Blind and Visually Impaired Community
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Feeling disheartened (self.Blind)
submitted by MaybeSuicidalRaptor
Latterly I've noticed my vision is on the fritz and getting worse. I have Ushers so a loss of both sight and hearing.
I just became a mom to a absolutely beautiful girl and i want to visually watch her grow. My vision is like a overlay of flickering noise from tv that also blurs shone details.
The only way i can read these days is white on black and who knows how long that will last... I miss reading regular print.
I've been thinking, what's one thing i want to see before many vision goes to shit... I want to see the Grand Canyon.
I've seen many wonderful sights growing up but not that one. Many regent is not seeing the Milky Way when i starved a lot as a kid as i was never told you could faintly see the galaxy. but i might hacer a skit as seeing Saturn or Jupiter. Oh and northern lights, i want to see that on a cloudless night.
I did get to watch ISS going across the dusk sky. That was cool.
That's all i wanted to say off my chest. Thanks for reading
I just became a mom to a absolutely beautiful girl and i want to visually watch her grow. My vision is like a overlay of flickering noise from tv that also blurs shone details.
The only way i can read these days is white on black and who knows how long that will last... I miss reading regular print.
I've been thinking, what's one thing i want to see before many vision goes to shit... I want to see the Grand Canyon.
I've seen many wonderful sights growing up but not that one. Many regent is not seeing the Milky Way when i starved a lot as a kid as i was never told you could faintly see the galaxy. but i might hacer a skit as seeing Saturn or Jupiter. Oh and northern lights, i want to see that on a cloudless night.
I did get to watch ISS going across the dusk sky. That was cool.
That's all i wanted to say off my chest. Thanks for reading
-shacklebolt- 1972 points 6y ago
Going blind was easily the worst part about being blind to me. I'll share some of my experience in a way that I hope might help you.
The actual process of losing your sight is kind of terrible, or at least it was in my experience. You know what's happening, but maybe not when and not how bad it might end up. What if you're one of the lucky cases right? Or what if it happens soon and you're not ready?
You find out you're losing your sight, and it's gotten to the point where you can't do things exactly the way you used to. You get a low vision evaluation and start to use low vision tools. You start to integrate these "low vision" things into your life. High contrast and magnification for everything! They become less and less useful, and you try to upgrade to more expensive and fancy gadgets in the hope it'll give you a little more time, and you're left going "fuck, I don't actually know how to be blind." Meanwhile the (well intentioned, but misguided) people around you will probably be encouraging you to "make the most of your remaining sight."
You become a little (or a lot) convinced that at some point, if these tools fail you, you're not going to be able to keep doing the things you love.
You start to fall out of love with reading because it's hard to keep up (but maybe at the same time convince yourself that you aren't "blind enough" to read braille yet,) you go out less and less because you aren't confident traveling when it's dark or bright or new places. You start to visit friends less and less, because they don't really know what to do with you (and more so since in your case (not mine) you're deaf because shit is there a cultural barrier to cross between blind communities that involve a lot of sound, and Deaf communities that involve a lot of sight.)
You're so angry about it all because it feels like everything about the only world you've ever known, an intensely visual world, is being torn from you in piece by piece and you don't feel like you have any control over the process.
You lose the sky and the grass and the trees, the beautiful details on your loved one's faces, the special looks that were just for you, mundane normal things like being able to read a menu or a street sign, and you can see just enough and are still so attached to the visual world that what you can't see tempts you all the time.
I don't know where you are in your process, but maybe one day you realize that the zoomtext and the CCTV and the monocular and all those things are really doing sweet fuck all for you and that perhaps one day you're going to turn them off for the last time and never turn them back on again (if you haven't already.) You start to learn braille and make a commitment to studying every day, use a screen reader, maybe get more lessons on actually using your cane properly (from an instructor who isn't a middle aged sighted woman trying to spend an excessive amount of time teaching you sighted guide and "self protective" techniques before giving you a heavy folding monstrosity of a cane that is so short you're terrified of walking too quickly with it, and many of you all in /r/blind/ know exactly the sort of instructor I'm talking about) instead of the half-hearted "only sometimes" you've been giving it before. You learn how to cook, clean, and change diapers with the lights off. You probably get yourself some therapy or support because you need help digging yourself out of the emotional hole you were stuck in where it felt like nothing would ever get better and life would never be normal. (And since you're deaf, you maybe start using tactile sign language instead of visual, or learning sign language in the first place.) And if you get the right tools and training, suddenly you like to read again, and traveling isn't scary anymore, and keeping a job doesn't seem impossible, and you start to want to be around people again (and maybe they're different people because some people in your life just won't get it.)
It stops feeling like losing more vision is a hammer that's hanging over your head all the time. It stops feeling like life's going to just stop when you reach the point of being "too blind." You stop feeling like you're not "blind enough," stuck in between. (This has little to do with your actual remaining amount of vision. It's a matter of adaptation.)
And maybe you lose more vision quickly, or maybe it happens slowly, but something really remarkable happens over time: you start to forget some of the visual details, sometimes a lot of them. That's terrifying and triggers it's own crisis at first, because you don't want to forget the way your husband looks at you or your child (or loved one's) smile or the way the Grand Canyon looks, right? You don't want to be THAT blind! You want to remember all those beautiful details!
But more and more as time passes, thinking about your husband draws up details like the way he smells when he's relaxed (and that's your favorite, although you know what stressed and sick and tired smell like too), his skin (the practical parts you touch all the time like his hands and elbows, and the parts that you love like the wrinkles on his face) and the way his breathing feels, his heartbeat, the way he walks, the way he talks to you, the way it feels to hold him.
And you start to build these new pictures of the world with everyone and everything around you, and your loved ones are going to be this great big picture of touch and smell and sound and experiences, and sure you will always want to see them but it doesn't fucking matter because you will still have them and love them.
And in increments that are sometimes very small and sometimes very large, if you get what you need to carry on with your life, you stop mourning the sight you had. You stop mourning the person that you were. It's hard to describe.
To me, going blind was a process with somewhat distinct stages: Before, when I was sighted. During, when I was partially sighted and stuck in between clinging to the sighted parts and mourning and scared. After, where I am now (which is independent of where you are on the vision loss spectrum or where you might end up.)
I'm not sure that the person I was "before" and "during" is exactly the same person I am now. The things that I thought would always matter so much to me barely even register.
If I close my eyes and imagine I can see the Grand Canyon in my head. It isn't vivid (and probably not accurate) anymore. If I went back there I could still see some, as I still have some usable vision. But the details? They're already gone, and in their place with every new place I visit and every new adventure I go on is a whole maze of other sensory inputs and emotions and experiences.
It did suck. It sucked for a long time, and for me it sucking less involved "deciding" to let go the emotional baggage that came with having "low vision" and that damn it all, I was going to figure out being blind. At the end of the bucket list of beautiful things I wanted to see one last time came the realization that one day it wouldn't hurt me to not see those things.
Sometimes it still sucks. Sometimes you hit enough roadblocks in a world that's built for sighted people that you hate it. But mostly it doesn't, and mostly you're okay. (And really, were it not for my involvement with the blind community, I don't actually think about being blind all that often in my day to day life. It registers closer to "mildly inconvenient trait" than "tragedy.")
I'm not saying that your experiences will be like mine at all! What I am trying to say is that your perspective shifts with time and experience and distance, and what you're feeling about being blind now probably isn't going to be what you're feeling about being blind in five years or ten years.
