Blind and Visually Impaired Community
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Did anyone lose their sight while an adult and if so how did you cope? My sight is slowly deteriorating due to a rare disease and I struggle to process what I’m seeing on a tv screen when working now. (self.Blind)
submitted by triton100
It takes me three time’s a long to do any work on a computer now. And before when I enjoyed doing computer stuff now it’s completely frustrating and painful. And I’m not sure how I’ll cope if my vision gets much worse.
Duriello 13 points 3y ago
I'm a geek and lost my sight shortly before my 32nd birthday, and the loss of functionality was very hard for me to cope with. I was so bored during the first 5 years that all I could think about was killing myself. Eventually last year I figured that I could still code, which was my life before going blind, and things improved a lot. It's not perfect as I'm much slower now and there are things that I'm very envious of the sighted such as their ability to appreciate real-time ray-traced graphics which were not yet a thing in 2014, but I can live with my blindness now because at least I have personal projects to entertain myself with.
I'm still a very long way from full adaptation though, as the only thing I can do independently these days is to use a computer. My family and house maid do all of the chores, and I pay for almost everything since my mother is buried in debt but thankfully my disability benefits are more than enough for all of that. Sometimes I wonder how my life would be if I still had to work, because I wouldn't feel safe or competent in a job setting as I don't know whether my skills are enough to offset my disability.
Going blind as an adult is something that you get used to with time but never fully accept. That is, at least, my experience after 6 years of this.
I'm still a very long way from full adaptation though, as the only thing I can do independently these days is to use a computer. My family and house maid do all of the chores, and I pay for almost everything since my mother is buried in debt but thankfully my disability benefits are more than enough for all of that. Sometimes I wonder how my life would be if I still had to work, because I wouldn't feel safe or competent in a job setting as I don't know whether my skills are enough to offset my disability.
Going blind as an adult is something that you get used to with time but never fully accept. That is, at least, my experience after 6 years of this.
nounclejesse 2 points 3y ago
Reply to op....you learn to cope. I've had cateracts for a couple years. Got tested in February and vision is 20/200 now. I haven't been in a financial situation where I could get them fixed until March (been saving for the deductible) and then everything got shut down. I'm a huge classic movie fan and now have to sit about four feet from my 55 inch TV. If the movie has subtitles then ether I read the subtitles or watch the movie. I can't recognize people in the hall so have to listen to their voice. I listen to music alot more. I was a big reader, now listen to audiobooks. Point is, like I said, we learn to cope and adapt. The only thing I've had to give up is fixing mechanical watches as I simply can't see the gears so I switched to clocks.
throwaway120004 3 points 3y ago
I had my cataracts removed early in the year. I am still blind at 20/200 but holy cow the cataract surgery allowed me to see colors I hadn't seen in years! I hope you can have your surgeries soon!!
triton100 [OP] 2 points 3y ago
Thanks. I guess it’s about adapting like you say
TerminatedProccess 2 points 3y ago
If you look into flutter and dart, you can make phone apps for both Android and IOS. Maybe make your own income? I'm looking into this now. I'm not blind but my uncle just became so..
AndAdapt 2 points 3y ago
Check out swiftui, the interfaces are built in code. No need to drag and drop
TerminatedProccess 1 points 3y ago
Will do
aaronespinozaca 1 points 3y ago
That's good that you have gotten better. I remember seen your post and you where really struggling with your blindness.
triton100 [OP] 1 points 3y ago
Thanks for your reply. And sorry to hear about your experience. I’m honestly so so nervous that I may lose what I’ve got remaining. I’m trying not to think about it as worrying will only make things worse. Tho I’m not sure I’d have the strength or courage to cope if the worse happens.
throwaway120004 3 points 3y ago
I am 41 and just seemed legally blind after decades of dealing with an autoimmune disorder that attacks my eyes. It has been a slower process, deteriorating more rapidly during the last few years. I can still see....just not that well. I now have glasses that allow me to see the tv and be able to actually read the menu on the tv! The loss of my ability to be independent has been the biggie. I cant drive anymore and that hurts. I no longer work and that hurt too. After a year of feeling bad for myself I am starting to realize I can do things independently, I just have to do it differently than before. I feel lucky that I had this slow transition rather than an instant accident...I have time to deal and cope with ot. The best of luck to you!!!
