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What it's like to go blind (2015) (vox.com)
106 points by sergeant3 on April 19, 2023 | hide | past | favorite | 47 comments



I haven't gone blind, but I have been blind since birth. I think especially in the realm of technology, there's very little I can't do. I write code for my dayjob, I write different code for fun, and even do some audio engineering and music production.

I can also ride bikes. I have to know the area well of course, and be prepared for the inevitable accident, but I had a ton of fun doing it as a kid. Also climbing trees or participating in airsoft or laser tag matches.

I've also been able to drive a car. My family thought it would be cool to give me two practical driving lessons as a birthday present. So they called up a driving instructor and just asked. And it happened. Not on the street of course, but on a pretty big and open paved field that they generally use for their first motorcycle lessons.

I also travel. By myself. I have to do some prep work and I do have to ask for assistance a lot, but it's absolutely possible. Especially nowadays where we have phones that can do so much, from image recognition to GPS to video calls.

Naturally there are a lot of limitations. I can't just go out and explore a new place. Or if I have to travel somewhere for work and stay at a hotel I've never been at, getting around can be anxiety inducing and stressful. And of course I miss out on a lot of beautiful things. Like I can only imagine what nature looks like in all it's different forms. I can hear it, but I can't see it.

There's a lot more I could go into, but I just wanted to comment and give another little piece of anecdata. Of course, I imagine going blind later in life is a lot more terrifying than what I'm experiencing. Just like how I dread losing another one of my senses. I have no idea what I would do if I lost my hearing, even though I know there are deaf blind folks that do amazing things. We just do the best we can with what we have. And sometimes that turns out to be quite a lot of things.


Have you ever used the app BeMyEyes? It looks like a very nice project. I've subscribed but never had a chance of using it


You seem to have more accessibility than I imagined!

Something I have been curious about. Do you experience sexual attraction yourself? Is it based on voice?


Answering as a severly sight impaired but not fully blind person. But yes - of course! I'd throw it back at you - do you experience sexual attraction purely by looks alone? I seriously doubt it (and would be concerned if you did!). How a person sounds, smells, feels, behaves etc. all come into it. If your partner playfully blindfolds you, you wouldn't suddenly stop enjoying the experience.


Sure. And I think it's based on a bunch of factors coming together, voice being one of them. I don't know how it works if you have sight left, but I can't imagine that attraction is the same for everyone there as well. It's probably a lot more nuanced than that.


Definitely not as bad as the author, but slowly losing quality of vision is a nightmare for me. I'm very sensitive to any kind of changes and ~4 years ago my eyesight began to rapidly decline. It's still in very low numbers, but it already affected the comfort of how I live. Without glasses everything is blurry and gives me nausea, with glasses I can see, but it's not the same as having perfect vision. Myopia + Presbyopia, 30yo. It's been ~8 months since last prescription and I already need it updated. Every morning putting on glasses make my eyes hurt for first half hour or so, getting used to "focusing distance" readjustment still. Some days eyes simply feel tired and refuse to focus, yet after doing all the tests, nothing extraordinary was found about my eye issues...

Sigh.


I had an eye doctor assure me that my discomfort with my new glasses was normal and that I'd just have to get used to it. After several months of nausea and discomfort, I finally went to a new eye doctor that fixed the problem immediately with a different frame and fit. It turned out that the prescription was correct, but the fit was wrong.

Before accepting daily discomfort and nausea as a new norm, you may want to try having more than one eye doctor look at it, if you haven't already, for alternate opinions for tests and on all the parameters of fit. There's alot that goes into getting your vision corrected and a few tiny adjustments off can end up causing persistent nausea and discomfort similar to what you are describing.


I would expect doctors to check your retina too. It doesn't sound right. There are incurable diagnoses, but there should be one.


Nothing to add except to say, sorry for your troubles - that must really suck :-/


Do you sometimes have less pain right when you wake up in the morning? Sometimes worse pain in the middle of the night? Permanent redness / new blood vessels? VERY dry? Have they changed shape (more pointy than round, prominent cone like outline against your lower eye lid when you look down)? Yellowing?


Milton was blind when he wrote Paradise Lost and left us a beautiful description at the start of Book 3:

Hail holy light, offspring of Heaven first-born,

Or of the Eternal Coeternal beam

May I express thee unblamed?

...but thou

Revisitest not these eyes, that roll in vain

To find thy piercing ray, and find no dawn;

So thick a drop serene hath quenched their Orbs,

Or dim suffusion veiled.

