Blind and Visually Impaired Community
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How do you cope with blindness? (self.Blind)
submitted by Ramildo
I was born with a congenital glaucoma affecting both of my eyes, and although I was considered legally blind (exactly 10% of sight) I lived a normal life because the only problem with my vision was the lack of acuity. In 2011 I started to notice loss of contrast perception and eventually lost my sight completely in 2014.
In the beginning I grossly overestimated the effect that the burden that comes with being blind would have on me, as I was extremely positive about the whole situation and quickly applied to a rehabilitation center for the blind so that I could learn to live with my new condition. As time progressed and I attended the rehabilitation center I began to realize that my life would never be simple again and as a result began thinking of suicide, so I accepted the suggestion of seeking help from mental health specialists and started seeing a psychiatrist and a psychologist.
After 4 years I'm already on my third psychologist and second psychiatrist and all of them unanimously say that I'm not clinically depressed; furthermore I don't think it's helping because none of them can solve the underlying problem: my blindness. Essentially I haven't lost interest in anything, I have the same strength I had when I lost my sight, I don't have sleep or eating disorders, I'm not irritable and don't have any other symptom of depression besides wanting to die, which according to the specialists is not enough to consider someone clinically depressed as suicide ideation can have other causes.
I have recently started to learn piano hoping that practicing it would consume all my time, but unfortunately I was wrong as the first grade songs are not very challenging even if I practice like 4 per week, and the teacher has already warned me that in second grade the fingerings won't be as intuitive, so I will have a problem studying at home since I can't read them off the music score and they don't appear in the MIDI files that he creates for me to study.
Coding used to be my previous hobby and profession, and although there are blind programmers out there I personally find coding with a screen-reader to be way too uncomfortable, plus I can no longer design graphical user interfaces thus preventing me from being self-sufficient.
So all of this leads me to the questions: How do you cope with the burden of being blind? What makes you wake up in the morning and think life is worth living with a disability that requires a totally different and unintuitive strategy for everything?
I really don't see a point in living like this! All I ever wanted was an easy life, and I did achieve that as at one point my only clearly first world problem was that my employer only allowed me to work from home on Thursdays and I wanted to work from home every day. Finally, I have no interest in a social life since according to one of my psychiatrists I have a schizoid personality disorder.
In the beginning I grossly overestimated the effect that the burden that comes with being blind would have on me, as I was extremely positive about the whole situation and quickly applied to a rehabilitation center for the blind so that I could learn to live with my new condition. As time progressed and I attended the rehabilitation center I began to realize that my life would never be simple again and as a result began thinking of suicide, so I accepted the suggestion of seeking help from mental health specialists and started seeing a psychiatrist and a psychologist.
After 4 years I'm already on my third psychologist and second psychiatrist and all of them unanimously say that I'm not clinically depressed; furthermore I don't think it's helping because none of them can solve the underlying problem: my blindness. Essentially I haven't lost interest in anything, I have the same strength I had when I lost my sight, I don't have sleep or eating disorders, I'm not irritable and don't have any other symptom of depression besides wanting to die, which according to the specialists is not enough to consider someone clinically depressed as suicide ideation can have other causes.
I have recently started to learn piano hoping that practicing it would consume all my time, but unfortunately I was wrong as the first grade songs are not very challenging even if I practice like 4 per week, and the teacher has already warned me that in second grade the fingerings won't be as intuitive, so I will have a problem studying at home since I can't read them off the music score and they don't appear in the MIDI files that he creates for me to study.
Coding used to be my previous hobby and profession, and although there are blind programmers out there I personally find coding with a screen-reader to be way too uncomfortable, plus I can no longer design graphical user interfaces thus preventing me from being self-sufficient.
So all of this leads me to the questions: How do you cope with the burden of being blind? What makes you wake up in the morning and think life is worth living with a disability that requires a totally different and unintuitive strategy for everything?
I really don't see a point in living like this! All I ever wanted was an easy life, and I did achieve that as at one point my only clearly first world problem was that my employer only allowed me to work from home on Thursdays and I wanted to work from home every day. Finally, I have no interest in a social life since according to one of my psychiatrists I have a schizoid personality disorder.