DrillInstructorJan 2 points 3y ago
Hey throwaway, I've often felt like going from all to nothing in a day made it easier because I didn't have to deal with expecting it to happen and it was simpler. I guess it's better the devil you know but as to work I bet there's a way you can make it happen. It's like working two jobs, the job you want to do and then the disability, but it's so worth it.
triton100 [OP] 1 points 3y ago
I’m sorry to hear that. May I ask more questions. Like what is the disease you had. And if you can read the menu on the tv and watch tv does that not mean you could still see somewhat to be able to work ?
throwaway120004 1 points 3y ago
I have Intermediate Uveitis and Multiple Sclerosis. Even with my glasses now, I am still considered legally blind. Since I am not able to drive, and with the MS I tire easily when walking or physical exertion it makes getting around difficult. I have a lot of trouble with dark images in movies and have most settings set to high contrast to help. My husband is an artist and works from home so I have the luxury of helping him as a "job". I am learning to adjust to the fact that this is the best I will ever see and that is ok. I'll figure out how to still be productive and happy!
triton100 [OP] 1 points 3y ago
I have the same condition. And must admit am scared it’s going to gradually get much worse as my eyes aren’t responding to the eylia and humira injections. I think I need to try and be as positive as possible though as worrying may make things worse. I dint want to create a self fulfilling prophecy. Bless you and your amazing attitude. I wish you all the best 👍
throwaway120004 1 points 3y ago
So for me I think my permanent vision loss is attributed to 2 things. First, I am a steroid responder so the treatments always caused just such trouble as the disease itself. Secondly, I have lesions on my optic nerves and had leaky blood vessels in my eyes for a while.
I have always done computer work and have learned to adapt along the way, using everything under the sun to help. Driving became my biggest challenge. I should have stopped driving years ago but was too stubborn. I moved to a new city in a new state last year and realized there was no way I was gonna be able to drive safely. I was just approved for social security for being considered legally blind at 20/200. If you ever have questions or wanna talk about it, I'm here!
I have always done computer work and have learned to adapt along the way, using everything under the sun to help. Driving became my biggest challenge. I should have stopped driving years ago but was too stubborn. I moved to a new city in a new state last year and realized there was no way I was gonna be able to drive safely. I was just approved for social security for being considered legally blind at 20/200. If you ever have questions or wanna talk about it, I'm here!
Envrin 2 points 3y ago
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I suddenly went blind about 3.5 years ago at the age of 35. Simply fell one day, hit my head in the wrong spot, and a few weeks later totally blind in both eyes after the blood leaked from behind my eyes through the lesions in my optic nerve.
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Was definitely an adjustment, that's for sure. For me though, it was basically do or die. I was living in NE Thailand with my boyfriend (I'm gay) at the time, so had to quickly figure out how to begin using the computer blind so I could continue working and developing software.
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Was quite the battle though. Upon initially going blind, I had to relearn everything. How to walk, cook, put on clothes, take care of my dogs, use a phone, use the computer, everything. Was frustrating, but perservered as it was that or basically die homesless in NE Thailand, which didn't seem like much fun. Pulled though, it's still a struggle, but getting there now.
I suddenly went blind about 3.5 years ago at the age of 35. Simply fell one day, hit my head in the wrong spot, and a few weeks later totally blind in both eyes after the blood leaked from behind my eyes through the lesions in my optic nerve.
​
Was definitely an adjustment, that's for sure. For me though, it was basically do or die. I was living in NE Thailand with my boyfriend (I'm gay) at the time, so had to quickly figure out how to begin using the computer blind so I could continue working and developing software.
​
Was quite the battle though. Upon initially going blind, I had to relearn everything. How to walk, cook, put on clothes, take care of my dogs, use a phone, use the computer, everything. Was frustrating, but perservered as it was that or basically die homesless in NE Thailand, which didn't seem like much fun. Pulled though, it's still a struggle, but getting there now.
triton100 [OP] 1 points 3y ago
Wow!! I’m so so sorry to hear that. But what an achievement to have conquered so much. I think you’re an AMAZING person. Thanks for sharing your story
DrillInstructorJan 2 points 3y ago
I was 19, which I guess is just about an adult, though when I look back at then-me then I feel like building a time machine so I can go back and yell at her. She needed yelling at.
If you are anything like me, it is frustrating and painful, but it is not completely frustrating and painful. Sometimes I have found that just telling people that makes it more okay. You won't like it, I don't like it, I never will, I will never sugar coat it. There are two approaches. Either you avoid tough stuff, which is less annoying but more feeble, or you smash through the situation with sheer effort of will. I like option 2 because I am stubborn but every so often you have to fall back to option 1 because we are human and we have a limited capacity for being ornery critters.
Option 2 lets you do more stuff but it is exhausting. I measure my personal success by the proportion of option 2 I manage to keep up. So far I credit myself with doing okay and that makes it all right. Now I'm going to go and pursue option one on the couch for a bit because last week was mad.
Hope that helps.
If you are anything like me, it is frustrating and painful, but it is not completely frustrating and painful. Sometimes I have found that just telling people that makes it more okay. You won't like it, I don't like it, I never will, I will never sugar coat it. There are two approaches. Either you avoid tough stuff, which is less annoying but more feeble, or you smash through the situation with sheer effort of will. I like option 2 because I am stubborn but every so often you have to fall back to option 1 because we are human and we have a limited capacity for being ornery critters.
Option 2 lets you do more stuff but it is exhausting. I measure my personal success by the proportion of option 2 I manage to keep up. So far I credit myself with doing okay and that makes it all right. Now I'm going to go and pursue option one on the couch for a bit because last week was mad.