And you'll be okay. We'll be here for you if you need to rant to people who get it, help figuring something out, or someone to just cheer you on and tell you (from experience) that you can do it.
The actual process of losing your sight is kind of terrible, or at least it was in my experience. You know what's happening, but maybe not when and not how bad it might end up. What if you're one of the lucky cases right? Or what if it happens soon and you're not ready?
You find out you're losing your sight, and it's gotten to the point where you can't do things exactly the way you used to. You get a low vision evaluation and start to use low vision tools. You start to integrate these "low vision" things into your life. High contrast and magnification for everything! They become less and less useful, and you try to upgrade to more expensive and fancy gadgets in the hope it'll give you a little more time, and you're left going "fuck, I don't actually know how to be blind." Meanwhile the (well intentioned, but misguided) people around you will probably be encouraging you to "make the most of your remaining sight."
You become a little (or a lot) convinced that at some point, if these tools fail you, you're not going to be able to keep doing the things you love.
You start to fall out of love with reading because it's hard to keep up (but maybe at the same time convince yourself that you aren't "blind enough" to read braille yet,) you go out less and less because you aren't confident traveling when it's dark or bright or new places. You start to visit friends less and less, because they don't really know what to do with you (and more so since in your case (not mine) you're deaf because shit is there a cultural barrier to cross between blind communities that involve a lot of sound, and Deaf communities that involve a lot of sight.)
You're so angry about it all because it feels like everything about the only world you've ever known, an intensely visual world, is being torn from you in piece by piece and you don't feel like you have any control over the process.
You lose the sky and the grass and the trees, the beautiful details on your loved one's faces, the special looks that were just for you, mundane normal things like being able to read a menu or a street sign, and you can see just enough and are still so attached to the visual world that what you can't see tempts you all the time.
I don't know where you are in your process, but maybe one day you realize that the zoomtext and the CCTV and the monocular and all those things are really doing sweet fuck all for you and that perhaps one day you're going to turn them off for the last time and never turn them back on again (if you haven't already.) You start to learn braille and make a commitment to studying every day, use a screen reader, maybe get more lessons on actually using your cane properly (from an instructor who isn't a middle aged sighted woman trying to spend an excessive amount of time teaching you sighted guide and "self protective" techniques before giving you a heavy folding monstrosity of a cane that is so short you're terrified of walking too quickly with it, and many of you all in /r/blind/ know exactly the sort of instructor I'm talking about) instead of the half-hearted "only sometimes" you've been giving it before. You learn how to cook, clean, and change diapers with the lights off. You probably get yourself some therapy or support because you need help digging yourself out of the emotional hole you were stuck in where it felt like nothing would ever get better and life would never be normal. (And since you're deaf, you maybe start using tactile sign language instead of visual, or learning sign language in the first place.) And if you get the right tools and training, suddenly you like to read again, and traveling isn't scary anymore, and keeping a job doesn't seem impossible, and you start to want to be around people again (and maybe they're different people because some people in your life just won't get it.)
It stops feeling like losing more vision is a hammer that's hanging over your head all the time. It stops feeling like life's going to just stop when you reach the point of being "too blind." You stop feeling like you're not "blind enough," stuck in between. (This has little to do with your actual remaining amount of vision. It's a matter of adaptation.)
And maybe you lose more vision quickly, or maybe it happens slowly, but something really remarkable happens over time: you start to forget some of the visual details, sometimes a lot of them. That's terrifying and triggers it's own crisis at first, because you don't want to forget the way your husband looks at you or your child (or loved one's) smile or the way the Grand Canyon looks, right? You don't want to be THAT blind! You want to remember all those beautiful details!
But more and more as time passes, thinking about your husband draws up details like the way he smells when he's relaxed (and that's your favorite, although you know what stressed and sick and tired smell like too), his skin (the practical parts you touch all the time like his hands and elbows, and the parts that you love like the wrinkles on his face) and the way his breathing feels, his heartbeat, the way he walks, the way he talks to you, the way it feels to hold him.
And you start to build these new pictures of the world with everyone and everything around you, and your loved ones are going to be this great big picture of touch and smell and sound and experiences, and sure you will always want to see them but it doesn't fucking matter because you will still have them and love them.
And in increments that are sometimes very small and sometimes very large, if you get what you need to carry on with your life, you stop mourning the sight you had. You stop mourning the person that you were. It's hard to describe.
To me, going blind was a process with somewhat distinct stages: Before, when I was sighted. During, when I was partially sighted and stuck in between clinging to the sighted parts and mourning and scared. After, where I am now (which is independent of where you are on the vision loss spectrum or where you might end up.)
I'm not sure that the person I was "before" and "during" is exactly the same person I am now. The things that I thought would always matter so much to me barely even register.
If I close my eyes and imagine I can see the Grand Canyon in my head. It isn't vivid (and probably not accurate) anymore. If I went back there I could still see some, as I still have some usable vision. But the details? They're already gone, and in their place with every new place I visit and every new adventure I go on is a whole maze of other sensory inputs and emotions and experiences.
It did suck. It sucked for a long time, and for me it sucking less involved "deciding" to let go the emotional baggage that came with having "low vision" and that damn it all, I was going to figure out being blind. At the end of the bucket list of beautiful things I wanted to see one last time came the realization that one day it wouldn't hurt me to not see those things.
Sometimes it still sucks. Sometimes you hit enough roadblocks in a world that's built for sighted people that you hate it. But mostly it doesn't, and mostly you're okay. (And really, were it not for my involvement with the blind community, I don't actually think about being blind all that often in my day to day life. It registers closer to "mildly inconvenient trait" than "tragedy.")
I'm not saying that your experiences will be like mine at all! What I am trying to say is that your perspective shifts with time and experience and distance, and what you're feeling about being blind now probably isn't going to be what you're feeling about being blind in five years or ten years.
And you'll be okay. We'll be here for you if you need to rant to people who get it, help figuring something out, or someone to just cheer you on and tell you (from experience) that you can do it.
Akujinnoninjin 150 points 6y ago
Absolutely beautiful response.
Interestingly, I found myself nodding in agreement to it with regards to how I approached my *mental* health problems: I had the exact same experience where there was a frustrating "inbetween" period where I knew I had PTSD and yet I was still trying to force myself to act like nothing was wrong, exacerbating everything.
I think that's the real killer - you need to force yourself to accept that, on a deep level, *Things Have Changed Now*. It's incredibly hard, but makes such a huge difference to your ongoing mental health.
You stop looking at yourself as a failure, listing all the things you "used to" - or worse: "ought to" - be able to do, and start looking at what you're *going* to do. Constantly beating yourself up over your perceived inadequacies is a straight shot to depression
Of course, this is all easier written than done. It took me a lot of support and a couple of breakdowns to figure this out, and I'm *still* learning to put it into practice.
Interestingly, I found myself nodding in agreement to it with regards to how I approached my *mental* health problems: I had the exact same experience where there was a frustrating "inbetween" period where I knew I had PTSD and yet I was still trying to force myself to act like nothing was wrong, exacerbating everything.
I think that's the real killer - you need to force yourself to accept that, on a deep level, *Things Have Changed Now*. It's incredibly hard, but makes such a huge difference to your ongoing mental health.
