Blind and Visually Impaired Community
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Visually impaired + trying to locate resources (self.Blind)
submitted by ScatheX1022
Hello everyone,
I was 15 when I had a benign brain tumor removed from my cerebellum (that was the size of my fist), and although I am tumor free, which is downright amazing, I lost a lot of my eyesight due to optic nerve atrophy. Basically the immense pressure building in my head bruised my optic nerve - but as we all know these things don't grow back. My left eye is 20/200, and my right is 20/60 corrected - thank goodness for that right eye! But, I don't drive, and the atrophy causes pieces of my visual field to be basically completely fuzzed out. I have fuzzy little dots in my whole vision, but they are more concentrated in some areas than others. This makes reading small print really tough, my depth perception is awful, I have some color blindness, and am also near sighted - but that's been corrected for my right eye with glasses. My left eye is just so tough to see through all the damage that I can't tell if correction even helps.
I am 34F, and have spent a lot of my life just trying to get by on what vision I have. But I'm really at the point where I need some help getting connected with organizations that can help with assistance. My opthalmologist has refered me to a few local organizations, though I have to complete a visual field test first before we can get that ball fully rolling.
So, I guess what I'm asking is, is there anything I can do to advocate for myself with any other groups? Housing, transportation, employment, they're all an issue because of my eyesight. I've worked with children for my whole adult life, but I was also diagnosed with Lupus about 4 years ago and between getting sick all the time, the risk of Covid, and having to walk both ways to and from work because I don't drive and Uber is hit or miss here in Maine.... I can't do it anymore. I don't know if disability is an option. I'm currently staying with family, but I want to work on bettering my situation in any way possible. I just don't know where to start.
Thanks in advance for any friendly advice :)
I was 15 when I had a benign brain tumor removed from my cerebellum (that was the size of my fist), and although I am tumor free, which is downright amazing, I lost a lot of my eyesight due to optic nerve atrophy. Basically the immense pressure building in my head bruised my optic nerve - but as we all know these things don't grow back. My left eye is 20/200, and my right is 20/60 corrected - thank goodness for that right eye! But, I don't drive, and the atrophy causes pieces of my visual field to be basically completely fuzzed out. I have fuzzy little dots in my whole vision, but they are more concentrated in some areas than others. This makes reading small print really tough, my depth perception is awful, I have some color blindness, and am also near sighted - but that's been corrected for my right eye with glasses. My left eye is just so tough to see through all the damage that I can't tell if correction even helps.
I am 34F, and have spent a lot of my life just trying to get by on what vision I have. But I'm really at the point where I need some help getting connected with organizations that can help with assistance. My opthalmologist has refered me to a few local organizations, though I have to complete a visual field test first before we can get that ball fully rolling.
So, I guess what I'm asking is, is there anything I can do to advocate for myself with any other groups? Housing, transportation, employment, they're all an issue because of my eyesight. I've worked with children for my whole adult life, but I was also diagnosed with Lupus about 4 years ago and between getting sick all the time, the risk of Covid, and having to walk both ways to and from work because I don't drive and Uber is hit or miss here in Maine.... I can't do it anymore. I don't know if disability is an option. I'm currently staying with family, but I want to work on bettering my situation in any way possible. I just don't know where to start.
Thanks in advance for any friendly advice :)
EffectiveYak0 2 points 1y ago
Hey OP, I've had a pretty similar experience with optic nerve atrophy due to a giant brain aneurysm that crushed my optic nerve two years ago. I've got the fuzzies and my visual field is absolutely garbage.
Anyway, I think thus far I've had most success with local government agencies. In Texas there is a workforce commission that can help with all sorts of training and assistance for visually impaired folks. Not sure what state you're in but you might see if your state has a similar program or office.
I will say that it pays to be proactive and get things rolling as soon as possible. Sometimes services take quite a long time to get back to you and get you the resources and help you need.
Good luck!
Anyway, I think thus far I've had most success with local government agencies. In Texas there is a workforce commission that can help with all sorts of training and assistance for visually impaired folks. Not sure what state you're in but you might see if your state has a similar program or office.
I will say that it pays to be proactive and get things rolling as soon as possible. Sometimes services take quite a long time to get back to you and get you the resources and help you need.
Good luck!
ScatheX1022 [OP] 1 points 1y ago
I will definitely look into this, thank you for the suggestion! It's pretty tough asking for advice, I realize, because each state is so different.