Hope that helps.
triton100 [OP] 2 points 3y ago
I love your incredible attitude. You sound like an awesome person with a strong mindset. I can be strong but I’ve been getting down recently what with the noticeable degradation and complications. And then my mind wonders to how will I work (it’s all computer based) how will I find a partner, enjoy the sun etc. I struggle even appreciating a beautiful day now as my eyesight is littered with so much distortion, huge floaters and blurriness now that I get really down.
DrillInstructorJan 3 points 3y ago
Calm down, I have to be able to get my head through the door on the way out! And bear in mind this is the internet. Everyone has a great life on the internet. Some people might have been crying into their boyfriend's shoulder over being blind just a few days ago. They'd probably never tell you, though, because they have to keep up the appearance of being an unstoppable hardass at all times. Ahem.
One thing I can't do is relate to being partially sighted because I never was. I went from normal sight to nothing. I don't know what the likely long term situation is for you, and you may not know, but in the end it doesn't matter very much. Work you can solve. If it involves a lot of unpredictable traveling around, which mine does, then it will wear you out. You solve problems. You solve them one after another until you don't have any more to solve and if you need help you grind your teeth and ask for it. You will be exhausted but you will do it anyway because there's nothing better than falling into bed knowing you earned it. Get a phone you can use quickly, and carry a battery back up power bank for it. There's nothing quite like being stranded somewhere with five per cent battery.
I'm typing this having just got back from a walk with my other half. It's a beautiful spring day in England. I knew him back when I could see, although we weren't a couple then. He was always told to describe the world to me so I wouldn't go all weird and forget what it's like. It hurt like hell for him to do that, for a long time, and I hated that he did it, but as a result I remember what colours are and what things look like in a way that a lot of people don't. You may never get that blind, but you are not in a nice situation and you don't have to like it. You do have to find a way to live with not liking it. I think it's possible to do that.
I don't want to pep talk you because that's patronising. I'm just saying things that would have worked for me, way back when. Let me know how I'm doing!
One thing I can't do is relate to being partially sighted because I never was. I went from normal sight to nothing. I don't know what the likely long term situation is for you, and you may not know, but in the end it doesn't matter very much. Work you can solve. If it involves a lot of unpredictable traveling around, which mine does, then it will wear you out. You solve problems. You solve them one after another until you don't have any more to solve and if you need help you grind your teeth and ask for it. You will be exhausted but you will do it anyway because there's nothing better than falling into bed knowing you earned it. Get a phone you can use quickly, and carry a battery back up power bank for it. There's nothing quite like being stranded somewhere with five per cent battery.
I'm typing this having just got back from a walk with my other half. It's a beautiful spring day in England. I knew him back when I could see, although we weren't a couple then. He was always told to describe the world to me so I wouldn't go all weird and forget what it's like. It hurt like hell for him to do that, for a long time, and I hated that he did it, but as a result I remember what colours are and what things look like in a way that a lot of people don't. You may never get that blind, but you are not in a nice situation and you don't have to like it. You do have to find a way to live with not liking it. I think it's possible to do that.
I don't want to pep talk you because that's patronising. I'm just saying things that would have worked for me, way back when. Let me know how I'm doing!
triton100 [OP] 1 points 3y ago
Thanks so much for sharing all that and your personal story. I’m going to try and. E as positive as I can. I don’t want to create a self fulfilling prophecy by dwelling worrying and thinking of the worse. If it happened I’ll deal with it then. As best I can. Take care 👍
AndAdapt 1 points 3y ago
Lost my sight as an adult. Similar situation to you
Love technology. Completed my masters in machine learning with no sight, now starting to teach computer science at secondary schools in the uk. Definitely lots of opportunities out there with technology.
As others have said it's about adapting. Is not easy but better than doing nothing.
If you want to chat message me on here
Love technology. Completed my masters in machine learning with no sight, now starting to teach computer science at secondary schools in the uk. Definitely lots of opportunities out there with technology.
As others have said it's about adapting. Is not easy but better than doing nothing.
If you want to chat message me on here
triton100 [OP] 1 points 3y ago
Thanks a lot. How do use a computer without sight ? And also how do people take to you in your secondary school. Kids can be mean
AndAdapt 1 points 3y ago
I use a screen reader.
Not been a problem. They all have access to Google and my name. So generally aware of what I can do and have done
Not been a problem. They all have access to Google and my name. So generally aware of what I can do and have done
triton100 [OP] 1 points 3y ago
That’s awesome. I bet they probably think you’re super cool actually. Can you recommend any screen readers ?
AndAdapt 1 points 3y ago
For mac or iOS your only real choice is VoiceOver. If you are into development then install emacs with emacspeak under MacOS.
Windows, NVDA is the free solution and quite good too.
If your condition is degenerative definitely worth playing with them a little now.
Windows, NVDA is the free solution and quite good too.
If your condition is degenerative definitely worth playing with them a little now.
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