AngieBeatDown 3 points 5y ago
I lost my vision at 21. Like you I have about 10% left in the dead centre of my left eye.
I sometimes feel sorry for myself it's natural. But I try to focus on what I do have instead of what I don't.
I'm not really much help because k was a miserable, shouting mess when it first happened but I look for one good thing everyday.
I sometimes feel sorry for myself it's natural. But I try to focus on what I do have instead of what I don't.
I'm not really much help because k was a miserable, shouting mess when it first happened but I look for one good thing everyday.
[deleted] 1 points 5y ago
[deleted]
Ramildo [OP] 1 points 5y ago
My psychologist says that there's a huge flaw in my arguments which is that I never consider the possibility of asking for help. The thing is I never had to ask for help when I had sight, and having to rely on others makes me feel extremely insecure.
LUCKY12910 1 points 5y ago
This is the key to have meaning back in your life. At first you were "extremely positive about the whole situation" you can't change anything in your life if you don't want to change it. It all starts whit you having a positive mind set about your blindness I recommend you attend a NFB training center like the Colorado center for the blind you and other people might not agree whit everything they stand for but their center is the best in the world they teach basically having a positive attitude is the key to being successful and I agree they will teach you everything so that your life will be simple again.
"none of them can solve the underlying problem: my blindness. Essentially I haven't lost interest in anything, I have the same strength I had when I lost my sight, I don't have sleep or eating disorders, I'm not irritable and don't have any other symptom of depression besides wanting to die"I thing I had the same problem as you I was not depressed I still had the same energy and I still had the same interest in things. I just didn't have a goal or meaning in my life. I didn't have something to say I can't wait to wake up tomorrow or why do I have to go to sleep instead of doing this thing that I love and makes me happy. My blindness was not holding me back I was. You have the opposite problem your blindness is holding you back there is only one way to solve this problem change you have to change the way you do things meaning you have to get used to being blind it is the only way.
"I have recently started to learn piano hoping that practicing it would consume all my time" Stop playing the piano to kill time practice and learn doing what you really love doing.
"Coding used to be my previous hobby and profession, and although there are blind programmers out there I personally find coding with a screen-reader to be way too uncomfortable" The reason you thing it is uncomfortable is because you don't know how to do it a different way practice and learn how to code whit a screen reader and you will be back doing what you love and makes you happy. "plus I can no longer design graphical user interfaces thus preventing me from being self-sufficient." As you said there is blind coders ask them how they do it you are not the last person to have to learn how to cope with a screen reader. I am trying to learn how to code myself for the first time I am taking some free online harbor courses.
"How do you cope with the burden of being blind?" I don't thing being blind is a burden to me or anyone else. since I can do everything for myself. "What makes you wake up in the morning and think life is worth living with a disability that requires a totally different and unintuitive strategy for everything?" Doing things differently is just how you have to life to be successful now no way around it. "I really don't see a point in living like this! All I ever wanted was an easy life, and I did achieve that as at one point" This is how you get that back whit technology, blindness training, and a extremely positive attitude like when you first lost your sight is how you have a easy life again. "Finally, I have no interest in a social life" Was it like this before you lost your sight? If yes than maybe you just are not a social person simple as that.
"none of them can solve the underlying problem: my blindness. Essentially I haven't lost interest in anything, I have the same strength I had when I lost my sight, I don't have sleep or eating disorders, I'm not irritable and don't have any other symptom of depression besides wanting to die"I thing I had the same problem as you I was not depressed I still had the same energy and I still had the same interest in things. I just didn't have a goal or meaning in my life. I didn't have something to say I can't wait to wake up tomorrow or why do I have to go to sleep instead of doing this thing that I love and makes me happy. My blindness was not holding me back I was. You have the opposite problem your blindness is holding you back there is only one way to solve this problem change you have to change the way you do things meaning you have to get used to being blind it is the only way.
"I have recently started to learn piano hoping that practicing it would consume all my time" Stop playing the piano to kill time practice and learn doing what you really love doing.
