Blind and Visually Impaired Community
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Grieving vision loss ? (self.Blind)
submitted 5.201331757973251y ago by avrilcusack
I guess this is the first time I've ever posted on reddit so... maybe this is a bad intro but hey, I'm posting here because I'm legally blind and losing my vision quite fast , I'm finding it hard, guess I'm looking for support, asking if anyone is going through something similar ?
Amonwilde 5 points 5y ago
I'm losing my vision as well and there's definitely a process of grieving that needs to happen. Be forgiving to yourself, find support in your community if you can, and keep working on your skills so that you retain control over your life. And know that there is life and happiness after blindness if you seek it.
avrilcusack [OP] 2 points 5y ago
Thank you for sharing and supporting with me
I'm constantly battling the will to give up , I know that there has to be more than sight to be happy with life, I'm on that journey now to find it hopefully I find it soon
I'm constantly battling the will to give up , I know that there has to be more than sight to be happy with life, I'm on that journey now to find it hopefully I find it soon
Amonwilde 2 points 5y ago
You will find it if you look for it. It's a question of faith, not in a higher power, but in that you will survive a step into the unknown. Because giving up is the real danger, deciding that you will survive means that you probably will.
Keep posting and keep journeying.
Keep posting and keep journeying.
avrilcusack [OP] 1 points 5y ago
Thank you that means a lot, good words of wisdom :)
redstone1337 5 points 5y ago
Hi, I've recently lost vision thanks to some accidents. I've been legally blind all my life, but it's gotten worse. I used to use large print for almost everything, but now I'm slowly moving over to braille.
I know how you feel.
I know how you feel.
avrilcusack [OP] 2 points 5y ago
Thank you for sharing your story , I've been told I need to start learning Braille but I'm so much like "I don't need it I'm fine" that it's getting ridiculous ... I know I need it I just don't want to need it /: not only that but it's hard /: and my attention span is pretty small xD
redstone1337 1 points 5y ago
It's definitely hard, but it opens up so much. Look at the Orbit Reader 20. It's cheap (for a braille display), but you can carry around tons of books that way.
For practice I like reading kids books I enjoyed as a child, that way I get a sense of accomplishment when I finish an entire book.
For practice I like reading kids books I enjoyed as a child, that way I get a sense of accomplishment when I finish an entire book.
avrilcusack [OP] 1 points 5y ago
That's a great idea I might look into that :)
TodesKoenig 4 points 5y ago
Hello, over the last four years I lost my vision due to medical reasons mixed with the results of having a really bad car accident. I’m not sure that I went through a grieving process really but I do have some days where I’m down on myself and in the condition that I am in today. I tried to get help from several resources such as the braille Institute as well is a couple of other groups and advocates for blind people here in Los Angeles. I didn’t get much feedback from them and I found that I had to resort to going online and seeing how people tend to get around and get by with what they have available. I found that my iPhone and iPad are great tools to use, I did find that there are a lot of places that have accessibility options that help out and make life just a bit easier. As far as the grieving process, all I can do really is hope that somebody will listen to me if and when I feel down. I’m lucky in that I have a wife that has been extremely supportive of me as well as a great circle of friends and family that honestly don’t let me quit. This helps because in the past, I was that person who would sit and listen to people grieve and vocalize any frustrations that they might’ve had in their lives. And saying this, I guess I’m saying that if anybody here every needs to speak to anybody they can reach out to me. I’m barely getting to know read it via the app here and I find it a little frustrating as some other people in this forum have expressed but I’m hoping that once I get a little bit more familiar with it it’ll be more of a breeze to maneuver around. So if anybody out there needs an extra year, then they can reach out in whatever manner they would choose to. I’m not sure how people keep in touch here and read it but I’m open to sending DM’s and emails or anything of the sort that will help people communicate with me and vice versa. I hope you get some help, and I hope you feel better in your situation. The best you can do is remember that there is always help when you need it you just have to ask sometimes.
