Hugs you both tight. I can't imagine what ya'll are going through.

♥

More hugs. Both of you stay strong.

Fffffuck. I mean... Seriously, what else is there to say? I'm sorry for the both of you, that's just so immensely unfair. I don't have any experience when it comes to that, so I can't give any reasonable advice.

I've asked a friend and apparently there is a genetic therapy medication thing available rather recently that is supposedly able to halt retinitis pgmentosa. 350k per eye though. I don't think such numbers could be reached with a gofundme, though I have no experience with that.

Probably stupid, but maybe it's possible to move to a country with real public healthcare?

I'm sorry, most of that sounds probably rather stupid - I'm just throwing out everything I've got here... Sorry...

With our luck, a GFMc would net us like $1,200, if that. Even if we could afford it, IIRC, those surgeries are to halt RP but she's already legally blind and her vision gets a little worse every day. I don't know if there are any surgeries that can reverse RP.

So alas.....

There's nothing I can say other than that I'm sorry. This whole thing sounds like some kind of depressing Russian fairy tale.

Yeah..... I'm not a religious person but I'm kinda starting to feel a bit like Job over here.

Ugh, I feel for you on this, on a personal level. I am almost recovered from my fourth detached retina surgery. The recovery from those are no fun at all. Eventual/Inevitable blindness is something that also potentially lies in my future.
It's tough. It will be tough. There's a whole new way of life to learn; come up with new ways of handling some things in life, and coming to grips of losing other important things in life. That's the hardest part.
You both don't deserve any of that, especially with all the bad that life has thrown at you. You've proven yourself to be strong...so many times over, already...so I won't say "Be strong"... We know you are.
Just know that there are people that care about you, that love you. If you need someone to listen to you scream into the void, reach out and scream. If you need comforting words, reach out and they will be there.
Wish I had a few million lying around, cuz I'd throw some your way if it would help your partner keep her vision.

Damn. I'm sorry to hear that. And thanks. Kind of you to say. ♥

Here’s my probably useless long-shot two-cents:
Canadian SciFi author Tanya Huff has a character named Vicki Nelson(I know the book version, scared to watch the tv version). A PI who had to quit her job in the police due to RP.
Now I don’t know if Tanya was looking for a reason for her character to need to quit the force and read up a bit on RP or if that was done in honor of someone close to her and something that has personally affected her.
I’d ask myself but questions starting with “ I have a friend who…” are often misconstrued.

That's interesting.... Hm.

As to your second comment, I'll run that past her and see what she says.

A quick google search for “video games for the blind” turned up a few entries.

I can't offer much in the way of advice -- I've had two friends stricken with Macular Degeneration and my neighbor suffered from Retinitis Pigmentosa. One of the MD victims got into an experimental treatment program at Yale. His vision didn't improve but they seemed to have stopped the degradation. My neighbor passed away ten years ago, before any RP treatments were available.

I'm kinda grasping at straws here, but this article looks like something to look into.

Anyway, I'm wishing you both the very best, for what its worth.

Interesting. And thanks. Who knows what treatments will be available down the line. Sadly, I doubt we'd be able to afford them anyway but it's nice to think there might be a cure someday.

First off, My condolences on the matter. Its always terrible news to hear of such life changing issues.
Second, NEVER give up on her. Be there for her. Be the guiding hand and loving life mate. Statistically, many people who go blind have committed suicide. Break the odds and be better. There are rehab and assistance programs that help the recent blind to adjust and live a fulfilling life.
Third, just because some things can not be shared and explored visually, doesn't mean they can't be shared with the other senses and other new activities that don't require sight. When it comes to the subject of losing sight, I'm often reminded of an episode of mash where Hawkeye is temp blinded. (episode "out of sight, Out of Mind") In it he notices more of the world though his other senses such as smells, sounds, the textures, just how amazing the world is when You stop to listen and take in everything with your other senses.

it will be hard on you both, physically and emotionally, but overcoming and dominating will show the world you both are stronger for it.

Aye. I'd never give up on her. And if she goes, I'll go with her. She's a trooper though so that probably won't happen anytime soon.

