Blind and Visually Impaired Community
↑
37
↓
Just realized I'll be a visualy impaired my whole life (self.Blind)
submitted by TheJsUser
My eyes stopped developing properly a few weeks after I was born. I've had a low visual acuity all my life. I suffer -12 myopia and a pretty noticable nistagmus.
Since I was a kid, my parents always came up with this story, wen I am 20 I could get a surgery, and I'd see just as anyone else. Over the time I let that hope die, tho, every ophthalmologist I attended avoided getting into what my hopes to see better were.
I'm 23 now, and, with so little hope, I decided to go see the doctor who used to treat me when I was a kid, the one who, according to my parents, told them about that miraculous surgery; If there was no surgery in the world that could help me, she'd be the one who tells me.
The appointment was expensive as hell. She locked at me, didn't recognize me of course, it had been over 20 years. She sat me in that freaking chair, made some tests and she realized who I was.
She told me the surgery she mentioned was a refractive surgery, and such treatment would only allow me to see just as I see with my glasses on (wich is not much) no surgery in the word could help me improve my visual acuity.
I went out of that hospital disappointed. Not because of the news I was given, but because of that fantastic story my parents held me my whole life. As a kind, I used to dream of the moment that day came true, and I just realized it was a lie. I'll be visualy impaired my whole life. All my childhood and that tiny hope that remained with me till yesterday, it was all based in a lie.
Since I was a kid, my parents always came up with this story, wen I am 20 I could get a surgery, and I'd see just as anyone else. Over the time I let that hope die, tho, every ophthalmologist I attended avoided getting into what my hopes to see better were.
I'm 23 now, and, with so little hope, I decided to go see the doctor who used to treat me when I was a kid, the one who, according to my parents, told them about that miraculous surgery; If there was no surgery in the world that could help me, she'd be the one who tells me.
The appointment was expensive as hell. She locked at me, didn't recognize me of course, it had been over 20 years. She sat me in that freaking chair, made some tests and she realized who I was.
She told me the surgery she mentioned was a refractive surgery, and such treatment would only allow me to see just as I see with my glasses on (wich is not much) no surgery in the word could help me improve my visual acuity.
I went out of that hospital disappointed. Not because of the news I was given, but because of that fantastic story my parents held me my whole life. As a kind, I used to dream of the moment that day came true, and I just realized it was a lie. I'll be visualy impaired my whole life. All my childhood and that tiny hope that remained with me till yesterday, it was all based in a lie.
blackberrybunny 13 points 2y ago
Don't blame this on your parents.
I am nearly the same as you. I was born too soon. My eyes didn't develop enough. I'm legally blind, my whole life. I'm 52.
My parents told me the same. Because our parents truly only want the best for us. They had hopes and dreams too, that in 20 years, a new medical technology would be created, that could help us.
I was 19 and in college when I went to an eye doctor on campus by myself, who told me the awful truth. I walked home to my dorm room, crying the whole way. I called my mom and dad, and still, they had hopes that one day, a medical miracle might happen.
That was about 30 years ago. My parents only wanted there to be an operation that might help me. We were all wrong.
But you know what? I survived. I've made it 52 years now as a blind person, and I'm ok with that.
You will be too. Don't hold this against your parents.
My best advice is that you get some O&M training, (orientation and mobility training) and independence training, at a learning center for the blind. I went to the Louisiana Center for the Blind when I was in my late 20's, and it changed my life. For the better. It helped me SO much.
You'll be okay. There are so many things that could be so much worse. And just think, we are living in a time now when we do have technology on our sides. When I was at the LCB, we didn't even have the Internet really. It was just being 'born' you could say.....
You will feel despair, but you'll get through it. There is so much to be happy and thankful for.
I am nearly the same as you. I was born too soon. My eyes didn't develop enough. I'm legally blind, my whole life. I'm 52.
My parents told me the same. Because our parents truly only want the best for us. They had hopes and dreams too, that in 20 years, a new medical technology would be created, that could help us.
I was 19 and in college when I went to an eye doctor on campus by myself, who told me the awful truth. I walked home to my dorm room, crying the whole way. I called my mom and dad, and still, they had hopes that one day, a medical miracle might happen.
That was about 30 years ago. My parents only wanted there to be an operation that might help me. We were all wrong.
But you know what? I survived. I've made it 52 years now as a blind person, and I'm ok with that.
You will be too. Don't hold this against your parents.
My best advice is that you get some O&M training, (orientation and mobility training) and independence training, at a learning center for the blind. I went to the Louisiana Center for the Blind when I was in my late 20's, and it changed my life. For the better. It helped me SO much.
You'll be okay. There are so many things that could be so much worse. And just think, we are living in a time now when we do have technology on our sides. When I was at the LCB, we didn't even have the Internet really. It was just being 'born' you could say.....
