IAmA 31 year old female. Born blind in one eye, with other eye problems.

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Thank you! Well I was playing around with my neighbors and we were throwing stuffed animals at each other and I guess it got my eye. After I went upstairs and sat down all of a sudden everything just went dark. I couldn't see. And I started freaking out. When my parents took my to the doctor, I don't know the formal term but I guess there was blood in my eye that they had to go in and remove through surgery. But I got to stay home from school for like a month.

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Thanks. Well the right eye i got cleared up at the time. That lasted about a month or so. I've been blind in the left eye since birth. So I've always just had to rely on my right eye. I've been able to see fine, albeit not 20/20. I have glasses, but they don't help much.

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Lol I like both men and women. And yes, relationships have been difficult, especially first impressions. Especially when the first thing people do is see your face. It's different if you have like a missing toe or a mole on your back. Its the fact that its my face, my eyes, the biggest way people connect is through looking into each other eyes. I mean, I'm a romantic. And thank you for your kind words. I only recently developed glaucoma. All throughout my adolescence I was never diagnosed with anything internal with my eye.
Then in my 20s a cataract formed but I didn't know because I couldn't see out of it anyway. Just the way it looked was noticeable.

Hey I just found your post and I found it rather relatable. I lost vision in my right when I was 12, and have to deal with the same asymmetry. Since then i have needed to take drops daily to keep the eye pressure low.

I'm glad you can relate. Did your vision ever come back in your eye? Yeah drops are okay, but kind of irritating lol

If you would like to know the formal term, it is vitreous hemorrhage :). I’m so glad it was something treatable and you were able to regain vision!!

How does that differ from a hyphema?

A hyphema occurs in the anterior chamber (between cornea and iris), whereas a vitreous hemorrhage occurs in the vitreous chamber (between lens and retina). You can sometimes see a hyphema with the naked eye (blood pools in anterior chamber, and you can see it towards the bottom in front of the iris, or, in severe cases it can cover the entire iris and pupil). A vitreous hemorrhage you can’t see without looking through the pupil.

I’d happily take a hyphema over a hypopyon any day, though.

Edit: Posterior Chamber to Vitreous Chamber

That's interesting. No one has ever mentioned anything about hyphema

Thanks. Yeah me too

Kids can be little devills some times. But I dont think you should be self conscious, first thing I tought when I have seen your photo was "wow,she's cute".

How is your depth perception?

Thank you! I'm not sure how depth perception works exactly. But I'm sure mine sucks because I have to be super up close to see or read anything. And I'll run into things if I'm no careful, like if it's out of my visual field. I also need people to stand my right side because I can't even see them if they're talking lol. Same with being in a car with someone. I have to do a total 180 head turn to see them.

I meant if you want to grab things or put things somewhere,how hard is it to judge how far something is from you?

Oh. I find if I'm looking and standing close enough I can judge the distance. But sometimes I'll feel really dumb and be clumsy like I'll step off a curb because I didn't realize I wasn't close enough to land properly, or I'll take a drink of something and completely miss my mouth. But that happens when I'm completely not paying attention.

Dealing with depth perception. There is a lot of illusions that deal with monocular vision. It’s something film exploits somewhat frequently.

Here is a video of a stationary paper cut out that appears to move based on your movement. It only works if you close one eye though or watch through a camera like this video. https://youtu.be/pXvMeupScTs

You can print one off and try it yourself. https://www.thinkfun.com/wp-content/uploads/2014/10/Dragon-Illusion-BBC.pdf

Edit: dunno if it’s cool to just post on a AmA thread...

That's cool. I'll check it out. Yeah its hard when I have to close one eye. It sucked in school when the teacher does the vision test "Close this eye and tell me what you see" " now close this eye and tell me what you see"

Do you catch people staring at your estotropia often? If so, how does it make you feel?

I ask because I’ve always noticed that things like that catch my attention when I don’t mean to pay them special attention. It’s always hard to know whether you avoiding something makes someone more uncomfortable, or just noting it and not being weird about it.

You’re lovely, by the way.

Awe thank you so much! Well always at first when I talk to someone they will either stare at it, or do the "look over the shoulder and back at me thing, and not know I'm talking to them and just not say a word" and then I get super uncomfortable like yeah I know my eyes are confusing. It's especially hard when I'm trying to talk to a cute person. Ha. Most people get used to it and focus on my good eye when talking. Or just act completely normal, which is nice. I've seen a few other people with a lazy eye. Not sure if I have a form of lazy eye. But it can be hard at first because it is apparent.