When Mr. Rogers Neighborhood returned following 9/11, he talked about a suggestion his mom used to make, when tragedies take place. I think that this fits that category.

Listen to what he says, here: https://www.youtube.com/watch?v=-LGHtc_D328

Thanks. I'll give that a listen. ♥

I used to have a blind friend, but we drifted apart years ago, so I sadly don't have an easy source of current information.. The only things I really recall from that, are that they just appreciated being treated like a normal person, instead of being considered fragile or seen as needing help constantly just for being blind (they once told me a story about being asked how blind people open doors, and they said they went into excruciating detail about every little step to tease the person for asking), and that text-to-speech and speech-to-text options for online things were a godsent (lots of typos if you have an accent or use while tired, but otherwise can be very useful).

There are also service dogs trained specifically for blind people, but that's expensive and can take a long time to get, pre-trained or otherwise. I've also heard of newer treatments that might fix complete blindness, but those are even more expensive, sadly..

Oh, but braille might be good to learn, if available! Rarely used in commercial spaces, though I've heard some people saying they've seen a few places around the world starting to be more inclusive with it. But even so, a lot more books exist in braille nowadays, so if JD likes to read it might be worth considering at least! It's a touch-based alphabet. I've seen people read braille before, and once you get used to it, they can read as fast as anyone else; sometimes even faster than people who read with their eyes! Personally I've only ever seen the A-Z alphabet in braille, but I've heard that some countries with different alphabets have their own set of braille as well. I'll leave whether that is worth it up to you and JD tho.

All that said, it definitely sucks. Best of luck going forward.

Many thanks. I'll pass this along to her. ♥

We're getting into braille now and apparently there are videogames for blind people which I had no idea about... If we didn't have so many cats, maybe we could consider a dog. Someday, that may become an option.

Service dogs are chosen for training based on many factors, one of which is that they need to be calm and attentive. They get desensitized early to a lot of noises and animals, so unless your current cats don't like dogs, it might be a decent option if you can get the money for it. It's sadly still very expensive, no matter whether have your own dog to send for training or you need a pre-trained one, but if it's a confirmed service dog already, then it has passed all those tests and shouldn't cause any fuss with your cats. I can't say whether they have different standards wherever you've managed to get to, but that is usually a standard every service dog has to pass.

Also, I just remembered this video from the Try Guys from a few weeks ago. A lot of silliness, but it can give you a small look into how service dogs for blind people work and help you get around safely. It's 13 minutes long, has decent information, and you can even see the dog they use in the video changing its pace based on the comfort of the person being led. It's a nice little watch.
https://www.youtube.com/watch?v=CvAmiYQgytA

Thanks! I'll give that a look. ♥

My condolences. It does seem to come non-stop for you, and I'm sorry. I wish you and JD are able to have things improve after all of this.

Blindness isn't the end of everything though. Experiences will definitely change, but it doesn't necessarily mean your plans will need to be scratched off. Plenty of people enjoy nature without sight: https://www.azcentral.com/story/tra.....nyon/84598770/ https://www.insightfortheblind.org/blog/273 https://www.visualexperiencefoundat.....g/niagara-2017 https://divermag.com/feel-good-diving/ and there are now art programs starting to have ways for people to experience it without vision: https://all3dp.com/3d-printed-tacto.....e-photography/ https://www.fastcompany.com/3057221.....less-paintings

Thanks. :} I appreciate it. I'll pass this along to her. ♥

I know this really sucks but as hard as it is losing your vision it isn't the end of the world. Of course there will be a period of adjustment and it's always going to be difficult in many ways but it's not a death sentence. The best thing you can do right now is work on talking to people who are blind and getting advice from them. Look to organizations that help with blind people and start making changes to your place of living now so that as she loses her sight there's less chance of her being hurt.

The biggest issue will be safety around the home and finding transportation places so definitely look into that.

We looked into medicaid/care transport and it's kind of a nightmare. Every. Single. Time. They left us hanging. And working with the office of SSD is another nightmare in and of itself. They sent some of our shit to the wrong damn address and someone posed as JD and claimed to be getting 2k income every month. She's blind, has S4 cancer, she's narcoleptic, has lupus with extreme chronic pain.... DEFINITELY NOT WORKING! XD But they yoinked her benefits anyway so now we're gonna have to fight about that. Fun times ahead.