You stop looking at yourself as a failure, listing all the things you "used to" - or worse: "ought to" - be able to do, and start looking at what you're *going* to do. Constantly beating yourself up over your perceived inadequacies is a straight shot to depression
Of course, this is all easier written than done. It took me a lot of support and a couple of breakdowns to figure this out, and I'm *still* learning to put it into practice.
-shacklebolt- 23 points 6y ago
> you need to force yourself to accept that, on a deep level, Things Have Changed Now
Absolutely. You can't just keep doing things the way you used to, and praising yourself when you can, and hating yourself when you can't. It's a big fucking emotional leap.
Glad you made it.
Absolutely. You can't just keep doing things the way you used to, and praising yourself when you can, and hating yourself when you can't. It's a big fucking emotional leap.
Glad you made it.
IMurderPotatoes 7 points 6y ago
> praising yourself when you can, and hating yourself when you can't.
One of my biggest mindset changes was that I was doing good *for me*. I shouldn't hold myself to the standards of fully capable people, I needed to base my standards on what I could do, and how hard I tried to do it.
One of my biggest mindset changes was that I was doing good *for me*. I shouldn't hold myself to the standards of fully capable people, I needed to base my standards on what I could do, and how hard I tried to do it.
lawnmowerparades 12 points 6y ago
Impostor Syndrome at its finest. It's amazing how difficult it is for people to adapt to new conditions, even with a supportive community. So often we fail to allow ourselves to be accepted by our new confidants and friends, sometimes even our old ones. I've had my own struggles with mental illness, though, luckily for me, not as severe as it could have been. I'm sorry for your struggles, and OP's too. I know, by this point, you all must be sick and tired of hearing it, but I am. I'm sorry. Not because I think it's my fault, or because I think I could fix it, but because the fact that such suffering can exist in our world is saddening, and the fact that I *can't* fix it fills me with sorrow.
Fare well, stranger. As long as you're learning, you've won.
Fare well, stranger. As long as you're learning, you've won.
asshair 6 points 6y ago
> You stop looking at yourself as a failure, listing all the things you "used to" - or worse: "ought to" - be able to do, and start looking at what you're going to do. Constantly beating yourself up over your perceived inadequacies is a straight shot to depression
>
Different mental health issue. But YES, this a million times yes. I've only recently begun making an effort to not compare myself to my "old self" who (I think) was more capable and smarter and better and happier. I've stopped trying to force myself to do "what the old me would have done" and just act in a way that feels right. And I've stopped making those comparisons that focus on my inadequacies, or what I've lost, and just focus on the road ahead for the guy I am now.
Thanks for the comment, I can really relate. It's nice to know that I'm not the only one.
>
Different mental health issue. But YES, this a million times yes. I've only recently begun making an effort to not compare myself to my "old self" who (I think) was more capable and smarter and better and happier. I've stopped trying to force myself to do "what the old me would have done" and just act in a way that feels right. And I've stopped making those comparisons that focus on my inadequacies, or what I've lost, and just focus on the road ahead for the guy I am now.
Thanks for the comment, I can really relate. It's nice to know that I'm not the only one.
Nibiria 2 points 6y ago
I know we're strangers but I really need advice, I'm tired all the time after doing minimal things (starts when I wake up but gets worse the more I do each day) and it makes me irritable and has sent me into a horrible depression. I'm hoping it gets better but I don't know what to do if it doesn't.
It doesn't feel like I can DO anything and I'm not quite sure how to cope with that. I've had some sort of depression my whole life, but then it was more...I COULD do anything, I just didn't want to. Now I want to and can't. I'm not coping with it well. At all.
It doesn't feel like I can DO anything and I'm not quite sure how to cope with that. I've had some sort of depression my whole life, but then it was more...I COULD do anything, I just didn't want to. Now I want to and can't. I'm not coping with it well. At all.
Akujinnoninjin 4 points 6y ago
For me, at least, that tiredness and need to not do anything turned out to not be what I thought. When I really looked at it I found it wasn't that I wanted to sleep so much as I wanted to not be awake - I was trying to avoid life.
I found other avoidance symptoms would spike with me too - I got lost in World of Warcraft or in Reddit.
Two things have helped me with that. The first is medication: I eventually cycled around to one that seems to knock most of my anxieties on the head, and that raises my baseline enough that i have the will to push myself again.
The second was diagnosis (and acceptance) of ADHD. I needed to adjust my response to my depression to take into account that - to ELI5 - my brain needs constant stimulation or it gets sad and wants to sleep until life is more interesting. This explained one of the major mechanisms in my brain that was nuking my mood.
I don't know if I have advice - I honestly don't think I'm qualified. But I hope my thought processes will help. And let you know you aren't alone feeling like this. And that it can, and will, get better.
I found other avoidance symptoms would spike with me too - I got lost in World of Warcraft or in Reddit.
Two things have helped me with that. The first is medication: I eventually cycled around to one that seems to knock most of my anxieties on the head, and that raises my baseline enough that i have the will to push myself again.
The second was diagnosis (and acceptance) of ADHD. I needed to adjust my response to my depression to take into account that - to ELI5 - my brain needs constant stimulation or it gets sad and wants to sleep until life is more interesting. This explained one of the major mechanisms in my brain that was nuking my mood.
I don't know if I have advice - I honestly don't think I'm qualified. But I hope my thought processes will help. And let you know you aren't alone feeling like this. And that it can, and will, get better.
Nibiria 2 points 6y ago
I have ADHD and depression and meds haven't really helped for the past decade and change...so it's really annoying. Like they used to kinda work when I was growing up. But now, not so much.
It's been thirteen years as of 6 days ago. And it has shown no signs of getting better. I just want to be able to sit down and watch a show or stream or something without having to be doing multiple other things.
It's been thirteen years as of 6 days ago. And it has shown no signs of getting better. I just want to be able to sit down and watch a show or stream or something without having to be doing multiple other things.
furry_slippers 33 points 6y ago
This made me cry like a baby. I have a medical condition that leaves open the possibility that I will go blind. It's not imminent, but my eyesight is worse each year and each time I have to go to the doctor, I stress over what he'll tell me. Reading this gave me more comfort than you can imagine. Thank you.
chubbsatwork 5 points 6y ago
Diabetic here. I'll most likely be blind within 10 years (or as soon as 6 months), according to my doctors. I haven't taken great care of myself in the 24 years I've had diabetes, and at this point I've accepted the fact that if I lose my sight, it's my fault, but I'll make the best of it.
TotesMessenger 19 points 6y ago
GratefullyGodless 18 points 6y ago
40 years ago, an eye doctor told me that I would be blind by the time I was 21 after I lost half the vision in my left eye. I didn't go blind, but the idea had terrified me ever since. But, your wonderful, powerful essay has made the fear abate for the first time ever. For 40 years I've had this fear whispering in my brain, but now because of you, it is silent. Thank you for bringing some peace to a long time fear.
-shacklebolt- 9 points 6y ago
Damn. Glad I could help.
doreato 15 points 6y ago
I've had a fear of going blind ever since I could think of it. Not saying it's gone, but if it ever happens this will surely help calm me down. Thank you.
Saucy_Apples 12 points 6y ago
You made me cry in a Canadian Tim Hortons at Calgarys first snowfall while a lovey song from my high school days played and it was sappy and sad and beautiful
deenmeister 11 points 6y ago
This is the most beautiful thing I've ever read.. Thank you for it..
gorkt 9 points 6y ago
This was one of the most profound personal stories I have read. You should really consider being a writer.