avrilcusack [OP] 3 points 5y ago
Thank you for sharing your story :)
It's lovely that you can offer That , and I offer the same if anyone wants an ear I'm open
It's lovely that you can offer That , and I offer the same if anyone wants an ear I'm open
SnoobertDoobertDoo 3 points 5y ago
A similar thing happened to me. I won't go into the medical details too much because holy crap that's a long story, but basically I was just finishing high school when I got (mis)diagnosed as having RP after showing symptoms of it that indicated it being in a very early stage. Doctor said I'd have ~15 years or so before it even started being an issue. So I figured okay cool. I'll go ahead and accept one of my university offers, and I'll worry about maybe going blind in a decade or so if it gets to that. At least I can get a solid foundation and probably find a decent job first.
Six months later I started living at the university I was studying at. About two weeks into my first semester I noticed I was tripping on things a lot more and bumping into people. Turns out that in the span of six months I'd lost about 95% of my vision. I was declared legally blind in October 2016.
I decided I wasn't gonna let that deter me so I started doing O&M and got set up with the CNIB right away. My O&M instructor introduced me to another guy who had gone through a similar thing when he was my age, and he introduced me to blind sports.
I've met a lot of great people through blind sports. Being surrounded by people in various stages of life who have gone through the same thing gave me a really strong sense of community, which I think is really important to adjusting to life with a visual impairment. It's good to have people to talk to who can understand what you're going through, mentor you or offer advice, and even inspire you to do things that you thought you couldn't do without vision.
The most important bit of advice I can give you is: **Don't stop doing what you love.** Chances are good that there are still ways to do it without vision. It's also a good idea to find out if any other visually impaired people share that interest with you. If there isn't a blind version already, you can always make one.
Six months later I started living at the university I was studying at. About two weeks into my first semester I noticed I was tripping on things a lot more and bumping into people. Turns out that in the span of six months I'd lost about 95% of my vision. I was declared legally blind in October 2016.
I decided I wasn't gonna let that deter me so I started doing O&M and got set up with the CNIB right away. My O&M instructor introduced me to another guy who had gone through a similar thing when he was my age, and he introduced me to blind sports.
I've met a lot of great people through blind sports. Being surrounded by people in various stages of life who have gone through the same thing gave me a really strong sense of community, which I think is really important to adjusting to life with a visual impairment. It's good to have people to talk to who can understand what you're going through, mentor you or offer advice, and even inspire you to do things that you thought you couldn't do without vision.
The most important bit of advice I can give you is: **Don't stop doing what you love.** Chances are good that there are still ways to do it without vision. It's also a good idea to find out if any other visually impaired people share that interest with you. If there isn't a blind version already, you can always make one.
AllHarlowsEve 3 points 5y ago
I was 18, totally sighted, getting ready to go to college for art and planning on taking a piercing apprenticeship, possibly a tattooing apprenticeship, within like 2 years.
Instead, in the January after I graduated from high school, I got very sick and started losing vision. ,In a month, I could no longer see my TV or phone. In 2 months, I could no longer read anything, even with it inches from my face and the size of my hand, backlit, etc.
I have a chronic condition called idiopathic intracranial hypertension which is basically when your brain decides to play Tumor Simulator and you end up with too much spinal fluid, and it crushes your brain. Pretty much obliterated my optic nerves and my eyes are shot as well.
So yes, lots of us get what you're going through, and it will get easier.
It's normal to go through the stages of grief, and go back and forth. Shit, sometimes I still catch myself trying to deny or being angry, and I hit acceptance quickly because I was pretty sure I was dying and you accept shit real quick when death seems to be rushing at you.
Instead, in the January after I graduated from high school, I got very sick and started losing vision. ,In a month, I could no longer see my TV or phone. In 2 months, I could no longer read anything, even with it inches from my face and the size of my hand, backlit, etc.
I have a chronic condition called idiopathic intracranial hypertension which is basically when your brain decides to play Tumor Simulator and you end up with too much spinal fluid, and it crushes your brain. Pretty much obliterated my optic nerves and my eyes are shot as well.