"Coding used to be my previous hobby and profession, and although there are blind programmers out there I personally find coding with a screen-reader to be way too uncomfortable" The reason you thing it is uncomfortable is because you don't know how to do it a different way practice and learn how to code whit a screen reader and you will be back doing what you love and makes you happy. "plus I can no longer design graphical user interfaces thus preventing me from being self-sufficient." As you said there is blind coders ask them how they do it you are not the last person to have to learn how to cope with a screen reader. I am trying to learn how to code myself for the first time I am taking some free online harbor courses.
"How do you cope with the burden of being blind?" I don't thing being blind is a burden to me or anyone else. since I can do everything for myself. "What makes you wake up in the morning and think life is worth living with a disability that requires a totally different and unintuitive strategy for everything?" Doing things differently is just how you have to life to be successful now no way around it. "I really don't see a point in living like this! All I ever wanted was an easy life, and I did achieve that as at one point" This is how you get that back whit technology, blindness training, and a extremely positive attitude like when you first lost your sight is how you have a easy life again. "Finally, I have no interest in a social life" Was it like this before you lost your sight? If yes than maybe you just are not a social person simple as that.
quanin 1 points 5y ago
I honestly think a rehabilitation center would be the best place for you. Mostly because they can help you with adapting the things you used to have absolutely no trouble doing to your current situation. It's entirely possible that you can still do your former job even while being blind, but first you aught to really work on figuring out what being blind means for you.
You can still design GUIs while blind--and, in fact, you're more likely to design an accessible one out of the box because, you know, you kind of still need to be able to use the thing you're designing. While my lack of vision means I can't comment on the asthetics of some of the programs with GUIs written by blind people for blind people, they do exist, and I know at least one company (RS Games) has quite a few sighted people playing via their website (the client at last check doesn't actually have its own GUI).
Your other questions are a little difficult to answer for someone like me, having never had sight and therefore only knowing the blindy way of doing things. But for a little perspective, assume I woke up tomorrow morning and could see. Like you, I would have to put my life on hold and literally relearn how to do just about everything I do in a day. Having had absolutely no direct exposure to having had sight, I'd probably have little to no idea how to handle it. I sometimes wonder if, on some level, at least my initial thought process would follow a similar line as yours has. I think someone trying to teach me how to be sighted would run into a similar problem I would if I were trying to teach you how to be blind. Half the time I don't even think of how I'm doing a thing--I just do it and it's done.
I wish I could be more help than this, but hopefully you can find the workaround that solves most of your problems. In the meantime, no doubt several people in this sub will drop suggestions for solving the tricky ones if you ask.
You can still design GUIs while blind--and, in fact, you're more likely to design an accessible one out of the box because, you know, you kind of still need to be able to use the thing you're designing. While my lack of vision means I can't comment on the asthetics of some of the programs with GUIs written by blind people for blind people, they do exist, and I know at least one company (RS Games) has quite a few sighted people playing via their website (the client at last check doesn't actually have its own GUI).
Your other questions are a little difficult to answer for someone like me, having never had sight and therefore only knowing the blindy way of doing things. But for a little perspective, assume I woke up tomorrow morning and could see. Like you, I would have to put my life on hold and literally relearn how to do just about everything I do in a day. Having had absolutely no direct exposure to having had sight, I'd probably have little to no idea how to handle it. I sometimes wonder if, on some level, at least my initial thought process would follow a similar line as yours has. I think someone trying to teach me how to be sighted would run into a similar problem I would if I were trying to teach you how to be blind. Half the time I don't even think of how I'm doing a thing--I just do it and it's done.
I wish I could be more help than this, but hopefully you can find the workaround that solves most of your problems. In the meantime, no doubt several people in this sub will drop suggestions for solving the tricky ones if you ask.
Ramildo [OP] 1 points 5y ago
> I honestly think a rehabilitation center would be the best place for you.