So, I’m gathering that the best thing is to just be normal and neither avoid, nor go out of my way to unnecessarily acknowledge?

I find that's a good approach for me, personally. I can't speak for other people. And only a select few have asked me about it, or just said it was cool. Which is also actually nice. But I think a lot of people want to feel loved and accepted. So it's especially difficult when someone is already self-conscious and aware of themselves, because for me, if someone on the outside looking in can treat me like I'm not an alien, I feel a little less isolated from humanity. Sorry for the rant, ha.

Have you looked into Laser Surgery to remove the clouded lens?

Laser surgery removes the lens without any incision, and far less risk of retinal detachment. I had it done, and after that, my doctor inserted a new lens.

You'd probably need big thick glasses, but you would have clear vision.

I had mine done in San Diego by Dr. Sandy Feldman. Might be worth a call. Very few doctors have the laser, as it is very expensive. Surgery was not more expensive than a normal cataract surgery. Feel free to DM me if you want more details.

Thank you!

My dad is blind in one eye and visually impaired in the other - he had a brain tumor that severed the optic nerve. It's been about 5 years now of this so we've been able to adjust as a family to help him.

What sorts of things have you found most helpful for your family or roommates to do for you?

Also, have you found any cool tech that's been helpful? My dad has supported some Kickstarter stuff but not all of it has come to fruition.

That's awesome about the Kickstart stuff. I haven't really delved into the tech side of things but it's something I'd be curious about. Technology is advancing a lot these days!

I'm sorry to hear about your dad. My dad actually lost sight in his left eye last year due to age or something.

I'm scared of anything happening to my right eye, but it's been pretty stable thus far.

My grandfather died of a brain tumor and it's really scary how it accelerated. I really hope you're dad is in good hands.

Something I've found most helpful is just whenever there's something to read on TV or a computer, I'm really near sighted so sometimes my mom will read what it says, and whenever we're at a restaurant and they have those big boards that list the menu, I always have her read them to me. Or get the paper menu.

I'm pretty able to do most things. It's mainly just reading stuff far away .

How are things for you and your family ?

Things are good for us! My dad works full time (after a few years of consulting). His brain tumor was a mengioma and was removed completely and he hasn't had any regrowth of it. He had a 2nd kidney transplant 15 months ago and is doing great! He can still drive (although he prefers not to at night) and can do almost everything on his own. He had a brow/kid lift last fall which gave him some more field of vision and he recovered well from that.

His worry is that his right eye, the totally blind one, is starting to rotate out. Though it still tracks and the pupil dialates, it's not as strong as it was. He's had good doctors so they're checking in every 6 months with him now. He's back in glasses to keep his eyes protected -- I still have to convince him that a few tasks aren't allowed anymore like leaf blowing!

It's been a change for our family and friends with a level of awareness -- so many people park in front of handicap walkways or are unaware of how to give space to someone with a cane. My dad does have a good time at parking in the handicap spot and whipping out his cane as he gets out of the driver's seat!

Are you active over on r/blind? There are lots of good questions that get posted there that I know I can't answer (only being a family member/caregiver) but someone like you with many years of experience could be a great resource.

I just joined r/blind. I'm glad things are going well for you guys and you're able to accommodate for him. It is tough to manage but it's workable. Especially having the support of doctors is really nice. I went a while without an eye doctor because I was living out of state. I think if I had an eye doctor steadily throughout, a lot more could have been managed. But I'm thankful I'm able to see good doctors right now. I know it's tough with the Coronavirus too

Isn't there a simple operation to at least get them both pointed the same direction? Even without a "cure" it seems we could help the situation by making it less distracting.

You're fine just the way you are but that never means you can't be better! :)

There is a strabismus surgery to realign it to match the other. I'm kind of annoyed with my parents for not doing anything growing up. I kind of just had to suffer with the way it is.
I think they figured because I've never had sight in that eye and they can't restore the sight, there's nothing to be done.

I'm looking into getting a prosthetic shell to put over the eye. I didn't even know this existed until a year ago. And I could have had one since I was a kid!

But when I went to get it fitted, because my cornea is facing inward, the edge of the prosthetic shell touches it and it's too uncomfortable to wear. There are a couple solutions to that

Ultimately if I wanted I could get my eye removed and have a prosthetic eye. I'm not sure I'm ready for that yet.

I think it'd be good practice for when, soon, an artificial eye will be better than a biological one. Also you can hide your drugs in there. ;)

Yeah I saw the guy who got a camera installed in his eye! That was badass!

When a "good" artificial eye is ready, will you get it?