I think it is an experience that many people can relate to of adjustment to new realities, and how you can shift your perceptions to find the world beautiful in other ways.
I think it is an experience that many people can relate to of adjustment to new realities, and how you can shift your perceptions to find the world beautiful in other ways.
wildtrk 8 points 6y ago
Thank you...my father (78) is slowly going blind due to macular degeneration and is also slowly going deaf. It is not a pleasant experience to witness from the other side and reading this helps me a little to understand it from his side. Again, thank you.
MushinZero 3 points 6y ago
Read this to him
blondonblond1 7 points 6y ago
I'm also going blind and I'm beyond scared and feel very alone. I was contemplating suicide but reading your response made me feel less alone and I don’t think I’m going to do it now.
-shacklebolt- 8 points 6y ago
Well I am really humbled. If you ever need a listening ear or a hand up, you have this subreddit and you have me. Reach out any time you want to talk. Your life matters and I promise that you can do this.
Savonlinna 7 points 6y ago
>You lose the sky
Probably because I love astrophysics, this made me tear up. Shit, man. I'm going through losing the love of my life right now, and it's hell, but.. Hell.. I'm so very thankful that I still have the sky. Thank you dearly, for one of the better pieces I've read in a long while.
Probably because I love astrophysics, this made me tear up. Shit, man. I'm going through losing the love of my life right now, and it's hell, but.. Hell.. I'm so very thankful that I still have the sky. Thank you dearly, for one of the better pieces I've read in a long while.
Leprecon 12 points 6y ago
My partner was with me in the Attacama desert. We were stargazing with a group of people. This is the best place on planet earth to see the stars. The sky is so clear you can actually see the white clouds of the milky way. This is the kind of shit you normally only see in pictures with special cameras or edited pictures. I didn't even know you could see it with the naked eye.
I will admit, the white clouds of the milky way were faint, but they were there. Along with those white clouds, the entire sky was lit up. Little lights absolutely everywhere. The whole crowd was enjoying the show. An amateur astronomer was talking to us about what we could see. Which star is what, what constelation is where.
My partner was there too. She could see 4 stars... no wait, 5 counting that one in the distance. While everyone was ooh-ing and aah-ing she realised something. She already lost the stars. She didn't even notice it. Yeah, she could still see a couple if she really tried, but does that even count? Sure, she could look up a picture online and see them, and technically she could still see a couple of stars.
This will be one of many things she will lose. There couldn't have been a worse place to lose it, in a crowd of amazed tourist in the best place in the world to see stars. She had a long thought about what she lost and what she will lose, but to have those thoughts amongst an ecstatic crowd of ooh-ing stargazers enjoying the visual spectacle was a bit too much.
So we went back to our hotel, woke up the next morning, and went on a vineyard tour. We can still look at grapes together, for now.
I will admit, the white clouds of the milky way were faint, but they were there. Along with those white clouds, the entire sky was lit up. Little lights absolutely everywhere. The whole crowd was enjoying the show. An amateur astronomer was talking to us about what we could see. Which star is what, what constelation is where.
My partner was there too. She could see 4 stars... no wait, 5 counting that one in the distance. While everyone was ooh-ing and aah-ing she realised something. She already lost the stars. She didn't even notice it. Yeah, she could still see a couple if she really tried, but does that even count? Sure, she could look up a picture online and see them, and technically she could still see a couple of stars.
This will be one of many things she will lose. There couldn't have been a worse place to lose it, in a crowd of amazed tourist in the best place in the world to see stars. She had a long thought about what she lost and what she will lose, but to have those thoughts amongst an ecstatic crowd of ooh-ing stargazers enjoying the visual spectacle was a bit too much.
So we went back to our hotel, woke up the next morning, and went on a vineyard tour. We can still look at grapes together, for now.
MaybeSuicidalRaptor [OP] 6 points 6y ago
This is an incredible post and very encouraging. I was thinking, what words could there be to encourage?
This is. I'm saving it
This is. I'm saving it
-shacklebolt- 3 points 6y ago
Thank you very much.
I mean it when I say (for what it's worth from a stranger on the internet) that I'm here for you if you want to talk about anything, now and in the future.
I mean it when I say (for what it's worth from a stranger on the internet) that I'm here for you if you want to talk about anything, now and in the future.
slap_thy_ass 6 points 6y ago
> And in increments that are sometimes very small and sometimes very large, if you get what you need to carry on with your life, you stop mourning the sight you had. You stop mourning the person that you were. It's hard to describe.
well, i think you did a pretty fucking amazing job of describing it. thank you for sharing this. incredible to read.
well, i think you did a pretty fucking amazing job of describing it. thank you for sharing this. incredible to read.
kidnemo 6 points 6y ago
Wow. This was great. Thank you, so, so much.
silchi 5 points 6y ago
> And you start to build these new pictures of the world with everyone and everything around you, and your loved ones are going to be this great big picture of touch and smell and sound and experiences, and sure you will always want to see them but it doesn't fucking matter because you will still have them and love them.
This is beautiful. Really, truly beautiful. I think your comment as a whole could be comforting and encouraging to anyone, regardless of what kind of struggle or hardship or life-changing event they or a loved one are going through. Thank you.
This is beautiful. Really, truly beautiful. I think your comment as a whole could be comforting and encouraging to anyone, regardless of what kind of struggle or hardship or life-changing event they or a loved one are going through. Thank you.
cookiemanluvsu 5 points 6y ago
Wow. This should be handed out to people transitioning into being blind.
El_Tigre_818 4 points 6y ago
Thank you for your post. I am a low vision doctor and you have given me a better insight into what happens when I can't help my parents anymore. I really do try to prepare my patients for what can happen next while trying to enable them to utilize the vision they still have. As you know, it's a complex and difficult process.
-shacklebolt- 1 points 6y ago
[Here is an excellent article on the topic.]
(https://nfb.org/images/nfb/publications/bm/bm06/bm0610/bm061005.htm)
I am not at all opposed to people being given the tools of low vision or the training on how to use them. But I do feel that these tools are often times suggested when a non-visual alternative would be more efficient, that patients are often encouraged to rely on them beyond a reasonable scope of their usefulness, and that many patients receiving low vision services do not get (or are sometimes even discouraged from getting) independence training such as cane travel because of often flawed assumptions about what constitutes "visually impaired enough" to benefit from it.
I'm absolutely not saying you're guilty of any of this, just speaking in general terms. To me, "effective" low vision services means they are administered by a provider who understands the skills people of all vision levels may use, understands the benefits to those skills at various levels of vision, and makes recommendations based on what will best help that person efficiently and effectively accomplish tasks now and in the future. It also means a better transition between the "low vision" provider and the "blindness" provider and a lack of stigma (or the idea that the person has "progressed" and is "worse off") when a non-visual technique is apparently the better option now, or will probably soon be for that person.
You're right, it's complex and difficult. As someone who is legally blind (and who previously had low vision better than the "legal blindness" criteria) I'm not sure how I feel about the extent of low vision services for legally blind (or nearly so) people as it stands now. It's much less ambiguous with someone who has stable 20/80 vision versus someone who has fluctuating 20/200. There is a benefit, but when it is poorly applied there are also great risks to that person's functioning, independence, and their emotional adaptation.