So yes, lots of us get what you're going through, and it will get easier.
It's normal to go through the stages of grief, and go back and forth. Shit, sometimes I still catch myself trying to deny or being angry, and I hit acceptance quickly because I was pretty sure I was dying and you accept shit real quick when death seems to be rushing at you.
avrilcusack [OP] 2 points 5y ago
Wow you are literally so strong x I'm sorry you've been through that, I shall take strength from your story and power through! I'm here if you ever want a friendly ear . Thank you for sharing that
AllHarlowsEve 1 points 5y ago
I don't mind sharing. I'm super flippant, so people tend to not take me as seriously, but to me, it's just a part of life. I've been through proverbial hell, grew up being abused in every way a child can be, have an alphabet soup of mental illnesses from it, then all this health shit cropped up.
I still count myself as lucky since I've been in remission for a few years, so not dealing with feeling like my brain's squishing itself for now.
I still count myself as lucky since I've been in remission for a few years, so not dealing with feeling like my brain's squishing itself for now.
usualninja 3 points 5y ago
My story is similar to most people here. Lost my vision over time and now in almost completely blind. I have found that technology, especially the iPhone have been a great help to me and there is a useful app for almost everything out there. Also agree that mindset makes a world of difference. In currently working at by family business and looking after millions of dollars in revenues. A lot of times I feel like my employee's may not respect me due to by disability but then you just have to power through and make yourself mentally strong and do what you have to do. I am always available if anybody wants to talk to be personally or if you need help or advice on dealing with daily challenges. Remember that necessity is the mother of invention, if you put your mind to it there is very little you cannot do
OutWestTexas 3 points 5y ago
My story is similar to everyone here. What helped me the most is when I realized “I am not a blind person, but a person who is blind!” For me that was a psychological turning point. It completely changed my perspective on things. I’m not saying things aren’t hard. I’m just saying I changed the way I think of my challenges.
avrilcusack [OP] 1 points 5y ago
Good point
Terry_Pie 3 points 5y ago
Everyone who has something then loses it goes through the psychological challenge of coming to terms with that loss, regardless of whether it was in an instant or over and extended period of time. For the most part, I'm ok with the degeneration of my sight, but that's not always the case.
It feels worse when you think about what you could do in the past. Three years ago I could read a book no problem, today I can still read books, but I need a desk light, magnification, and I can't read entire words at once. Or when I booted up Heroes of Might and Magic IV the other day and found I couldn't play it because everything just blended into one. People send me gifs and videos? It's just a mess of colour that I have a hard time distinguishing into anything meaningful. Every day it's like my ability to interpret visual information, track objects, and keeping my eyes focused gets worse. And when you live on your own without anyone to bounce that experience off for support, that can eat at you.
You aren't alone, focus on what you can do, don't get hung up on what you can't, and don't be afraid to ask for assistance when you need it.
It feels worse when you think about what you could do in the past. Three years ago I could read a book no problem, today I can still read books, but I need a desk light, magnification, and I can't read entire words at once. Or when I booted up Heroes of Might and Magic IV the other day and found I couldn't play it because everything just blended into one. People send me gifs and videos? It's just a mess of colour that I have a hard time distinguishing into anything meaningful. Every day it's like my ability to interpret visual information, track objects, and keeping my eyes focused gets worse. And when you live on your own without anyone to bounce that experience off for support, that can eat at you.
You aren't alone, focus on what you can do, don't get hung up on what you can't, and don't be afraid to ask for assistance when you need it.
avrilcusack [OP] 1 points 5y ago
That's really good advice there, thank you, I'm sorry you've been through that, I know how it feels honestly, thank you for sharing :)
Ramildo 3 points 5y ago
I'm not currently going through the same situation, but I've been there before as I noticed my vision deteriorate slowly for 3 years until I had no useful vision left due to an uncontrollable glaucoma, and I was in denial during the whole process. I still mourn my loss of sight since I no longer feel in control of my life as little details escape me all the time and everything is extremely error prone.
redstone1337 6 points 5y ago
Have you thought about going to a rehab center? A good stint of independence training works wonders.