I've been to a rehabilitation center for the blind and I mentioned that in the original post. I also mentioned that it was there that my suicide ideation started, as I became extremely insecure. Let me give you an example: you hop on a train to a familiar place but fall asleep and miss the train station where you were supposed to exit. If you are sighted it's easy to find the overpass and cross the track to catch the train in the opposite direction, even if it was the last train you can easily navigate the train station to an exit and catch a cab to take you to your destination. If you are blind, however, you are now in an unfamiliar place and either have to ask for assistance or spend a lot of time searching for the overpass or the exit. It's this kind of inability to improvise when faced with the unexpected that leaves me extremely insecure, so I end up staying home and conditioning my freedom.
> You can still design GUIs while blind--and, in fact, you're more likely to design an accessible one out of the box because, you know, you kind of still need to be able to use the thing you're designing.
Designing a GUI that the sighted would want to use without being able to see is nigh on impossible, and I don't want to be targeting only the 0.1% of the population that is totally blind. Applications designed by the blind often tend to miscalculate the size of things. Font sizes, for example, are very hard to calculate without visual feedback because most fonts are not fixed-width, and don't even get me started about games, especially 3D games with perspectives.
I've been to a rehabilitation center for the blind and I mentioned that in the original post. I also mentioned that it was there that my suicide ideation started, as I became extremely insecure. Let me give you an example: you hop on a train to a familiar place but fall asleep and miss the train station where you were supposed to exit. If you are sighted it's easy to find the overpass and cross the track to catch the train in the opposite direction, even if it was the last train you can easily navigate the train station to an exit and catch a cab to take you to your destination. If you are blind, however, you are now in an unfamiliar place and either have to ask for assistance or spend a lot of time searching for the overpass or the exit. It's this kind of inability to improvise when faced with the unexpected that leaves me extremely insecure, so I end up staying home and conditioning my freedom.
> You can still design GUIs while blind--and, in fact, you're more likely to design an accessible one out of the box because, you know, you kind of still need to be able to use the thing you're designing.
Designing a GUI that the sighted would want to use without being able to see is nigh on impossible, and I don't want to be targeting only the 0.1% of the population that is totally blind. Applications designed by the blind often tend to miscalculate the size of things. Font sizes, for example, are very hard to calculate without visual feedback because most fonts are not fixed-width, and don't even get me started about games, especially 3D games with perspectives.
quanin 1 points 5y ago
> Let me give you an example: you hop on a train to a familiar place but fall asleep and miss the train station where you were supposed to exit. If you are sighted it's easy to find the overpass and cross the track to catch the train in the opposite direction, even if it was the last train you can easily navigate the train station to an exit and catch a cab to take you to your destination. If you are blind, however, you are now in an unfamiliar place and either have to ask for assistance or spend a lot of time searching for the overpass or the exit. It's this kind of inability to improvise when faced with the unexpected that leaves me extremely insecure, so I end up staying home and conditioning my freedom.
That honestly depends on the person. I've met blind people who seem to have an always-on internal GPS and can get themselves situated where they need to be even if you leave them in the middle of the street and turn them around 5 times. On the other hand, I know too many sighted people who couldn't find the exit if you pointed them to a sign that said "exit this way and on your right". Unfortunately which end of the spectrum you're on is going to depend largely on something you're just not going to have after only 4 years being blind--that being the ability to map out an area while you're travelling without relying on visual queues. Having never had to do that, I won't even try offering suggestions for ways you might be able to cope with that, but if you only lost your sight in 2014 I'm not surprised you're not there yet. Again, I'd probably be in the exact same boat if I gained the ability to see on the day you lost it--I'm used to navigating without it, you're used to navigating with it, we're both going to have to relearn pretty much everything.
> Designing a GUI that the sighted would want to use without being able to see is nigh on impossible, and I don't want to be targeting only the 0.1% of the population that is totally blind. Applications designed by the blind often tend to miscalculate the size of things. Font sizes, for example, are very hard to calculate without visual feedback because most fonts are not fixed-width, and don't even get me started about games, especially 3D games with perspectives.