You will feel despair, but you'll get through it. There is so much to be happy and thankful for.
AlwaysLilly 11 points 2y ago
I remember when lasik came out, I thought I’d get lasik once I was in college or after (it came out when I was in high school around me).
I then learned I have ROP I wasn’t a good candidate which was hard at first. Back then, I didn’t have too many other issues but it was a blow.
I’m sure your parents were going off what they truly thought or thought was best at the time. My family certainly never was told about all the risk factors despite my eye health issues starting at a very young age.
I think besides having a good place to vent like therapy, having a medical team you feel confident with and who will answer your questions is a big help. I know for me, feeling like I understand my procedures and symptoms keeps me from feeling like my vision is just going to fail tomorrow.
I then learned I have ROP I wasn’t a good candidate which was hard at first. Back then, I didn’t have too many other issues but it was a blow.
I’m sure your parents were going off what they truly thought or thought was best at the time. My family certainly never was told about all the risk factors despite my eye health issues starting at a very young age.
I think besides having a good place to vent like therapy, having a medical team you feel confident with and who will answer your questions is a big help. I know for me, feeling like I understand my procedures and symptoms keeps me from feeling like my vision is just going to fail tomorrow.
ThisBlindChickReads 8 points 2y ago
Progress is made every day on rare conditions regarding the eyes. There are scientists and doctors that are working tirelessly for cures that were not even imaginable even 10 years ago. Get set up with a good ophthalmologist ... I know Foundation Firing Blindness and Sofia Sees are 2 foundations that raise funds for research and are great resources to find info. Foundation fighting blindness also has a list of doctors that may have better info for your. As a parent, I can understand hearing news about your child, hearing cure, and unwittingly being numb to the rest of what is said in a doctor's appointment. News that tour or your child's vision is not correctable is hard to take... They may not have been able to process and misunderstood. ... I don't know much about your situation or your patent's but I know that the way I keep hope its staying informed and asking questions often... Oh and seeing a therapist has also been helpful for the mental aspect. ... Best wishes to you.
oldfogey12345 8 points 2y ago
With respect. OP is 23 years old and they have to start living their life with their current vision level in mind.
Everything from education choices, to career choices, to deciding where to live need to be made with current visual acuity in mind.
I love FFB myself but you have to make yourself aware of the particular eye conditions that all that research is going into. Mainly RP, ROP, and some others. The others mainly are the ones that affect the aging population.
OP and myself have a condition where your eyes are abnormally small and not fully developed. Imagine having a right hand the size of an adult and the left hand the size of a newborn.
That makes surgeries risky. Your best case scenario won't help enough to let you drive or even read normally unless your case is extremely mild. They would also have to find a way to correct the fact that your eye muscles never learned to focus properly in childhood. After 5 years of age you lose the ability to naturally learn that. They can't just go in and redesign your whole eye to function properly. I am sure they are trying to figure it out but it's not getting the same funding as RP or other more common conditions.
The big hope here would be to develop robotic eyes that can get something close to 20/20. They have some things going in that direction too. They are not close on that front either though. I think they can take a person from being totally blind to seeing lights and shadows with some shapes as well.
I know you mean well, and I am sure you are doing all the best possible things for your child, but trying to give hope to someone who's condition you don't understand usually is not very helpful and sometimes can be considered impolite.
Edit:Good call on the shrink though. I would personally point OP to a grief counselor. Life becomes emotionally easier when you can come to terms with grieving what you don't have.
Everything from education choices, to career choices, to deciding where to live need to be made with current visual acuity in mind.
I love FFB myself but you have to make yourself aware of the particular eye conditions that all that research is going into. Mainly RP, ROP, and some others. The others mainly are the ones that affect the aging population.
OP and myself have a condition where your eyes are abnormally small and not fully developed. Imagine having a right hand the size of an adult and the left hand the size of a newborn.
That makes surgeries risky. Your best case scenario won't help enough to let you drive or even read normally unless your case is extremely mild. They would also have to find a way to correct the fact that your eye muscles never learned to focus properly in childhood. After 5 years of age you lose the ability to naturally learn that. They can't just go in and redesign your whole eye to function properly. I am sure they are trying to figure it out but it's not getting the same funding as RP or other more common conditions.
The big hope here would be to develop robotic eyes that can get something close to 20/20. They have some things going in that direction too. They are not close on that front either though. I think they can take a person from being totally blind to seeing lights and shadows with some shapes as well.
I know you mean well, and I am sure you are doing all the best possible things for your child, but trying to give hope to someone who's condition you don't understand usually is not very helpful and sometimes can be considered impolite.
Edit:Good call on the shrink though. I would personally point OP to a grief counselor. Life becomes emotionally easier when you can come to terms with grieving what you don't have.
