel 7 points 4y ago
>I have tried applying for disability but because they don’t consider me blind enough, my appeal was denied.
They always deny the first time. It's a thing.
Are you in the US? Here we have State Department of Rehab for every state. You need to take your medical documentation to them, don't worry, they will fill out the forms for you.
Call them to see what days they do intake.
DOR will get you technology training, and the things you need to get a job. They will actually help with that as well.
They can also hook you up with the closest blind center and they will give you the training as well as life training classes like mobility and orientation. When it starts, they will often come to you and meet you for cane training.
Most cities also have training for riding the bus and taking the dial a ride, if you call them. This is a service that they offer for all disabled persons. My bus pass is free through that service program.
I went through all of this, and after several years without any hope I am doing pretty well now. I have a job that I like, and DOR kicked in to make sure I had the equipment that I needed to do the job.
The first two years I was going through this, I was suicidal. I had the oxy stash and I just knew that the day would come when I would just know it was time.
As I met with other blind people and got into the training, it really lifted my spirits. I am pretty tough now, and I know I can overcome anything. They will also probably have a support group at your local center, and I highly encourage you to attend. You are not the only person going through this. We have your back.
They always deny the first time. It's a thing.
Are you in the US? Here we have State Department of Rehab for every state. You need to take your medical documentation to them, don't worry, they will fill out the forms for you.
Call them to see what days they do intake.
DOR will get you technology training, and the things you need to get a job. They will actually help with that as well.
They can also hook you up with the closest blind center and they will give you the training as well as life training classes like mobility and orientation. When it starts, they will often come to you and meet you for cane training.
Most cities also have training for riding the bus and taking the dial a ride, if you call them. This is a service that they offer for all disabled persons. My bus pass is free through that service program.
I went through all of this, and after several years without any hope I am doing pretty well now. I have a job that I like, and DOR kicked in to make sure I had the equipment that I needed to do the job.
The first two years I was going through this, I was suicidal. I had the oxy stash and I just knew that the day would come when I would just know it was time.
As I met with other blind people and got into the training, it really lifted my spirits. I am pretty tough now, and I know I can overcome anything. They will also probably have a support group at your local center, and I highly encourage you to attend. You are not the only person going through this. We have your back.
NeroTheGlowFox [OP] 4 points 4y ago
Wow, thank you so much. This is great advice and I will be making some calls today to see about all of this. Thank you so much again.
Also, just a quick add I wanted to say that I had applied for disability before while I was still living with my mom and they said she made too much for me to qualify. Does that affect my application now that I filed as an independent?
Also, just a quick add I wanted to say that I had applied for disability before while I was still living with my mom and they said she made too much for me to qualify. Does that affect my application now that I filed as an independent?
Sommiel 2 points 4y ago
Absolutely.
tattooedducky 5 points 4y ago
Find your local center for the blind or a low vision specialist. They can hook you up with all the things. I'm just starting to go through occupational therapy, vocational rehab, and physical therapy.
OutWestTexas 3 points 4y ago
You should look into independent living classes. There is no reason you can’t work and have a great life.
NeroTheGlowFox [OP] 2 points 4y ago
Thank you, I will check it out. :)
delha4 1 points 4y ago
I work for a state blind and low vision agency, and recently took a tour of our rehab center. People stay there for up to several months and learn how to be independent. They learn how to cook, clean, navigate, learn braille, and use computers. Many of the instructors are also blind and visually impaired.
princesspoptarts 2 points 4y ago
Hi friend. I was also born w/ congenital glaucoma and have begun really losing my sight aroud 20 years old. My vision is about 20/400 best corrected in my left eye on a non cloudy vision day and no light perception in right.
Since the cloudy vision (mines causes by dry eye) has taken over, most of my vision is unreliable and so I rarely ever wear my glasses anymore.
If your cloudy vision is caused by dry eye like mine is, I'd suggest finding some good dry eye drops. Those clear up my vision the most when my dry eye isn't too bad. You should also checkj your pressures because I know when mine get high, my vision gets bad.