I'll take your word for it on this--I just use the programs and leave the design and development to people who want the headache. I just know based on what I've seen that it's possible to make a something the sighted can interact with. Is it perfect? I don't know. Probably not. But the devs I'm aware of who do this also aren't shy about asking a sighted friend if they could take 5 seconds and tell them if the thing looks like absolute ass. Sometimes asking is unavoidable, and that's one of those things I'm not sure how to help you get used to--as again, you're coming from a place I've never been.
That honestly depends on the person. I've met blind people who seem to have an always-on internal GPS and can get themselves situated where they need to be even if you leave them in the middle of the street and turn them around 5 times. On the other hand, I know too many sighted people who couldn't find the exit if you pointed them to a sign that said "exit this way and on your right". Unfortunately which end of the spectrum you're on is going to depend largely on something you're just not going to have after only 4 years being blind--that being the ability to map out an area while you're travelling without relying on visual queues. Having never had to do that, I won't even try offering suggestions for ways you might be able to cope with that, but if you only lost your sight in 2014 I'm not surprised you're not there yet. Again, I'd probably be in the exact same boat if I gained the ability to see on the day you lost it--I'm used to navigating without it, you're used to navigating with it, we're both going to have to relearn pretty much everything.
> Designing a GUI that the sighted would want to use without being able to see is nigh on impossible, and I don't want to be targeting only the 0.1% of the population that is totally blind. Applications designed by the blind often tend to miscalculate the size of things. Font sizes, for example, are very hard to calculate without visual feedback because most fonts are not fixed-width, and don't even get me started about games, especially 3D games with perspectives.
I'll take your word for it on this--I just use the programs and leave the design and development to people who want the headache. I just know based on what I've seen that it's possible to make a something the sighted can interact with. Is it perfect? I don't know. Probably not. But the devs I'm aware of who do this also aren't shy about asking a sighted friend if they could take 5 seconds and tell them if the thing looks like absolute ass. Sometimes asking is unavoidable, and that's one of those things I'm not sure how to help you get used to--as again, you're coming from a place I've never been.
[deleted] 1 points 5y ago
[deleted]
KillerLag 1 points 5y ago
It sounds like you have a lot going on. One thing I should mention is that while I have worked with many people with vision loss, that doesn't necessarily mean all of my suggestions or advice are appropriate for you. I only know what you've mentioned in here, and I have to fill in some of the blanks through guesswork.
It sounds like you are going through the depression stage of the stages of grief. Something happened that has thrown your life in a loop, and you are still trying to to come to terms with that. That is common, and it does take time to process everything.
One thing you said was, you don't see the point of living without vision. May I ask why you think that? You are in a situation where you can't do things the way you have expected to, but you are still capable of doing most of it. If the screen reader is uncomfortable, have you considered supplementing it with a Braille display?
Just because someone is living with vision loss doesn't mean that everything is different and unintuitive. I"ll use an O&M example. For someone to cross a lighted intersection, regardless of vision or not, they need to determine if the light ahead of them is green or red, and if it is safe to cross. Someone with vision can use their eyes, but someone who is blind can use their hearing to identify contextual clues. That doesn't always work for vision loss (loud noises creating confusion, or complete lack of traffic), but the same could be argued for vision as well (severe fog). It isn't always the easiest way to do something, but it is something you can do.
You mentioned you want an easy life... that is still achievable, but it takes time. For your job, did you have to work hard in school to get good grades? Did you have to put in effort to get to that position? It is something similar, the skills are different. Rehabilitation is relearning the skills for daily living, which takes time and practice. That may not be something that you want to hear, but that is unfortunately how life goes.
Good luck with everything! Hopefully some of that helped. If you have any questions, you can ask me on here or PM me.
It sounds like you are going through the depression stage of the stages of grief. Something happened that has thrown your life in a loop, and you are still trying to to come to terms with that. That is common, and it does take time to process everything.
One thing you said was, you don't see the point of living without vision. May I ask why you think that? You are in a situation where you can't do things the way you have expected to, but you are still capable of doing most of it. If the screen reader is uncomfortable, have you considered supplementing it with a Braille display?