ThisBlindChickReads 3 points 2y ago
I am going to take this as a positive comment and not as you also sounding impolite to me as I decided not to post my entire medical history and don't think I should have had to. But let me try to clear up what may have caused some misunderstanding. I was born with my rare disease that doesn't even have a name yet. My disease presented at the age of 6. So yes , I understand having a brain that never knew what 20/20 was and never will. I also was misdiagnosed and told at a young age that when I was older a surgery could fix me. I even had a doctor laugh at me too when I asked if there was a cure for me. I may not have the same condition, but it doesn't mean that I haven't had the same struggles with adjusting to not driving, losing my career, and having a complete upheaval of my world to only see less and less every day. I may be optimistic for OP and everyone else who finds out that no cure is in the near future (myself included), because I tried the other route in my early 20's and it did not work for me.
I never said my child was going through this, at this point it looks like he did not inherit it. That is another struggle that I have had to work through, raising a child without being able to drive, or help with assignments because I cant' see textbooks or written handwriting is difficult in many ways. But just because something is difficult, doesn't mean it is impossible.
I only wanted to share with OP that people exist in this world that want to help and unintentional breakthroughs happen. I know FFB isn't actively working on a cure that is viable for me but they are working for cures and its been uplifting for me nonetheless. Reaching out to supportive organizations and people has also been beneficial to me.
I hope for the best for all of us ... It is lonely to go through it alone.
I never said my child was going through this, at this point it looks like he did not inherit it. That is another struggle that I have had to work through, raising a child without being able to drive, or help with assignments because I cant' see textbooks or written handwriting is difficult in many ways. But just because something is difficult, doesn't mean it is impossible.
I only wanted to share with OP that people exist in this world that want to help and unintentional breakthroughs happen. I know FFB isn't actively working on a cure that is viable for me but they are working for cures and its been uplifting for me nonetheless. Reaching out to supportive organizations and people has also been beneficial to me.
I hope for the best for all of us ... It is lonely to go through it alone.
TheJsUser [OP] 3 points 2y ago
Thanks s lot
oldfogey12345 5 points 2y ago
I have been through a similar situation.
My mom just kept doubling down after I found out the truth too. That's normal.
It's going to be impossible to see now, but your mom made a pretty common parenting mistake. Yes, very damaging and painful, but as much as you feel it right now, almost certainly not a betrayal.
So, I found out the truth of my situation at 16 or so and was a wreck. Anytime the subject came up for year's and years after that my mom kept trying to give me 'hope.' Sometime in my 30's I finally just mentally threw up my hands, laughed a little, and told her I had a job and a life and am too old to even refigure out how to live my life even if the miracle cure did come around.
Neither the miracle cure, nor the subject being brought up happened again.
My mom just kept doubling down after I found out the truth too. That's normal.
It's going to be impossible to see now, but your mom made a pretty common parenting mistake. Yes, very damaging and painful, but as much as you feel it right now, almost certainly not a betrayal.
So, I found out the truth of my situation at 16 or so and was a wreck. Anytime the subject came up for year's and years after that my mom kept trying to give me 'hope.' Sometime in my 30's I finally just mentally threw up my hands, laughed a little, and told her I had a job and a life and am too old to even refigure out how to live my life even if the miracle cure did come around.
Neither the miracle cure, nor the subject being brought up happened again.
kamarian91 1 points 1y ago
Do you have high myopia? What is your prescription?
oldfogey12345 1 points 1y ago
Blood vessels in my corneas. Way past 20/200
rose_moons 5 points 2y ago
I have myopia at -24.5 and the day I found out surgery to correct it was an option for I couldn’t stop crying.
[deleted] 5 points 2y ago
[deleted]
MostlyBlindGamer 3 points 2y ago
I sounds like they could have misunderstood the doctor.
SqornshellousZ 3 points 2y ago
I am 41 now. Same conditions; Cogenital Nystagmus (horrizontal). Had the surgery as a baby because stretching the eye muscles was the only option to have any vision at all. I still have the condition it is just much less obvoous. It was rarely proformed and still very new in the 80s. If you can see, it's likely the opthamologist didn't believe the preceedure would appreciably dampen the movememt of your eye muscles.
It is very rare to have, as we both do, nystagmus. as the main limiting issue without a more signifigant ailment. Most people with nystagmus are near totally blind.
Have you tried contact instead of glasses. The eye movement causes added distortion with glasses?
You're welcome to DM me.
It is very rare to have, as we both do, nystagmus. as the main limiting issue without a more signifigant ailment. Most people with nystagmus are near totally blind.
Have you tried contact instead of glasses. The eye movement causes added distortion with glasses?