(https://nfb.org/images/nfb/publications/bm/bm06/bm0610/bm061005.htm)
I am not at all opposed to people being given the tools of low vision or the training on how to use them. But I do feel that these tools are often times suggested when a non-visual alternative would be more efficient, that patients are often encouraged to rely on them beyond a reasonable scope of their usefulness, and that many patients receiving low vision services do not get (or are sometimes even discouraged from getting) independence training such as cane travel because of often flawed assumptions about what constitutes "visually impaired enough" to benefit from it.
I'm absolutely not saying you're guilty of any of this, just speaking in general terms. To me, "effective" low vision services means they are administered by a provider who understands the skills people of all vision levels may use, understands the benefits to those skills at various levels of vision, and makes recommendations based on what will best help that person efficiently and effectively accomplish tasks now and in the future. It also means a better transition between the "low vision" provider and the "blindness" provider and a lack of stigma (or the idea that the person has "progressed" and is "worse off") when a non-visual technique is apparently the better option now, or will probably soon be for that person.
You're right, it's complex and difficult. As someone who is legally blind (and who previously had low vision better than the "legal blindness" criteria) I'm not sure how I feel about the extent of low vision services for legally blind (or nearly so) people as it stands now. It's much less ambiguous with someone who has stable 20/80 vision versus someone who has fluctuating 20/200. There is a benefit, but when it is poorly applied there are also great risks to that person's functioning, independence, and their emotional adaptation.
El_Tigre_818 2 points 6y ago
I fully agree with you.
MauledByPorcupines 4 points 6y ago
When you talk about visual memories being replaced with new ones from other senses, I wonder if that's the experience of neural adaptation taking place, where other senses get stronger to compensate. After all, the goal of all of your senses is to take "information" from the world and get a clear channel from that into higher cognition, so as you go blind it's like first you're "starving" for information, because the information channel is too noisy, but then when the compensation happens suddenly the signal to noise ratio drops way down and you now get a new volley of information that your brain wasn't equipped to handle before.
psiphre 4 points 6y ago
what kinds of tv shows and movies are easiest for blind people to enjoy?
echowoodsong 6 points 6y ago
Netflix is doing incredible things with audio descriptions these days!
I would recommend watching the first episode of Daredevil with the audio descriptions. It's a show about a character who is blind, so having the two things interact was really interesting to me.
I would recommend watching the first episode of Daredevil with the audio descriptions. It's a show about a character who is blind, so having the two things interact was really interesting to me.
[deleted] 3 points 6y ago
[deleted]
-shacklebolt- 3 points 6y ago
Sure. Could you run the edit by me in a private message first? Thanks
IHaveAFunnyName 3 points 6y ago
This is so beautiful. My son has low vision that can improve to functional vision, and may have a generic condition that can cause blindness. I have been so upset thinking that we may improve his vision only for it to be stolen away. You made it sound hard, but so beautiful at the same time with how the other senses adapt. And a "mildly inconvenient trait", well, I suppose we can deal with that. I have to remember to be grateful for everything we do have and I guess make peace with the unknown.
-shacklebolt- 2 points 6y ago
Check out the [national organization of parents of blind children.]
(http://nopbc.org) Name aside they are an excellent resource and support venue for parents of children with low vision as well. Your positive attitude about his potential no matter his vision makes a huge difference on the rest of his life, and there's a lot of people out there who want to help you and your son have the best possible life.
(http://nopbc.org) Name aside they are an excellent resource and support venue for parents of children with low vision as well. Your positive attitude about his potential no matter his vision makes a huge difference on the rest of his life, and there's a lot of people out there who want to help you and your son have the best possible life.
IHaveAFunnyName 1 points 6y ago
Thank you! We are working with TVIs and OMs and I think we are a part of that organization but I will definitely look into it. I appreciate your help. :)
[deleted] 3 points 6y ago
[deleted]
Red9inch 2 points 6y ago
I have MS, and one of my first symptoms was going blind in one eye. I have since regained mostly normal sight, mostly. There are just enough issues to remind me every now and then that I may not always be so lucky. Of all the things about this disease that scare me, or should, going blind has always been one of the biggest.
Thank you for this.
Thank you for this.
ObscureRefence 1 points 6y ago
I went blind in one eye, and three doctors jumped straight to MS. I've already been slowly losing vision in both eyes from a different disorder, so I was more afraid of losing control of myself than of more blindness. You get used to what you have, and you're scared of the unknown. (I didn't have MS, and several highly uncomfortable procedures later I'm getting my vision back to my previous level of crappy.)
Red9inch 2 points 6y ago
Glad you've got back some sight back. Here's to our new realities huh?
dopamineheights 2 points 6y ago
That was beautiful.
Thankyou
Thankyou
Alnilam_1993 2 points 6y ago
People actually smell different when they're relaxed, stressed or tired? I never would have thought...
-shacklebolt- 4 points 6y ago
I only notice this with my partner, I think. I am super familiar with him compared to other people of course.
Jherden 1 points 6y ago
did you know that fear smells like piss? /j
Alnilam_1993 1 points 6y ago
Haha, that, or like crap, but even as a seeing person, I can smell that. I have no clue how 'relaxed' smells (other than like weed)
phidya 2 points 6y ago
Thank you for this. My step-mom had triple bypass not to long ago. She had a stroke during this time and it greatly reduced her vision. She's the sort of person who likes to work and do things all the time. So when this happened it was, and still is devastating to her. She's a dog groomer, and she likes to drive all over so this is hitting her very hard. I shared your post on facebook with her, hoping that it may give her some hope.
-shacklebolt- 3 points 6y ago
Is she getting the training she needs? Is she getting some kind of emotional support like therapy? Having the right tools (and being surrounded by the right mindset) is crucial.
phidya 1 points 6y ago
To be honest, she is in a rural/suburban part of Kentucky. I don't think she's getting any of that really. She's gone back to church and that seems to help her, but I'm not sure if they can actually help her find independence again. That's the part that worries me the most. That is something important to her.
-shacklebolt- 2 points 6y ago
No matter where she is these resources are available. If she isn't already, she needs to sign up with her state's department of vocational rehabilitation. (Depending on her age, your state's senior services may provide some of the funding, but it depends.)
They may be able to send people to her home to provide her rehabilitation services, or training through local or statewide training centers (which unfortunately vary quite a bit in attitude and quality of instruction, do your research!) She also can chose (using her state's VR) to attend a residential training program at a center like [Blind INC, ]
(https://www.blindinc.org/) or the [Colorado Center for the Blind]
(http://coloradocenterfortheblind.org/) or the [Louisiana Center for the Blind]
(http://www.louisianacenter.org/) even though she does not live in these states. All of these are very reputable and known for a positive attitude and comprehensive education. The CCB has a very informative [video]
(https://www.youtube.com/watch?v=k1GLQmSWTGc) on their youtube channel about what their students learn.
If she has enough useful remaining vision, she can also receive a low vision evaluation and get tools that can help her better use the vision she does have. This should be combined with training on independent living however, as tools without skills is not a complete picture.
A few resources that can help:
Her local [National Federation of the Blind]
(http://www.nfbofky.org/) chapter can help find and access local resources, navigating and advocating for yourself with government programs, and many other things. Her state has an "at large" chapter with phone meetings if none are local to her.
There is a free [national library service]
(https://www.loc.gov/nls/what.html) for people who are blind or visually impaired (or otherwise unable to read regular print.) This includes braille and audio books sent by mail as well as downloaded online. [Bookshare]
(https://www.bookshare.org/cms) charges a membership fee but also offers many books in braille and audio.