It's been a nightmare but we're doggy paddling along I guess.

Yeah I'm sorry you have to go through all that. If you ever need someone to talk to you're always more than welcome to say hey.

♥

I don't have any words, but my heart is breaking for both of you.

♥ I appreciate it.

Start digging into info about how to work the system for as much disability as you can, NOW. Job retraining, classes to learn braille, straight up cash, whatever you can get.
Cold comfort because it won't get her eyesight back, I know. But when you know something's coming, it's best to brace up for it early if you can.

Aye. Thanks. ♥

She's already considered disabled because of the cancer. Narcolepsy and lupus don't count for some inexplicable reason. She has a pretty long list of other issues that basically preclude work. Braille is definitely on our to do list though.

I'm so sorry she's going through that, and that you have to see your loved one go through that. If I could give you a few mil I would. You've dealt with enough shit in your lives. It's time you got some well earned relief. *hugs*

♥ ♥ ♥

That's awful hon, I'm sorry that's happening to you. I refuse to believe that they couldn't perhaps reattach the retinas? Don't say it's impossible, it's not, I'm living breathing proof of it, the guy who pioneered the reattachment picked me as a subject when I was an infant, it is possible, though whether insurance pays for it is another story. But it's something to look into given the circumstances. I know costs suck, but I'm sending you hugs and morale, and hoping things will get better for you. Hang in there hon.

It is impossible in this case because the one retina detatched and died. Apparently, that's what happens if you don't get to it soon enough. The other retina is still attached but it's clouded over with pigment. Unfortunately, any potential treatments are out of our price range by, like... a few hundred thousand dollars. Maybe if we had some zeros to throw around, it would be a different story. Alas, with our luck, never gonna happen. And her insurance won't cover such treatments because they are "experimental."

There are really no options here besides "get rekt" and "deal with it." It is what it is. But we're still hanging in there for now. ♥

I don’t even know if you remember, but years ago when you shared a 3D sculpture of a wicked vase you made, I suggested you 3D print it. This might be the time to enter the world of sculpting and 3D art. This will allow you to still share your masterful works with your partner. She will be able to still “see” what you make through touch. It will likely also help her to recognize textures and objects more easily when she transitions into being unsighted.

You will still be able to share things you love with her, it will just be a different experience for both of you.

One more thing you can start doing is typing out straightforward descriptions of any image you share. I know some folks who do this for anything they post in chats, on Twitter, on FA, etc. It’s a practice that helps include visually impaired people who use apps and device features that will read text aloud.

Here is a resource I found online for you and her to look into: https://hadley.edu/vision-resources.....-and-resources

Sending you and her strength and hope.

Okay so firstly, thanks. Excellent suggestions all around. I never really advertised it but I did actually print that vase. I should probably post the pics. I printed it through Shapeways. Unfortunately, it seems like they are no longer an option. They're expensive and their UI is a nightmare to use. I'd get a printer for myself but I have absolutely ZERO threshold for frustration right now. All the shit that has hit me upside the head this year has whittled my emotional bandwidth down to that of a toddler. There are other services I might look into such as iMaterialize. Nevertheless, it's definitely a good idea.

Thanks. ♥

I would definitely love it if you shared the vase, that’s awesome. And yeah, 3D printing does cost $$. But traditional sculpting is not too expensive. You can also get creative with unconventional mediums. I used to make sculptures out of hot glue, it was cheap and quick drying. You can put in a surprising amount of detail, too. Options are there, it’s just hard to see among all the stress and trauma right now. Just keep on keepin’ on. ❤️

Hot glue sculptures!? Now that's interesting. Do you have any example pics? I'd love to see.

Hehe, alright. Old account is on DA that still has examples: https://www.deviantart.com/azefish

DOOD! That's cool as hell. :D And super pretty!

Aaaaah, thank you! I haven’t worked on one in so long, I really should pick it up again.