Just because someone is living with vision loss doesn't mean that everything is different and unintuitive. I"ll use an O&M example. For someone to cross a lighted intersection, regardless of vision or not, they need to determine if the light ahead of them is green or red, and if it is safe to cross. Someone with vision can use their eyes, but someone who is blind can use their hearing to identify contextual clues. That doesn't always work for vision loss (loud noises creating confusion, or complete lack of traffic), but the same could be argued for vision as well (severe fog). It isn't always the easiest way to do something, but it is something you can do.
You mentioned you want an easy life... that is still achievable, but it takes time. For your job, did you have to work hard in school to get good grades? Did you have to put in effort to get to that position? It is something similar, the skills are different. Rehabilitation is relearning the skills for daily living, which takes time and practice. That may not be something that you want to hear, but that is unfortunately how life goes.
Good luck with everything! Hopefully some of that helped. If you have any questions, you can ask me on here or PM me.
Ramildo [OP] 1 points 5y ago
> One thing you said was, you don't see the point of living without vision. May I ask why you think that?
Two reasons: The first is because I simply miss sight, the sense itself, it's not just the loss of functionality. The second is because there are limitations all over the place, and while there are workarounds for many of them, those workarounds are not obvious thus making me feel insecure because I lost the ability to improvise.
> If the screen reader is uncomfortable, have you considered supplementing it with a Braille display?
Yes, but my Braille skills suck, and I think it's a sensory problem because I write Braille much faster than I read it, plus Braille still requires me to create a mental image of the code since I can't quickly glance at other lines and read code without moving the caret, which is difficult when the sources grow large or when I attempt to read code written by other people.
> You mentioned you want an easy life... that is still achievable, but it takes time. For your job, did you have to work hard in school to get good grades? Did you have to put in effort to get to that position? It is something similar, the skills are different. Rehabilitation is relearning the skills for daily living, which takes time and practice. That may not be something that you want to hear, but that is unfortunately how life goes.
I'm a high school drop-out who never really cared about grades, and I didn't have to put any effort into getting my job. I was hired to that position as a result of a personal project involving the Linux kernel that I published online which attracted a small community of developers and sparked my company's interest in me. This is actually in tune with my philosophy of life, where one should only put effort into finding something productive and enjoyable and reap the rewards of doing that thing. I see no point in doing things that I don't like; we are in this world to be happy and productive, if we can't be either, our existence is futile.
Two reasons: The first is because I simply miss sight, the sense itself, it's not just the loss of functionality. The second is because there are limitations all over the place, and while there are workarounds for many of them, those workarounds are not obvious thus making me feel insecure because I lost the ability to improvise.
> If the screen reader is uncomfortable, have you considered supplementing it with a Braille display?
Yes, but my Braille skills suck, and I think it's a sensory problem because I write Braille much faster than I read it, plus Braille still requires me to create a mental image of the code since I can't quickly glance at other lines and read code without moving the caret, which is difficult when the sources grow large or when I attempt to read code written by other people.
> You mentioned you want an easy life... that is still achievable, but it takes time. For your job, did you have to work hard in school to get good grades? Did you have to put in effort to get to that position? It is something similar, the skills are different. Rehabilitation is relearning the skills for daily living, which takes time and practice. That may not be something that you want to hear, but that is unfortunately how life goes.
I'm a high school drop-out who never really cared about grades, and I didn't have to put any effort into getting my job. I was hired to that position as a result of a personal project involving the Linux kernel that I published online which attracted a small community of developers and sparked my company's interest in me. This is actually in tune with my philosophy of life, where one should only put effort into finding something productive and enjoyable and reap the rewards of doing that thing. I see no point in doing things that I don't like; we are in this world to be happy and productive, if we can't be either, our existence is futile.
PolariChat 1 points 5y ago
Hi thanks for your post. I don't have any solutions for you all I can say is that I feel much the same as you do. I plod about each day doing the best I can. Some days are better than others and a lot of them turn out good. I always have this feeling of sadness but that is OK as a lot of things have changed since I lost my sight. Things are different now but I believe that if I keep putting one foot in front of the other albeit with a guide dog now. Change will happen and it will be alright.
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