How is she accessing a computer, and is she struggling with it? There are many tools that can make this easier. I can provide a better suggestion if I know what her phone, computer, etc situation is right now. How severe (and what kind) is her vision loss? How far post-stroke is she? If she is able to (or will be able to, with the right tools) use a smartphone, there are many tools that can help her travel, read things, and many other tasks.
[Newsline]
(https://nfb.org/audio-newspaper-service) will read a qualifying print-disabled person hundreds of newspapers and magazines over the phone for free.
The [Hadley]
(http://www.hadley.edu/showCourseListing.asp?program=ACE) institute for the blind and visually impaired offers a large range of correspondence courses for adults in audio, braille, large print, electronic document, and many other formats. Among them are many braille, independent living, and technology courses.
If she is legally blind (or profoundly visually impaired due to the nature of her stroke), a cane and training on how to use it can greatly improve her independence if she does not have one yet. The NFB will [send her one for free]
(https://nfb.org/free-cane-program) although you need to buy and replace the [tips]
(https://ecommerce.nfb.org/asp/product.asp?product=18&cat=2&ph=&keywords=&recor=&SearchFor=&PT_ID=) regularly. Select a cane that is at least as tall as her shoulders. The text [the care and feeding of the long white cane]
(https://nfb.org/images/nfb/publications/fr/fr15/issue1/f1501tc2.html) is an excellent introduction to independent cane travel, although she should still get an instructor to work with her as well. (A friend should come with her as she practices in the beginning and would be very helpful, but this does not replace good quality qualified instruction.) You can also purchase a variety of different canes and independent living products [at the NFB store.]
(https://ecommerce.nfb.org/asp/default.asp) (Some people prefer [Ambutech]
(https://ambutech.com/Distributors) canes as well. Go with the graphite one if so, as it is the lightest.)
There is also a simple [at home book, which is free]
(https://ecommerce.nfb.org/asp/product.asp?product=758&cat=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) with accompanying tape or CD to begin to learn braille independently as an adult. Again, she should also seek the instruction of a qualified instructor, but there is no reason not to begin learning in the mean time if she is able.
Well that's a couple of things, but if there's specific issues she's having or resources you're looking for I would be happy to try to help further or point you in the right direction.
They may be able to send people to her home to provide her rehabilitation services, or training through local or statewide training centers (which unfortunately vary quite a bit in attitude and quality of instruction, do your research!) She also can chose (using her state's VR) to attend a residential training program at a center like [Blind INC, ]
(https://www.blindinc.org/) or the [Colorado Center for the Blind]
(http://coloradocenterfortheblind.org/) or the [Louisiana Center for the Blind]
(http://www.louisianacenter.org/) even though she does not live in these states. All of these are very reputable and known for a positive attitude and comprehensive education. The CCB has a very informative [video]
(https://www.youtube.com/watch?v=k1GLQmSWTGc) on their youtube channel about what their students learn.
If she has enough useful remaining vision, she can also receive a low vision evaluation and get tools that can help her better use the vision she does have. This should be combined with training on independent living however, as tools without skills is not a complete picture.
A few resources that can help:
Her local [National Federation of the Blind]
(http://www.nfbofky.org/) chapter can help find and access local resources, navigating and advocating for yourself with government programs, and many other things. Her state has an "at large" chapter with phone meetings if none are local to her.
There is a free [national library service]
(https://www.loc.gov/nls/what.html) for people who are blind or visually impaired (or otherwise unable to read regular print.) This includes braille and audio books sent by mail as well as downloaded online. [Bookshare]
(https://www.bookshare.org/cms) charges a membership fee but also offers many books in braille and audio.
How is she accessing a computer, and is she struggling with it? There are many tools that can make this easier. I can provide a better suggestion if I know what her phone, computer, etc situation is right now. How severe (and what kind) is her vision loss? How far post-stroke is she? If she is able to (or will be able to, with the right tools) use a smartphone, there are many tools that can help her travel, read things, and many other tasks.
[Newsline]
(https://nfb.org/audio-newspaper-service) will read a qualifying print-disabled person hundreds of newspapers and magazines over the phone for free.
The [Hadley]
(http://www.hadley.edu/showCourseListing.asp?program=ACE) institute for the blind and visually impaired offers a large range of correspondence courses for adults in audio, braille, large print, electronic document, and many other formats. Among them are many braille, independent living, and technology courses.
If she is legally blind (or profoundly visually impaired due to the nature of her stroke), a cane and training on how to use it can greatly improve her independence if she does not have one yet. The NFB will [send her one for free]
(https://nfb.org/free-cane-program) although you need to buy and replace the [tips]
(https://ecommerce.nfb.org/asp/product.asp?product=18&cat=2&ph=&keywords=&recor=&SearchFor=&PT_ID=) regularly. Select a cane that is at least as tall as her shoulders. The text [the care and feeding of the long white cane]
(https://nfb.org/images/nfb/publications/fr/fr15/issue1/f1501tc2.html) is an excellent introduction to independent cane travel, although she should still get an instructor to work with her as well. (A friend should come with her as she practices in the beginning and would be very helpful, but this does not replace good quality qualified instruction.) You can also purchase a variety of different canes and independent living products [at the NFB store.]
(https://ecommerce.nfb.org/asp/default.asp) (Some people prefer [Ambutech]
(https://ambutech.com/Distributors) canes as well. Go with the graphite one if so, as it is the lightest.)
There is also a simple [at home book, which is free]
(https://ecommerce.nfb.org/asp/product.asp?product=758&cat=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) with accompanying tape or CD to begin to learn braille independently as an adult. Again, she should also seek the instruction of a qualified instructor, but there is no reason not to begin learning in the mean time if she is able.
Well that's a couple of things, but if there's specific issues she's having or resources you're looking for I would be happy to try to help further or point you in the right direction.
wandamaximoff2point0 1 points 10m ago
A little late to the party but this response made me tear up. So beautifully written.
Kiss_My_Axe12 1 points 1y ago
I stumbled to this subreddit somehow and I’m not even Blind, but that was the most beautiful, well written thing I’ve read in a while. Thank you.
DanniSmile 1 points 6y ago
I started losing my vision a year ago and we have no real answers as to why. It has gone much more quickly than I, or any of the doctors, anticipated. I went from being able to do everything unaffected, to feeling like I can't do anything at all. In the last 3 months I've gone from being able to do my job with some magnification, and by just recognizing letter shapes, to nothing helping and my job kindly trying to phase me out (I'm an auditor and the job very much relays on sight). This week I broke down and bought an iPhone because I heard that it was better for accessibility.. but honestly even using those features hasn't helped much. I keep fighting using voice features and screen readers. I don't want people to think I'm just giving up. I've stopped reading, painting, crocheting, photography, using the internet. It all just seems pointless right now. The thing is, I know that things will get better. I know eventually I will adapt and learn. But I always feel like it's "too soon."
My husband sent me this post because it explains fully the process I have experienced. The frustration is accurate.
I haven't grieved it. I've tried to remain positive for the sake of my kids, and for my family who tells me that being upset will just show what poor character you have. But honestly I hate this. I didn't anticipate being this young and losing sight. I had plans to SEE the world. I put it off when I was younger because I thought I'd have time to do it when I was older. I had everything planned. And now I have to figure out and learn how to be blind and do everything that way before I can even begin to think about the future. I hate having to explain it. I hate having people tell me they're sorry. I hate that my husband has had to put up with all the appointments and having to do more than he should in our relationship. I hate that my kids are so upset over this, and that they have questions about this that I don't know. I hate feeling like trying to adapt is giving up. Because I know it isn't. But those around me tell me it is. And it's frustrating. Ugh. Sorry for the text wall. I just haven't been able to vent about it.