Ramildo 0 points 5y ago
I went to rehab right after going blind. It was precisely there that my motivation went downhill once I realized that there was no special magic formula to do things, that from that point forward I would have to accept controlling my life only superficially, and that I would always depend on special accommodations to live.
avrilcusack [OP] 2 points 5y ago
Yes I know how that feels, thank you for sharing your story
I am legally blind from birth, I was told as a child, my vision wouldn't get any worse or any better however as the years went on it did get worse much worse
I was said to only have
Anaridea, myopia and nystagmus but recently I've been told I also have cataracts and glaucoma as Well and I'll be blind completely within the next 10 years, when I went recently again they said that 10 years could be much sooner than expected
, I am having trouble telling what colour is what, and peripheral vision is lost, if you were to put a toilet paper tube to your eye and look through it, that has just more of a vision field that I do,
Everything constantly looks like I'm constantly in a dazy dream in one of those old fashioned movies or like when a camera goes out of focus
I have complete night blindness also and no depth perception.
All of these things and I'm trying to find a job without any help from NDIS
It's almost impossible
I feel so useless and helpless and I'm not the sort of person to be like that, I'm usually really independent and happy go lucky
But when my partner and I had to cut our date night short because the movie we wanted to watch last night didn't have audio description working headphones and they lead me sighted guide to the car to go home it hit me hard
... even leading up to before the movie
We went to the arcade, I couldn't see to play the games, I had a go and tried but it was pretty pointless if I'm honest, or at dinner they had to read the menu to me, because I couldn't see it myself
These things hit me hard all at once last night on our way home
'In never going to be able to be normal, I'm not normal, I'm built for a world that I don't fit in'
It's funny enough that my partner is a disability support worker (that's not how we met) so I'm lucky enough that they understand and support me above and beyond, maybe even more than what I deserve.
And although we had a good time last night I guess I felt bratty for ruining the movie for my s/o , I said we could stay if they wanted but they said they didn't want to watch it if I wouldn't be able to indulge as Well so we went home and cuddled in bed to netflix .
But yeah I guess you could say I'm finding it a bit harder everyday just trying to get my head around it :/
I am legally blind from birth, I was told as a child, my vision wouldn't get any worse or any better however as the years went on it did get worse much worse
I was said to only have
Anaridea, myopia and nystagmus but recently I've been told I also have cataracts and glaucoma as Well and I'll be blind completely within the next 10 years, when I went recently again they said that 10 years could be much sooner than expected
, I am having trouble telling what colour is what, and peripheral vision is lost, if you were to put a toilet paper tube to your eye and look through it, that has just more of a vision field that I do,
Everything constantly looks like I'm constantly in a dazy dream in one of those old fashioned movies or like when a camera goes out of focus
I have complete night blindness also and no depth perception.
All of these things and I'm trying to find a job without any help from NDIS
It's almost impossible
I feel so useless and helpless and I'm not the sort of person to be like that, I'm usually really independent and happy go lucky
But when my partner and I had to cut our date night short because the movie we wanted to watch last night didn't have audio description working headphones and they lead me sighted guide to the car to go home it hit me hard
... even leading up to before the movie
We went to the arcade, I couldn't see to play the games, I had a go and tried but it was pretty pointless if I'm honest, or at dinner they had to read the menu to me, because I couldn't see it myself
These things hit me hard all at once last night on our way home
'In never going to be able to be normal, I'm not normal, I'm built for a world that I don't fit in'
It's funny enough that my partner is a disability support worker (that's not how we met) so I'm lucky enough that they understand and support me above and beyond, maybe even more than what I deserve.
And although we had a good time last night I guess I felt bratty for ruining the movie for my s/o , I said we could stay if they wanted but they said they didn't want to watch it if I wouldn't be able to indulge as Well so we went home and cuddled in bed to netflix .