...as the wakeful Bird

Sings darkling, and in shadiest Covert hid

Tunes her nocturnal Note. Thus with the Year

Seasons return, but not to me returns

Day, or the sweet approach of Even or Morn,

Or sight of vernal bloom, or Summer's Rose,

Or flocks, or herds, or human face divine;

But cloud instead, and ever-during dark

Surrounds me, from the cheerful ways of men

Cut off, and for the Book of knowledge fair

Presented with a Universal blank

Of Nature's works to me expunged and razed,

And wisdom at one entrance quite shut out.

So much the rather thou Celestial light

Shine inward, and the mind through all her powers

Irradiate, there plant eyes, all mist from thence

Purge and disperse, that I may see and tell

Of things invisible to mortal sight.


Jorge Luis Borges also wrote about his blindness as a writer. I remember some interviews, but the most popular of his works on the topic is his "Poem of the gifts" [1], a poem he wrote about being named director of the Argentine National Library around the same time as he went completely blind.

[1] https://thefloatinglibrary.com/2009/01/06/poem-about-gifts-j...


I recently had a thought about LLMs and vision models.

Unlike ever before, the blind can now listen to a description of the world around them, with no other person required. The computer can just tell them what is around them.

I don't know if that's worth anything or would have too much hallucinated information, but it does seem worth exploring.


Be My Eyes [1] recently announced a partnership with OpenAI. For years, they have operated a peer-to-peer platform that is staffed by highly-vetted volunteers. Now they will be able to offer audio descriptions using AI.

https://www.bemyeyes.com/


Yep, can't wait to try that!


With Llava which was posted here like yesterday, I took screenshots of video games, which I like to play. The descriptions weren't perfect, but they were really nice to have! I had a picture in my camera roll of my sister and I in the park, having our picture taken by my mother. I remember that day. And that's kinda what pictures are for! I guess. I've been blind since birth so I've not been able to really have this kind of thing before. Apple built something basic into VoiceOver a few years ago, but it's nothing like this. VoiceOver's recognition is like "Two people at a park posing for a photo." Llava is like "In the image, a man and a woman pose together for a picture outside. The woman stands to the left of the man as they both strike a pose. They appear to be in a field with plants behind them. The man is wearing a black shirt, and both of them seem to be enjoying the moment.". That's about on the level of a demo Facebook did a good 5 years ago of their stupid image description thing. I mean even if it's not perfect, it's better than what we've had before. MiniGPT said it was two people in a barn. This gets even closer. GPT4's image descriptions will probably be even better! I can't wait to try those!


iPhone does that with builtin magnifier and voiceover features, demonstrated by Kristy Viers here: https://youtu.be/8CAafjodkyE?t=57


Or convert it to music? Because music has much higher bandwidth than just words.


I recently learned BOTH of my sons have inherited some retina issues similar to what she has and will be legally blind. It's really difficult for me so far. They're dealing incredibly well with it, at least so far.


> Knowing my vision would recede into near-nothingness helped me make certain life decisions, mostly for the positive. Having your choices winnowed down makes it easier to make a decision and be happy with it.

There is a great Ted talk and an okay book that was promoted by said talk - The Paradox of Choice, that heavily leaned into this idea. The more opportunities you have, the more you have opportunity loss. No choice is bad, but too many choices can also be bad.


If this interests you theres a great book called "Touching the Rock" by John Hull which has a similar real-life account of going blind. There is also a virtual experience based on the same book for the Meta Quest which is pretty interesting.


Another one is Beyond Vision by Allan Jones[1]. He dealt with it partially by cultivating an Advaita meditation practice.

[1] https://www.goodreads.com/en/book/show/36627585


If you want another perspective I would recommend this documentary (https://www.youtube.com/watch?v=8pD_9Ym6k70) about Pete Gustin, a blind voice actor whose voice you probably recognize... and who also surfs. https://www.youtube.com/c/BlindSurfer


Two comedians went deaf and blind for 50 hours as a challenge. The blind one did not have a very good time.

https://www.youtube.com/watch?v=Gw9FituzSXk


To anyone going through this, there's still a way you can learn to see without eyesight, as strange as it sounds. Also known as mindsight, blindfolded sight, vibravision, etc., images are received to the mind directly through an unknown channel.

The youtube channels of Wendy Gallant and Rob Freeman have tons of videos of their journey learning and teaching this skill to others. Rob is currently teaching an elderly man who has been blind since childhood, and it's quite emotional to see him develop sight for the first time in decades: https://www.youtube.com/playlist?list=PLE-SrKGaUjdL5friFeCl4...