DOOO EEEETTT! Like... I'm seeing decorative containers and utensils, nightlight covers, wind chimes, suncatchers... you could try and integrate dyes.... So lovely. So many possibilities. ♥

Are you on Facebook? I have a friend there, a college professor, who went blind after a car accident. He's VERY knowledgeable and I can link you guys up.

I am. https://www.facebook.com/bobbiejean.pentecost And I'd appreciate it. ♥

I'm so sorry. :/

Thanks. ♥ It is what it is. Just when you think life is done kicking you in the tits....

Oh damn.

So sorry to hear this, Silver. You and JD have my fullest sympathies, and I wish you two the best of luck, and all happiness you can get in this situation!

♥

I haven't got any practical advice that might help, but there's one thing I can offer:
There are video games made specifically for the blind that you two could play together. Either enjoying a single player experience on the couch or co-op, I'm not entirely sure what all is out there. But I know there are some. This article has a small list, but there are others, I believe.
I'm sorry this is happening, on top of all the other shit y'all have had to deal with.

Thanks. I appreciate it. We're definitely interested. :)

Happy to help however I can!

♥

My brother was blinded in a car wreck. Not sure if it's available where you are but Lighthouse for the Blind was where he went to get training in all kinds of things from braille to potential work oppurtunities, and just how to do things in general as a blind person from cooking to going to the grocery store. A few quick tips would be things like making sure there are designated spots for things to be, especially essentials like toiletries and foodstuff. Rubber bands are handy for marking things like which shaker is salt or not. Sticky dots or some kind of silicon glue is good for marking buttons on microwaves, or marking where to turn the dials on laundry. Also, music and audiobooks will be good friends. The Seeing Eye, I believe, is the place where you can look into a dog, and I'm pretty sure it's at no cost, but it's been a while so I don't remember exactly. I'd really only recommend the dog if you live, or want to live, a fairly active lifestyle. Those dogs are bred and trained to work, so they need to work a lot. XD Other than that, try to keep clutter off of floors so as to not leave traps, and practice being very verbal if you're placing or moving things nearby a blind person.

I've got a fair bit of experience helping my brother out, so if you have questions feel free to message me and I'll answer to the best of my knowledge. :)

This is all very helpful. I wouldn't have even thought of some of these things. The bit about rubber bands and glue seems especially useful. I'll pass this along to her. ♥

Damn... :(
*comfort-hugs*

Can't really say anything that would make that better... :(

Yeah. I appreciate the thought though. ♥

Well, shit.

Yeah, that about sums it up.

Well hopefully that cyborg eye shit catches up at some point... That sounds kinda lame.

That would be awesome. I think we have artificial retinas but those are WAY out of our price range, sadly, by like a fair few zeros.

The dystopia is curing blindness but no one can afford it.

Damn straight.

Lord. Just... lord.

Yup.

aw. so sorry to hear that!

best wishes, and may she adjust swift and well!



and hugs for you both, too. and for your stepfather if he wants some.

♥ ♥ ♥

I do not have any advice.... but I am absolutely devastated on your behalf. That is an impossibly tough situation. My heart goes out to the both of you. I am so so sorry <3<3

I appreciate it. ♥

There are audible books you can enjoy together.

Movie discs these days more and more offer Audio Description sound tracks (https://adp.acb.org/ad.html), and the more one listens to how the narration works, the one is able to do it rl, which would help in any travels to assist the other senses.

That's all i have. As the rest, wish i had more. Stay strong, but don't feel ashamed about being weak when you need to be.

Thanks. Muh appreciated. ♥

I am so sorry, as I got nothing.

About the only thing I can offer is this man's optimism, Pete Gustin is a V.O. actor in Hollywood, and went blind, but still enjoys surfing. He did not give up.
https://www.youtube.com/c/BlindSurfer

Thanks. And hey, we just got news that her cancer went into remission. So there's that.

Oh! that's excellent news! Just be observant of any changes around that though, at least until the 10 year mark.