How do you determine what a good artifical eye is? I haven't done a lot of research but it does intrigue me for sure.

It's kind of a tech fetish for me, as a transhumanist. Whenever i read something about tetrachromacy or mantis shrimp eyes i get pure jealous! Right now they can only do a very low-resolution thing technologically, i think about 256x256 pixels, but the way technology goes, there's going to be a tipping point where it becomes safe and ubiquitous.

That's awesome! It's going to be exciting to see what technologists come up with over time. There was that movie with Blake lively called All I see is you, where she's blind, goes to Japan, gets surgery and drops and is able to see again. I wonder if in places like Japan, which are far more advanced, what options will be available in years to come.

But that's just one body-mod. What else would you get if Anime technology was available to regular people?

How far does anime technology expand to

When thousands of blind people start seeing again, you’ll know it’s good.

Good point. I mean there's stem cell research and there new technologies that are being made every year! From what I've discussed with the eye doctors and specialists, my optic nerve is so damaged and so doubly damaged from glaucoma and what not, that they can't just stretch it back to life and send the signals from my brain to my eye and make me see again. But who knows, everything is so advanced.

As someone who has ROP and a lazy eye (Though outward), my parents had me undergo the surgery at two. It did not keep, even after wearing a patch for a couple of years on the other eye.

Like you, I also can relate to the fear of losing vision. I had the retina in my left (stated differently, good eye) detach at 17 and nothing has been the same since, especially as I was learning how to drive.

I know above OP you said that you notice people noticing your lazy eye -- People tell me the opposite, that they usually do not notice it unless we are having like a face-to-face conversation.

I cannot look anyone straight in the eyes and it tends to piss people off. Have you had the same experience?

Hi. I'm glad you can relate. I know it's a sensitive subject. I'm glad I could at least bring it to light for those around me to feel more comfortable relating. I actually love to look people straight in the eye. I like having someone's full attention and presence, even if they are confused by the way I am looking. I do get really shy and self-conscious when I'm talking to people because I don't know what they're thinking about me, if they're judging me or what.

I had a lot of kids bully me through school. It was awful, and I was a really quiet sweet person so it bothered me that some people couldn't just like me for me.

Does your eye give you any pain?

I totally get VERY sensitive and self-conscious, yet I never really have had stage freight or any real social awkwardness (Outside of the normal stuff haha). But yeah the pain is annoying, rarely is it in the eye itself. I have a scalarel buckle over my left eye and that can cause me pain. In my right eye which I have a drag macula on, it sometimes gets ocular bone pain or sensitive to ocular migraines or other headaches. Do you have wet or dry AMD in the good eye? Being a super preemie certainly has its pain, I was born a few years after you at just under two pounds and 26 weeks gestation.

What's wet or dry AMD mean? Yeah that's a lot going on. I have sympathy for you though. I get headaches. And eye pressure sometimes from the glaucoma, but I just had a laser surgery done and is helped. The healing process is just a bit difficult because my eye is irritated and feels like someone punched it in. I was born i think 23 weeks. I weighed only 1 pound 9 oz. So they did a lot to keep me alive.

My son was born with optic nerve atrophy. He is not totally blind. Pretty close to it though. How are you doing in the job market? My son will be turning 25 and was just laid off due to covid and is having trouble finding work now.

I wish you the best and hope you have a great support group. Your photos are beautiful also and you should understand how powerful of a person you are.

Thank you for this AMA.

Thank you so much. I'm in retail right now but I'm on a personal leave because of asthma and the coronavirus. And that means a lot. Best of luck with you and your son.

Do you wish your doctors had done anything differently? If not, what did you like about your doctors' approach?

I think when I was younger I wished my doctors explored all of the options with me. When I asked about the way it looks and fixing that, they said I could get a realignment surgery but it would be considered cosmetic and not medically necessary, and my parents didn't really feel the need to do that. Even though I really wanted something done.

On a positive note, I do feel my doctors' approach was very helpful in that they looked after my eye and wanted to make sure it was healthy. They're doing a lot more now though.

How did you meet your BF?

When I was living in Florida, we met there. But I've since moved back home and we've been long distance for a while.

What was in Florida? Did you move with your family or by yourself (to FL)?

I moved to Florida originally for a relationship. That didn't go well in the end. I met him. Moved back home with family. But we've stayed together

Sorry but I am confused.. you went for a relationship with someone else that did not work out?

I'm from the northeast. I moved down to Florida when I was younger, for a relationship. Years ago.

After that relationship didn't work out, eventually I moved on.