Wow, I have never met (or heard from? 😄) anyone who has any idea what I'm talking about when I try to describe my vision! That's actually incredibly exciting. I sometimes say it's like when you push on you eye really hard and see spots, but smaller, and some areas are worse than others. Cause I have a few sparkly spots too, though I don't notice it unless I'm looking for it, really.
Can I ask what you do for work? Do you drive?
The contrast of a black background with white or yellow letters helps me read on a screen a lot easier. Do you find that to be the case too?
Wow, I have never met (or heard from? 😄) anyone who has any idea what I'm talking about when I try to describe my vision! That's actually incredibly exciting. I sometimes say it's like when you push on you eye really hard and see spots, but smaller, and some areas are worse than others. Cause I have a few sparkly spots too, though I don't notice it unless I'm looking for it, really.
Can I ask what you do for work? Do you drive?
The contrast of a black background with white or yellow letters helps me read on a screen a lot easier. Do you find that to be the case too?
EffectiveYak0 2 points 1y ago
I'm a site reliability engineer (tech stuff). My VA is actually pretty good in my right eye (20/30) but my visual field is pretty bad. I don't have any central in my left eye. I like to call it tunnel vision plus. It's not quite 100% obscured but, for example, when I look at a monitor I can only see about one word clearly at a time. The rest of the screen is blurry or distorted. I use a combination of high contrast (dark background with light text) as well as a screen reader for long text. My reading speed with my eye is about 20-30 wpm, but with a screen reader I can get to about 400-450 wpm with pretty good retention. I also use a tool that makes my mouse pointer a large red cross so I can find it easily with my peripheral.
As far as driving goes, I think legally in Texas all you need is 20/60 or better to drive. I don't think there are visual field tests. With that being said, I don't drive because I can hardly see what's in front of me. It would not be safe. Luckily I work in tech and am 100% remote even after the pandemic is going to be over. I also don't go out much and my wife is kind enough to drive me when I need it.
As far as driving goes, I think legally in Texas all you need is 20/60 or better to drive. I don't think there are visual field tests. With that being said, I don't drive because I can hardly see what's in front of me. It would not be safe. Luckily I work in tech and am 100% remote even after the pandemic is going to be over. I also don't go out much and my wife is kind enough to drive me when I need it.
thomasw9 1 points 1y ago
When you say fuzzies, could you describe that? Everything is fuzzy, like visual snow?
EffectiveYak0 2 points 1y ago
Yeah. There are large areas of my visual field that look like sparkles or snow. I also have a big red and green line that runs from the top right to the bottom left. They also stay whether I open my eyes or close them.
ScatheX1022 [OP] 1 points 1y ago
Exactly.
I don't have the line, but I am definitely color blind to an extent, though im not entirely sure how much. Haven't had that tested in a bit.
Are yours black and white fuzzies?
I don't have the line, but I am definitely color blind to an extent, though im not entirely sure how much. Haven't had that tested in a bit.
Are yours black and white fuzzies?
EffectiveYak0 2 points 1y ago
When I first lost vision due to the mechanical pressure on the optic nerve I was completely color blind before going 100% blind for four months. After the pressure let up and my vision started to come back so did the color.
The fuzzy parts are black and white and look like TV static.
The fuzzy parts are black and white and look like TV static.
Iamheno 1 points 1y ago
The American Foundation for the Blind (AFB) online $1 is a searchable listing of vision-related services available in the United States and Canada. It allows you to browse by state or province and type of service, including information and referral, counseling resources, health-related services, low vision services, independent living skills, recreation programs, support groups, travel or orientation and mobility training, computer and assistive technology training, and employment and job training, among other categories. It, provides information on eye diseases and disorders, support groups, daily living skills, technology, and employment.
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To find local services, you can also, call AFB at 1-800-232-5463 (800-AFB-LINE), or write to $1.
Source: Making Life More Livable, Maureen Duffy
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To find local services, you can also, call AFB at 1-800-232-5463 (800-AFB-LINE), or write to $1.
Source: Making Life More Livable, Maureen Duffy
Orinks 1 points 1y ago
I wish NJ had a workforce commission. I haven't had much luck with the general commission services. I think their biggest problem is they outsource work that should probably be done by either blind and visually impaired individuals, or sighted people who have training specific for blind and visually impaired individual's needs. These employees the commission hires have neither. So it's important to do that for education, but not when finding work? okay then...
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