But yeah I guess you could say I'm finding it a bit harder everyday just trying to get my head around it :/
Terry_Pie 1 points 5y ago
NDIS? You are in Australia? Which state?
avrilcusack [OP] 1 points 5y ago
New south Wales, sydney
Terry_Pie 1 points 5y ago
Ah fair enough, I'm in Adelaide so I don't know what services, groups, or opportunities might be around over there.
blind_intellect 2 points 5y ago
Though I went through some of that was I was young, I've accepted and adapted to my vision loss. I will say that your own limiting beliefs about what you can do is a barrier. Just burst through those barriers and surprise yourself. **~~Do not~~** put it up as a wall and accept it.
I would not be living on my own if those barriers were my stopping point.
I would not be living on my own if those barriers were my stopping point.
silverclaud22 1 points 5y ago
You all are awesome sharing your stories and supporting one another. I have RP, or at least they think it’s RP, it doesn’t present typically. I am legally blind, I would say mostly. I use a white cane when getting around and screen readers because reading myself is taxing.
I agree with what everyone has said here. Sometimes I get really down because of what I can no longer do. It is frustrating and it can be infuriating. Depending on others is one of the most difficult things for me. It makes me feel like a burden. I tell myself that I am not a burden, I am doing other people a favor by depending on them. By helping me they have the opportunity to shine and be a better person than they might be normally and shame on them if they squander that opportunity. Lol
Being accepting and kind to yourself, learning how to advocate for yourself, reaching out for help, and finding the humor in your situation have been the things that have helped me most. I’ll give you an example.
I was in a college class and all the classrooms look the same. I went to the restroom and came back. When I walked in it seemed like the professor had started a powerpoint, but the room wasn’t dark, just quiet. I started down the aisle to my seat and when i turned to enter my row there was a persn in it!! I was in the wrong classroom!!! Before anyone said anything I called out, “Hello, is there anyone in here?” Lol not really. I just turned around and walked out, but when i tell the story to my friends i called out. Funnier that way lol in actuality no one said anything. I had my cane with me so they knew i was visually impaired. In the past I would have beat myself up about making that mistake and creating a spectacle. Now I can find the humor in it. When I share the story my friends come back with their own stories about mistaken classrooms and I realized that sighted people make their own stupid mistakes, it’s not a blind thing it’s a human thing.
Just be patient and more than anything kind to yourself. Try not to compare yourself to your old sighted self it’s completely new terrain and there’s a learning curve. Feel free to reach out if you ever need to talk. That goes for anyone on here.
I agree with what everyone has said here. Sometimes I get really down because of what I can no longer do. It is frustrating and it can be infuriating. Depending on others is one of the most difficult things for me. It makes me feel like a burden. I tell myself that I am not a burden, I am doing other people a favor by depending on them. By helping me they have the opportunity to shine and be a better person than they might be normally and shame on them if they squander that opportunity. Lol
Being accepting and kind to yourself, learning how to advocate for yourself, reaching out for help, and finding the humor in your situation have been the things that have helped me most. I’ll give you an example.
I was in a college class and all the classrooms look the same. I went to the restroom and came back. When I walked in it seemed like the professor had started a powerpoint, but the room wasn’t dark, just quiet. I started down the aisle to my seat and when i turned to enter my row there was a persn in it!! I was in the wrong classroom!!! Before anyone said anything I called out, “Hello, is there anyone in here?” Lol not really. I just turned around and walked out, but when i tell the story to my friends i called out. Funnier that way lol in actuality no one said anything. I had my cane with me so they knew i was visually impaired. In the past I would have beat myself up about making that mistake and creating a spectacle. Now I can find the humor in it. When I share the story my friends come back with their own stories about mistaken classrooms and I realized that sighted people make their own stupid mistakes, it’s not a blind thing it’s a human thing.
Just be patient and more than anything kind to yourself. Try not to compare yourself to your old sighted self it’s completely new terrain and there’s a learning curve. Feel free to reach out if you ever need to talk. That goes for anyone on here.
[deleted] 1 points 5y ago
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