After moving on i met someone else (current bf)

I moved back up north to be with family.

Stayed in contact with him and we continued our relationship, but it's long distance now

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A lot of people have a great sense of humor about their personal ideosyncracies. Many don't, and are very self-conscious. If you don't know the person well, or at all, I'd say the best thing is to have silence as the default.

Thanks! Yeah I think idiosyncrasies are cool. It's just like, I feel along with my eye I have more that I don't want. Haha

We're there any particular events in your life that helped you love yourself more?

Not really events. I mean I've been through some rough times in my life that gave me some perspective on what's really important in life. Also knowing that other people have flaws too, and being able to appreciate their flaws makes me feel less alone. It is still a big struggle to love myself every day. Sometimes I just cry because I feel so insecure so there's that.

Sending internet hugs

Thank you for the support. Hugs!

How has the current global situation affected you as far as friends and social activities? Are there any activities you are doing to keep your spirits up?

BTW you're lovely and if people can't see that they need to check themselves. Thanks for sharing your story.

Aw thank you so much. I'm introverted anyway, and I don't have a huge friend group, so it's not a huge shift. But the friends I do have are always encouraging me and trying to help me stay confident. I have a really great family that us very supportive, which is nice.
I am kind of bored though sometimes like the days are feeling kind of blended together. I also miss my boyfriend. :(

I needed to step in and say something because your disability reminded me of my mother. First off, you're beautiful even if that's not how you perceive yourself and your cat looks happy as can be in your arms. What is his/her name?

My mother is 100% blind in both eyes with no light perception anymore. Her optic nerves died in 2001/2002. She can't always keep them facing the same direction and honestly it bothered me a lot for years but it's something that I have grown to ignore because I recognize now how selfish it was of me to expect her to have magical control over her disability. I am so proud of how much she's accomplished since her blindness and she never stops volunteering to help others. Please recognize that self-love is hard to come by in this world, no matter how easy other people try to make it look! It's day in and day out, trying your hardest to remember that YOU matter even if nobody else remembers to tell you.

Thank you. Your story is really touching. And yes self love is hard to come by, but there are so many more important things in life than your appearance. I struggle with that. But I know I could have it a lot worse and I'm thankful to have sight in my right eye.

Do you have any tips other people with vision in only one eye might find useful?

I only have vision in my left eye, but none of the doctors or anyone I know have similarly limited vision, so learning tips to handle it better in every day life is pretty much just a slow trial and error process.

Well you have my support. I know its tough with only being able to see out of one eye. As far as tips go, something my eye doctors told me about was a service that's helpful for people who are visually impaired. I don't know how helpful this is https://www.aao.org/eye-health/diseases/low-vision-resources

But my doctors gave me resources like having accommodations and help with driving services etc.

Maybe your doctor has some resources in your location.

There are other subreddits and there are a couple sites with forums for support. This is one that's helpful to me.

https://losteye.com/index.php?sid=

Stay strong. It sucks when you feel like you don't have many people to relate to but you'd be surprised how many people can actually understand what you're going through.

Hey, i'm a 32 year old male. Born blind in one eye, glaucoma. How are you?

Hey! Thanks for the support. I'm good. Just had laser done for glaucoma. It's been a bit sore, lol.

What are your hobbies?

Thank you for doing this AMA

Thanks for your support. I don't have a lot of hobbies. Mainly just music, movies/TV, reddit, shopping, dancing, cats, and food.

If you only kept your left eye open, what does it look like? Is it just pitch black?

No it's not even pitch black. There's just nothing there. I don't know how to describe it. I guess when your visual field cuts off at a certain place, like you can see from point A to point B, but you don't know what after point B looks like...it's like that

Ever thought about getting an eyepatch?

Second this, I think she could rock a properly fitted and sized eye patch.

I've seen a couple cool ones!

Yeah I want an elle driver one lol

ok so here is a question i really want to ask, you know how when someone is born blind, and when they get question "what do you see? is it black or what?"and than they can't answer because obviously the don't know, well that is my question for you. what do you "see" with the blind eye?

I don't see anything. Like I don't see black. I just have a small bit of light perception because I can tell if there's lights on or sunlight or something moving. But I can't actually see anything, not even pitch black. And I don't know if I believe the whole spiritual thing where it's like a blind person can see into this deep realm because they don't have physical vision. Maybe it's different for a fully blind person.

What color is your toothbrush?

Its one of those clunky white electric ones

Which eye do you blink with? 😉

Lol. It's weird,I can't blink my eyes separately.