My husband sent me this post because it explains fully the process I have experienced. The frustration is accurate.
I haven't grieved it. I've tried to remain positive for the sake of my kids, and for my family who tells me that being upset will just show what poor character you have. But honestly I hate this. I didn't anticipate being this young and losing sight. I had plans to SEE the world. I put it off when I was younger because I thought I'd have time to do it when I was older. I had everything planned. And now I have to figure out and learn how to be blind and do everything that way before I can even begin to think about the future. I hate having to explain it. I hate having people tell me they're sorry. I hate that my husband has had to put up with all the appointments and having to do more than he should in our relationship. I hate that my kids are so upset over this, and that they have questions about this that I don't know. I hate feeling like trying to adapt is giving up. Because I know it isn't. But those around me tell me it is. And it's frustrating. Ugh. Sorry for the text wall. I just haven't been able to vent about it.
-shacklebolt- 1 points 6y ago
No worries about the venting.
Are you seeing a therapist to deal specifically with the vision loss right now? Sometimes local organizations that serve blind individuals have therapists with experience helping people adjust to a disability as well, and this can be immensely helpful when approaching the issue.
Are you getting the adaptive services and training you need? You definitely *can* still work, read, crochet, photograph, use your phone, and use the internet. But it isn't fair of anyone to expect it to come naturally to you in a day.
> But those around me tell me it is.
Fuck them. Right now, these are the circumstances you are in. And that sucks, I get it, it really fucking sucks in the beginning.
But you can make it. And those plans you have, they can wait a year for you to get the training and get the emotional support that you need in order to adapt to very changed circumstances.
If you need help or just need to talk, I'm available.
Are you seeing a therapist to deal specifically with the vision loss right now? Sometimes local organizations that serve blind individuals have therapists with experience helping people adjust to a disability as well, and this can be immensely helpful when approaching the issue.
Are you getting the adaptive services and training you need? You definitely *can* still work, read, crochet, photograph, use your phone, and use the internet. But it isn't fair of anyone to expect it to come naturally to you in a day.
> But those around me tell me it is.
Fuck them. Right now, these are the circumstances you are in. And that sucks, I get it, it really fucking sucks in the beginning.
But you can make it. And those plans you have, they can wait a year for you to get the training and get the emotional support that you need in order to adapt to very changed circumstances.
If you need help or just need to talk, I'm available.
Falandorn 1 points 6y ago
Wow that was a real roller coaster!
jfm2143 1 points 6y ago
I just wanted to thank you for writing this up.
I am in the very beginning stages of this myself and related quite a lot to your post. I've been quietly terrified and I took incredible comfort in your words.
I am in the very beginning stages of this myself and related quite a lot to your post. I've been quietly terrified and I took incredible comfort in your words.
-shacklebolt- 1 points 6y ago
Thank you so much for your comment. If you ever want to talk, I'll listen (and so will this whole sub, for that matter.) You're not alone in this at all.
spinferno 1 points 6y ago
That was one of the most moving posts I've ever read on reddit.
You sound like a thoughtful, appreciative and empathetic person. Thank you for your beautiful contribution.
You sound like a thoughtful, appreciative and empathetic person. Thank you for your beautiful contribution.
Xsythe 1 points 6y ago
/r/bestof
usefulbuns 1 points 6y ago
I'm 23 and I have RP (thankfully it looks like CRISPR is going to bail me out pretty soon here as of January's news) and the stage I'm in right now which is on the cusp of losing my ability to drive is extremely frightening. I feel like I can't go on with life. What if I can't get my retinas fixed? What will life be like? I've always been very independent, the the outdoors and it's many beautiful landscapes are something I feel like I cannot stand losing.
I can't relate to what it's like to just accept it, and be okay with what it will be like if I do go blind. It's really brutal and I have depression because of it. I wish I could have your attitude, but right now that's not the case. I don't want to be a burden to anybody else, I don't want to lose my independence, I don't want to lose the ability to see my girlfriend's face, my mother's, my sisters', my father's, all my loved ones....
I hope one day you can get your vision back. Best of luck to you
I can't relate to what it's like to just accept it, and be okay with what it will be like if I do go blind. It's really brutal and I have depression because of it. I wish I could have your attitude, but right now that's not the case. I don't want to be a burden to anybody else, I don't want to lose my independence, I don't want to lose the ability to see my girlfriend's face, my mother's, my sisters', my father's, all my loved ones....
I hope one day you can get your vision back. Best of luck to you
-shacklebolt- 1 points 6y ago
> thankfully it looks like CRISPR is going to bail me out pretty soon here as of January's news
AFAIK, some gene repair was seen in extremely limited small scale research. Not miraculous vision recovery. Promising research is not an imminent cure.
> if I do go blind
Most people with RP will become legally blind by middle age. The question is "when" not "if."
> What will life be like?
That's an excellent question to ask, and there are a lot of blind people around who can answer it for you. It's not as scary or as difficult as you seem to be imagining right now.
> I've always been very independent, the the outdoors and it's many beautiful landscapes are something I feel like I cannot stand losing.
There is absolutely no reason why you must lose your independence, sense of wonder at the world, or your ability to travel if you are blind. Hiking, camping, and traveling the world are all completely possible if you are blind.
> and be okay with what it will be like if I do go blind.
Part of that comes from a totally understandable place of being angry and scared at losing something that you have. But part of it is also probably a product of fear and misinformation about what life as a blind person will actually be like.
> I don't want to be a burden to anybody else
I am not a burden on anyone. Many blind people are not burdens on anyone. When they are, it is often due to either that person (or their family) not being educated on the real potential of a blind person and that person not being given the training they need to be independent, or because the blind person is very depressed and not ready to be independent.
> I don't want to lose my independence
You don't have to! At every step in this transition there are new skills you can learn to keep working, continue enjoying an active life, enjoy recreational activities, have relationships, start a family, and most other things you might want to do.
And if that seems impossible or scary, now's the time you can look into the independence training available to blind people, the adaptive skills we use, and the lives we lead.
> I hope one day you can get your vision back.
I don't. The depression that you're feeling? It's way fucking more crippling than blindness. Some blind people (especially those who lose their sight beyond childhood) become consumed with the idea that life's over if there's no cure. They can tell you every bit of relevant research for their condition, they're holding out all sorts of hope that the cure is going to come soon, and in the mean time they've completely convinced themselves that there's no possible life worth living as a blind person. They just stop, mope around, and wait for things to "go back" to the way they were with "the cure."
It ruins lives. Sometimes they get past this, and sadly sometimes they don't. "Hope" can be this deeply destructive thing when what you're hoping for is something entirely out of your control.
Yes, I hope the cure one day comes for you. But I also hope that if it doesn't, or if it isn't here for a decade or two or five, you get the help that you need to be lifted out of your depression. I hope that your life doesn't stop in the mean time because you're convinced you'll be cured soon, or that there's no other way to carry on if you aren't. I hope that you get the help and tools you need to live as a confident and capable blind person and that you aren't paralyzed by the reality you live in now (where there is no cure.)
I do not hope for my own cure, because I know how dangerous and paralyzing that can be. If it comes one day, great. But I need to operate as though it will not, and live the life I have now.