Aye. Unfortunately, this kind of cancer has a habit of rebounding more aggressively but for now, we're taking the win and running with it. :D

Honestly, BlindSurfer was who I would suggest as well. He went gradually from mostly-seeing to completely blind, and most of his videos have a plethora of information regarding the contrast between the two states, and how he handles the transition. There's a ton of good info there, I'd strongly recommend giving at least some of it a look.

Thanks! I'll look into it and I'll pass it along to JD. Much appreciated.

Man, I wish I had some advice on this one, but it's not a subject that I know anything significant about. I hope that you guys can find a positive path forward through this.

Y'all have been kicked in the teeth enough as it is. Crap.

People have dropped a lot of good stuff here, as I knew they would. Best of luck!

Oh, and FUCK our Goddam health system. There's just no excuse on this. Keep your feelers out for pertinent clinical research projects.

Thanks. It's nice to hear it. And you're absolutely right about our health system. It has fucked her over to an extent that is unbelievable. She wouldn't even have cancer right now if our system weren't so fucked.

I'm so very goddamn sorry. Dear god, I can't imagine such things, and I'm heartbroken you're both having to endure it. Hold on to the love, no matter how painful it could get. We're all rooting for you two.

♥

So I am new to being an ally to the visually impaired world, but I can tell you with complete conviction that I have more friends talking to me about their experiences and struggles and I'm now seeing the world completely differently. There is a big push now that I have become a part of to make everything descriptive, teach sign as a everyday language, and make more movies and shows descriptive. I know there are plenty of books now available on audio as well.

As far as resources, if you're in the USA it can be hit or miss depending on the State you live in, but most hospitals and clinics will have some support groups to offer, and those are a great place to start. People will be able to give support that comes from direct experience, advice and tell you about things they wish they'd known at the beginning.

In my experience, those LIVING with visual impairments are the most kind and helpful to the people heading into the same situation.

I will also send love and positive energy, but feel free to PM me, my friend who is visually impaired may be willing to become a e-mail pal, or at least share information through me to you and your partner.

Thanks. Much appreciated. So far, a lot of people have been helpful but we're noticing quite a few shitheads who accuse her of faking because they don't know the difference between legally blind and completely blind. It's kinda frustrating. She still has a little bit of vision but she's WELL past the definition of legally blind. So when she's in the store, she can tell the difference between an apple and an orange but she'll get some very rude replies about it assuming she's faking.

I've told her to reply "there's a difference between completely blind and legally blind, go look it up!" to anyone being an asshole about it.

Oh I know how that crap feels, I have a traumatic brain injury and get accused of faking to get out of doing things all the time. People really need to mind their own darn business and shut the hell up. Sending all the love and positive energy! <3

That's awful. I'm sorry you have to deal with that. And thanks. ♥

I don't have any advice, that sounds so hard to have to go through. I can say though, niagara falls would be amazing even for someone who can't see it, it's very much a full-body experience.

:) It's definitely on our list of things to do.

We have a family friend who is blind, so, based on experience* interacting with her,
*(she lives in another state, so just the occasional visit TBH)

"Blind-proof" your home. You're going to find a spot to put everything, both of you know where it is, and always put things back in the same place. Enough you could walk through the house at night, with the lights off, and find what you are looking for, and not, like, trip over a chair you moved in the daylight.

Say what you are moving around, or what you're going to do, or you are going to accidentally crash into each other.

For maximum benefit, BOTH of you should learn braille. It's another way you can communicate.

Jenga. Yes, this is trivial. Yes, it's just a game. It's the one and only board game we could all play, with the "house rule" the un-sighted person(s) could use two hands to feel what the blocks were doing.

If I could, I'd create that cyberpunk future where replacement eyes/ears/ect are a thing.

If I could, I'd create that cyberpunk future where replacement eyes/ears/ect are a thing.

Yeah. :L When I was younger, I used to think we'd be there by now. I used to think we'd have mind UIs and nanobots and mind internet and whatnot by the time I was 35. Meanwhile, I'm 39 and here we are still arguing about whether the Earth is flat. Fuckin hell.

*nods* I kinda did the same thing, after watching Ghost in the Shell (the anime, not whatever the hell Hollywood did with it), which, is a future I could live with.