You're welcome to DM me.
niamhweking 3 points 2y ago
Sorry to hear that, while I understand why your parents did it, I believe it causes more harm than good. I can't offer advice really. But there are plenty of support groups and depending on where you live there is help out there
macadamia_owl 2 points 2y ago
Some might think "oh it's like Santa Claus lie so you would have better childhood they meant well for you" but truth comes out sooner or later and leaves scar in trus. Giving false hope in health condition is way much worse, it holds down the development and planing of future life.
Luckily my eye doctor an retired eye surgeon from best country clinic with lot's of experience "educated me" often more than my parents (they ordered positive thinking and false hope yet when it gone downhill they stopped that approach), when i was "wise enough" started asking questions about my eyes and was at certain age (i think i was teen). He asked for my parents to leave exam room. He asked if I know what my eye condition is and explained in simple words what it is what can but don't have to happen, answered my questions (i could finally freely ask everything no parents interrupting us :) ) he repeated that from time to time or if i asked for private talk. I'm really grateful i knew i could go blind from ROP that it was possible, when it happened in one eye it was end of the world for years still but i knew how to proceed because i had prepared a notebook "What to do if i go blind" many years beforehead. I did O&M, switched school to more accessible (not for blind) and finished it, taken care of mental health and hobbies later.
If i would stick to "someday a miracle surgery after 21 yo when eye stops growing", "medicine will come up with something"... II would make no plan B for case "if my Plan A fails" - the life with better vision I would be fully unprepared, living fully with false hope making plans based on that i will see better: future educated, job choice, living place. Thanks to my eye doc i knew early it could go really wrong and i was better prepared.
Since certain age everyone has right to know full details and prognosis of their health status/condition and not telling truth, giving false hope is kind of cruel and bad to this person. It doesn't make situation any better giving false hope better is just telling like my eye doc said:
"As for now there's no treatment or cure, surgery to fix it. Yet it may or not happen in 5, 10 next year's we don't know that today but for now be prepared for today and tomorrow. Know your health and have Plan B Just in case"
I recently saw interesting webinar abused eye surgeries history development, innovations, new techniques from USA there were professors from leading university clinics. In terms of refractive surgery/laser/meds it advanced alot but retina surgery a specialist admitted since 50 years succes rate of vision/retina attachment rates/overall success there's almost no improvements and no new techniques to save vision. It depends on what you surfer sadly: if it's genetic, glaucoma, retina, cancer then chances are much worse even for future.
Luckily my eye doctor an retired eye surgeon from best country clinic with lot's of experience "educated me" often more than my parents (they ordered positive thinking and false hope yet when it gone downhill they stopped that approach), when i was "wise enough" started asking questions about my eyes and was at certain age (i think i was teen). He asked for my parents to leave exam room. He asked if I know what my eye condition is and explained in simple words what it is what can but don't have to happen, answered my questions (i could finally freely ask everything no parents interrupting us :) ) he repeated that from time to time or if i asked for private talk. I'm really grateful i knew i could go blind from ROP that it was possible, when it happened in one eye it was end of the world for years still but i knew how to proceed because i had prepared a notebook "What to do if i go blind" many years beforehead. I did O&M, switched school to more accessible (not for blind) and finished it, taken care of mental health and hobbies later.
If i would stick to "someday a miracle surgery after 21 yo when eye stops growing", "medicine will come up with something"... II would make no plan B for case "if my Plan A fails" - the life with better vision I would be fully unprepared, living fully with false hope making plans based on that i will see better: future educated, job choice, living place. Thanks to my eye doc i knew early it could go really wrong and i was better prepared.
Since certain age everyone has right to know full details and prognosis of their health status/condition and not telling truth, giving false hope is kind of cruel and bad to this person. It doesn't make situation any better giving false hope better is just telling like my eye doc said:
"As for now there's no treatment or cure, surgery to fix it. Yet it may or not happen in 5, 10 next year's we don't know that today but for now be prepared for today and tomorrow. Know your health and have Plan B Just in case"
I recently saw interesting webinar abused eye surgeries history development, innovations, new techniques from USA there were professors from leading university clinics. In terms of refractive surgery/laser/meds it advanced alot but retina surgery a specialist admitted since 50 years succes rate of vision/retina attachment rates/overall success there's almost no improvements and no new techniques to save vision. It depends on what you surfer sadly: if it's genetic, glaucoma, retina, cancer then chances are much worse even for future.
1BlindNinja 1 points 2y ago
Hey, I get the disappointment, but never let being blind hold you back. I lost my sight completely at 22 years old. I’m now 47, fo I miss my sight? Absolutely. Do I let it stop me doing what I want to do? Not at all. Grab a hold of life and all it has to offer, enjoy every moment of it, and never let anyone or anything hold you down. 💓 💓 💓
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.