As for adapting to blindee life, I'm sort of in the same boat. I can't work either and am getting my SSI sorted. I suggest getting a white cane for going out if you don't already have one. The rolling tips work best for those of us who still have some sight.
I have also purchased some raised sticky dots that I place on appliances around the house so I can use them by feel. (Ex: Dot on 5 and on buttons on microwave.)
Losing the ability to play video games and watch anime, my main hobbies, was getting me down, but I am slowly adapting to finding new ones. I can get free audiobooks through BARD (check it out if you're in the US. Bookshare is also good if you're a student.) Netflix has shows with audio description that describes what's happening on screen (most movies in theaters / on DVD have this too if there recent.)
I would also suggest learning to use your phone and computer in it's screenreader mode. Braille would also be a helpful skill to learn, as being born w/ glaucoma means we may go blind from it.
Ultimately, you should try to look up your state's (if you are U.S.) or local blind services, adult rehab services or whatever. In Texas we have our services through the workforce commission and can get into a rehab center that helps us adapt to blind life. They also provide training in white cane skills and other technical stuff. When I'm ready to go back to school, they will also pay for my tuition.
I hope some of this helps. I would love to chat more if you ever want. I've never met someone else w/ congenital glaucoma.
Since the cloudy vision (mines causes by dry eye) has taken over, most of my vision is unreliable and so I rarely ever wear my glasses anymore.
If your cloudy vision is caused by dry eye like mine is, I'd suggest finding some good dry eye drops. Those clear up my vision the most when my dry eye isn't too bad. You should also checkj your pressures because I know when mine get high, my vision gets bad.
As for adapting to blindee life, I'm sort of in the same boat. I can't work either and am getting my SSI sorted. I suggest getting a white cane for going out if you don't already have one. The rolling tips work best for those of us who still have some sight.
I have also purchased some raised sticky dots that I place on appliances around the house so I can use them by feel. (Ex: Dot on 5 and on buttons on microwave.)
Losing the ability to play video games and watch anime, my main hobbies, was getting me down, but I am slowly adapting to finding new ones. I can get free audiobooks through BARD (check it out if you're in the US. Bookshare is also good if you're a student.) Netflix has shows with audio description that describes what's happening on screen (most movies in theaters / on DVD have this too if there recent.)
I would also suggest learning to use your phone and computer in it's screenreader mode. Braille would also be a helpful skill to learn, as being born w/ glaucoma means we may go blind from it.
Ultimately, you should try to look up your state's (if you are U.S.) or local blind services, adult rehab services or whatever. In Texas we have our services through the workforce commission and can get into a rehab center that helps us adapt to blind life. They also provide training in white cane skills and other technical stuff. When I'm ready to go back to school, they will also pay for my tuition.
I hope some of this helps. I would love to chat more if you ever want. I've never met someone else w/ congenital glaucoma.
NeroTheGlowFox [OP] 1 points 4y ago
The last time I saw my doctor a couple weeks ago he suggested some over the counter lubricating eye drops but they didn’t really help much at all.
This was all super helpful though and really nice to hear from someone experiencing the same things as myself.
I’m not super chatty all the time but feel free to message whenever, I’d love to have a new friend. :)
This was all super helpful though and really nice to hear from someone experiencing the same things as myself.
I’m not super chatty all the time but feel free to message whenever, I’d love to have a new friend. :)
Aaron80Percent 2 points 4y ago
I strongly recommend attending a NFB training center if you are in the U.S. they will teach you to be independent in all areas of your life and build your confidence as a blind person.
poochbrah 2 points 4y ago
Lots of good advice here.
I want to share a book with you that'll give you some perspective it's really helped me in dealing with things as a result of my blindness.
It's called feeling good the new mood therapy by David burns and you can get the audio version on audible
I want to share a book with you that'll give you some perspective it's really helped me in dealing with things as a result of my blindness.
It's called feeling good the new mood therapy by David burns and you can get the audio version on audible
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