AFAIK, some gene repair was seen in extremely limited small scale research. Not miraculous vision recovery. Promising research is not an imminent cure.
> if I do go blind
Most people with RP will become legally blind by middle age. The question is "when" not "if."
> What will life be like?
That's an excellent question to ask, and there are a lot of blind people around who can answer it for you. It's not as scary or as difficult as you seem to be imagining right now.
> I've always been very independent, the the outdoors and it's many beautiful landscapes are something I feel like I cannot stand losing.
There is absolutely no reason why you must lose your independence, sense of wonder at the world, or your ability to travel if you are blind. Hiking, camping, and traveling the world are all completely possible if you are blind.
> and be okay with what it will be like if I do go blind.
Part of that comes from a totally understandable place of being angry and scared at losing something that you have. But part of it is also probably a product of fear and misinformation about what life as a blind person will actually be like.
> I don't want to be a burden to anybody else
I am not a burden on anyone. Many blind people are not burdens on anyone. When they are, it is often due to either that person (or their family) not being educated on the real potential of a blind person and that person not being given the training they need to be independent, or because the blind person is very depressed and not ready to be independent.
> I don't want to lose my independence
You don't have to! At every step in this transition there are new skills you can learn to keep working, continue enjoying an active life, enjoy recreational activities, have relationships, start a family, and most other things you might want to do.
And if that seems impossible or scary, now's the time you can look into the independence training available to blind people, the adaptive skills we use, and the lives we lead.
> I hope one day you can get your vision back.
I don't. The depression that you're feeling? It's way fucking more crippling than blindness. Some blind people (especially those who lose their sight beyond childhood) become consumed with the idea that life's over if there's no cure. They can tell you every bit of relevant research for their condition, they're holding out all sorts of hope that the cure is going to come soon, and in the mean time they've completely convinced themselves that there's no possible life worth living as a blind person. They just stop, mope around, and wait for things to "go back" to the way they were with "the cure."
It ruins lives. Sometimes they get past this, and sadly sometimes they don't. "Hope" can be this deeply destructive thing when what you're hoping for is something entirely out of your control.
Yes, I hope the cure one day comes for you. But I also hope that if it doesn't, or if it isn't here for a decade or two or five, you get the help that you need to be lifted out of your depression. I hope that your life doesn't stop in the mean time because you're convinced you'll be cured soon, or that there's no other way to carry on if you aren't. I hope that you get the help and tools you need to live as a confident and capable blind person and that you aren't paralyzed by the reality you live in now (where there is no cure.)
I do not hope for my own cure, because I know how dangerous and paralyzing that can be. If it comes one day, great. But I need to operate as though it will not, and live the life I have now.
usefulbuns 1 points 6y ago
-shacklebolt- 2 points 6y ago
> "Here we have demonstrated that the initial steps are feasible."
does not mean that the cure is just around the corner, and it also doesn't mean that you can't live the life you want if it isn't.
does not mean that the cure is just around the corner, and it also doesn't mean that you can't live the life you want if it isn't.
oh_no_aliens 1 points 6y ago
You are inspiring.
offensieve 1 points 6y ago
If she is going blind and deaf, she needs to learn Braille now.
Is there any way to learn Braille otherwise?
I guess people could hand her wooden letters
Is there any way to learn Braille otherwise?
I guess people could hand her wooden letters
FishyWulf 1 points 6y ago
That sinking dread, that your body is betraying you is also how it feels to lose your hair at twenty. I mean, not on the same level.
ItsReallyMeSid 1 points 6y ago
Holy shit
fennesz 1 points 6y ago
Great post. Thanks.
nycefm 5 points 6y ago
Op, we are hear for you and will help you through this time in your life.
claudettemonet 4 points 6y ago
http://www.ryanknighton.com/cmonpapa.html
http://m.thisamericanlife.org/radio-archives/episode/464/invisible-made-visible?act=0
Ryan Knighton went blind at 18. He wrote a book called _Cockeyed_ about going blind as a teenager, and he also wrote a book called _Come On Papa_ about being a blind parent. As someone who is going blind and still planning on having kids, hearing his stories have really helped me. I love his attitude about everything. He is very funny about a topic that is usually so devastating and sad.
If you are looking more for just a simple acknowledgement that this just sucks, and the deeply personal and intimate ways it sucks, I would check out John Hull the Australian theologian, who went blind in adulthood and kept a recorded diary. His diary was the inspiration and audio for the short film "Notes on Blindness." For more information on John Hull there is this link http://www.notesonblindness.co.uk/about-john/
http://m.thisamericanlife.org/radio-archives/episode/464/invisible-made-visible?act=0
Ryan Knighton went blind at 18. He wrote a book called _Cockeyed_ about going blind as a teenager, and he also wrote a book called _Come On Papa_ about being a blind parent. As someone who is going blind and still planning on having kids, hearing his stories have really helped me. I love his attitude about everything. He is very funny about a topic that is usually so devastating and sad.
If you are looking more for just a simple acknowledgement that this just sucks, and the deeply personal and intimate ways it sucks, I would check out John Hull the Australian theologian, who went blind in adulthood and kept a recorded diary. His diary was the inspiration and audio for the short film "Notes on Blindness." For more information on John Hull there is this link http://www.notesonblindness.co.uk/about-john/
MaybeSuicidalRaptor [OP] 2 points 6y ago
So reading those. Thank you!
claudettemonet 2 points 6y ago
Sure :)
KillerLag 4 points 6y ago
Sorry to hear that your vision is getting worse. It sucks that things are getting worse. Unfortunately, there often isn't anything we can do about it. You may not be able to see your daughter growing up, but that doesn't mean you can't still be there for her. A coworker of mine lost his vision before having kids, so he's never seen his three daughters before. But still, he was one of the best fathers I know.
dourk 3 points 6y ago
If you do make the trip to see the Grand Canyon, also go a just a few hours south to see Sedona. They complement each other wonderfully!
MaybeSuicidalRaptor [OP] 1 points 6y ago
Thanks will do!!
ExtraAwesomeUserName 2 points 6y ago
Remember, medicine is getting better and better. Not only you but a lot of visually impaired people will be able to restore their vision in the near future. Blindness will be cured, just like deafness. Just try not to lose hope. There's a lot of people trying to help visually impaired people like you.
Well_you_see 2 points 6y ago
This post gave me a lump in my throat. I'm not, nor am I close to anyone who has a vision impairment (I came here from best of), but the way you described your struggle to accept life changes that were being forced upon you, and your final acceptance, is really inspiring. Thank you.
[deleted] 2 points 6y ago
[deleted]
MaybeSuicidalRaptor [OP] 1 points 6y ago
That is so adorable. Thank you
jcobmc 1 points 6y ago
L
Yoshi_The_Dino 1 points 6y ago
Do you also happen to have retinitis pigmentosa?
I have the same conditions bud...
I have the same conditions bud...
MaybeSuicidalRaptor [OP] 1 points 6y ago
I do have rp
ObscureRefence 2 points 6y ago
Well, you can always become a $1 (The main character was a cop but had to retire because of RP. It's also a cheesy Lifetime TV show.)
MaybeSuicidalRaptor [OP] 1 points 6y ago
This sound sounds a fun read! Added to shopping list to buy when i can
[deleted] 1 points 6y ago
[removed]
claudettemonet 1 points 6y ago
Me too!
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