The article at page 9 of this magazine details the modern development of this phenomenon: https://www.scientificexploration.org/edgescience/47 (wayback: http://web.archive.org/web/20210923020222/https://scientific...)


This is also called a "scam".


Really strange because nobody is financially profiting. Rob only helps people who are blind or going blind. The old french gentleman Rob has been teaching joined the facebook group [1] on his own accord and receives training for free. He's been lauding and expressing his gratitude to Rob in the comments of every post. Just read the article I linked or look at its references, if you want to know more.

[1] https://www.facebook.com/groups/2485376505035437


I was too hard on it. There is some scientific research behind the theory: https://en.wikipedia.org/wiki/Blindsight


I'm partially blind in one eye from cornea scarring from contact lenses, and it really sucks. The light sensitivity is the worst part.


I'm blind in one eye almost since birth (had blurry vision until 10, then gone, am now mid 40s) and on a daily basis I couldn't care less and don't even notice! I can do everything I want and do sports and everything, the only slight issue is I'm sometimes a bit worried if I were ever to loose sight in my one good eye! But that's the only thing. I actually wear robust glasses just to protect my good eye :) - hope you (and others) figure it out, and I feel sorry for people with no vision at all.


What type of lenses caused that scarring? Improper fit?


It was really random - they were dailies, and just one set one day became really painful after a few hours outside. They were in a box I had kept but not opened for many months, but sealed obviously.

At first I thought it was "just" a migraine (but incredibly painful) so I didn't go to the doctor or really notice that much until over a month later.

It's only really noticeable if I close my other eye and try to read stuff that would be right in the centre of the eye. But the worst part is looking at bright white screens e.g. Google Docs background etc. is really disorienting.


Rigid gas permeable lenses can loses their coatings, and allergies/sensitivities to the preservatives in most cleaning solutions can develop over time. Both caused me problems, luckily a year of wearing glasses allowed me to recover. Now I only use hydrogen peroxide based cleaning solutions without extra ingredients. Much better, except for global supply chain problems right now....


This is why I wish I could afford ICL surgery. I'm a -20 with some astigmatism and RGPs are my only option for 20/20 vision. Glasses (even high index lenses) are heavy and only get me to about 20/50 or 20/60. If I develop a sensitivity I'm screwed.

And the RGP market is so small that sourcing alternative solutions sucks - if Boston doesn't work for you good luck I guess.


I loved reading this, it made me emotional. I've always been afraid of losing my sight and this made me feel less scared.


> Answer by Cristina Hartmann on Quora. This piece is an adaptation of Quora questions

First time I’ve seen this


New monetization strategy, I presume ... I'm expecting a great deal of chatbot-style generated content to start flooding in and the timeframe for cashing in on it is pretty low.


The article is from 2015, so, not this article.

Perhaps I have been lucky, but I have seen far more accusations of using AI to generate writing than I have seen of obviously generated writing.


Yep, it is the same thinking that runs heavily in the conspiracy theory crowd. Anything that they even vaguely suspect as evidence is proof of the theory.

It is a shame that we are now in the position of having to think like this but that is the new world we are in now.


I remember several years back there was what I can only describe as a moral panic about "machine intelligence-driven", "automated" YouTube videos for children. The idea was that there were myriad channels using AI to pump out low-quality content, and that much of this content was bizarre and completely inappropriate for children.

I was interested in the process of how someone could use AI to create content and, as is probably obvious with the perspective of hindsight, I could find no real examples of channels exploiting automated, machine-learning production.

This is the article that seems to have kicked off the trend but does not actually have any examples of automation: https://medium.com/@jamesbridle/something-is-wrong-on-the-in...


... the connection there being that undue paranoia and accusations about AI generated content has been around for a little while already.


> The article is from 2015, so, not this article.

I didn't mean this article specifically, but it can absolutely be done. Make the LLM the "reader" and have them retell the story like low-quality blogspam that still generates clicks and gets promoted by Google Now-type features.


Went Totally Blind: People who have lost their sight have different experiences. Some describe seeing complete darkness, like being in a cave. Some people see sparks or experience vivid visual hallucinations that may take the form of recognizable shapes, random shapes, and colors, or flashes of light. https://www.mygiftcardsite.vip/


My doctor has just referred me (at 36) for possible normal tension glaucoma due to obstructive sleep apnea so reading this piece is timely.

Interestingly enough the Quora account it sources from has been deleted.


More about Cristina Hartmann, the author, at her website: https://cristinahartmann.com/about/



This is exactly (same genetic disease) the subject of the book Slackjaw by Jim Knipfel. It's surprisingly a _fun_ read!




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