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Blind and Visually Impaired Community

Full History - 2022 - 03 - 02 - ID#t5b898
21
the grieving process (self.Blind)
submitted by redmarus
I haven't had the opportunity to talk to other blind/vi people and realized i'm quite overdue. Since maybe November 2021 i've been losing my ability to open & focus my eyes for more than a few seconds without sensory overload & nystagmus (genetic neurological condition exacerbated by stress) and I'm doing my best to adjust and cope. I can comfortably maneuver outside with a cane, I can do my dog training job, I can even still practice speedrunning the game I was playing when my vision started to go.

I don't want to be whiny. But I was raised to believe that disability is a deeply shameful thing and that good disabled people don't complain and don't let it get in their way. I only ever bring it up to my sibling who is supportive but keeps talking about getting out of the stressful situation and how I might get my vision back. But that doesn't help me now. I'm sure that there's tons of advice for newly blind/vi people asking for how to find ways to readjust to life, find things worth doing again. Where do I begin to look?
OldManOnFire 12 points 1y ago
I've often said going blind is harder than being blind.

We grieve the loss of our eyesight. That's not really surprising. What others don't realize is we also grieve the loss of our potential. It's such a waste, isn't it? We could have changed the world, made it a better, healthier, more beautiful place. We could have made a difference. We could have been important. Maybe even necessary.

We could have mattered.

Then Poof! Everything changes with a single visit to the eye doctor. Turns out you won't be curing cancer or building the next Eiffel Tower or landing a rocket on an asteroid. You won't even keep the supply chain moving or keep the freight trains running or coach little league baseball. Your dreams just got a whole lot smaller. I wasn't ready when that happened. It's easy to learn to live without eyesight, it's much harder to learn to live without dreams.

So now we're grieving two things, our eyesight and our potential. That should be enough but there's more grief coming. We start grieving the loss of our identity. We don't know who we are anymore. What do blind people do? How do we act blind? How do we fit into this new life? How do we fit into our old life?

There's no instruction manual. We've watched enough television to know what to say when someone loses a loved one, or to know how to come out of the closet, or just about any other situation we'll ever be faced with, except this one. We didn't grow up watching blind role models in movies. Consequently, we have no idea how to do this blind thing. Maybe Braille and dark glasses? Get a guide dog and a white cane? We don't know. More importantly, we don't know how to find out, either.

Things that were familiar in our lives are suddenly gone, and a bunch of new things take their place. And even if we are the kinds of people that generally do well with change, blindness brings so many changes so fast it overwhelms us. We knew who we were, but who are we now?

Eyesight, potential, and identity. There's lots to grieve. Don't pretend it doesn't affect you. That's stoopid. Of course it does. How could it not? The sooner you acknowledge it the sooner you can start dealing with it.

Here's a few things that worked for me -

Replace everything blindness takes from you with something else. If you can't ride a bicycle with your friend anymore get a bicycle built for two, or get a spin bike. If you can't paint anymore take up pottery or sculpture. If you can't snowboard anymore learn to water ski. If you can't read a book or watch a movie listen to a podcast or an audio book. Don't let blindness take everything away from you. That road leads to depression and bitterness.

Start working on your blind bucket list. This is your opportunity to see the people and places you want to see. Make memories of the people you love smiling and being happy - that's the way you'll remember them when you can't see them anymore. Fly kites at the beach with your parents. Throw a frisbee with your friends. Try archery and oil painting and sky diving. Step into the ring and throw some punches. Use the time you have left to see everything you want to see - don't wait until it's too late and spend the rest of your life in regret.

The grieving isn't easy, but it doesn't last forever. One day you'll understand you're just as worthy in the passenger seat as you were in the driver's seat. You're just as loved, just as necessary, as you were before. A human being without eyesight is still a human being. Blindness changes everything but it changes nothing, too. You are still you.

And you're okay.
imjustyittle 3 points 1y ago
Not OP, but have to comment. ***Wow***, this is something I needed to hear right now. Thank you!

After some 9 years of injections, the macular degeneration is starting to win this race and nobody can predict where the vision finish line will be. A 6-year Army term built me a stubborn independent streak. I think I've feared losing that strength in myself most of all.

19 years ago when I had cancer, my onc's suggestion for dealing with the depression was to 'Fake it 'til you make it.' God knows I'm really trying to, but it's trickier with this and so *many* lifestyle changes coming so fast.

My shots have been free thru the V.A. and I totally trust my retina specialist. I wouldn't want to change my medical providers, but it's uncomfortable. I'm usually the only woman in the V.A.'s ophthalmology waiting rooms and very often, in the other clinics' waiting rooms, too. I can't read the faces and expressions anymore of possibly too-friendly fellow servicemembers (I know, even at my age!). No thank you, I don't want to go for lunch, send you a pic, etc; one recently belly-laughed telling me how he enjoyed occasionally beating up female MPs (Military Police) overseas back in the day. ("I picked her up and slammed her down on the table...) I mentioned it to my doctor, "That guy you just saw really creeped me out..." I'm not seeking and definitely don't want anybody's pity. But my secret truth is, I do feel less safe in certain situations, and I haven't figured out yet how to deal with that.

Saving your response to go back and read again the next time I'm feeling down. Thanks again for sharing it!
gabby_skii 2 points 1y ago
This might sound really weird, but I really needed to hear this, especially from another woman. Thank you ♥️
redmarus [OP] 2 points 1y ago
the part about identity is so real. if there's something ive come to understand its that in many ways admitting to being disabled, becoming disabled to the point where you can't hide it and have to identify with it because of how present it's become in your life, it's that it feels a lot like crossing into another world. I spend a lot of time researching disability history and eugenics so I've spent a long time being aware of that world and terrified to enter it.
TechnicalPragmatist 1 points 1y ago
Why can’t you have dreams or potential as a blind person. Of course you can? Those things you listed as dreams or ambitions you can 1000% do as a blind person and still do it really well. Just because we don’t have eyesight doesn’t mean we or you don’t. Have any more potential though. That’s so wrong to say.
carolineecouture 7 points 1y ago
I don't have any advice, I'm sorry. I think you are right that it's a process of grieving, sometimes things seem better and workable, and other times not. I've experienced the same. Good luck to you.
ws_pursuivant 5 points 1y ago
Contact the vision loss rehab agency where you got your O/M training. They will have peer support & advocacy, too (as well as help with technology, life skills, education, careers, etc.).
redmarus [OP] 3 points 1y ago
uh, I don't have any of those. I trained myself in orientation and mobility and adamantly refuse to engage with people in the predatory disability ecosystem thanks to Experience
TechnicalPragmatist 1 points 1y ago
How is it predatory if you don’t mind me asking genuinely curious.
redmarus [OP] 1 points 1y ago
I was going to answer this by linking to that miserable thread about homes for the blind until I looked closer and saw you were in the comments talking positively about those warehouses so I don't think this is going to be a very productive discussion.
TechnicalPragmatist 1 points 1y ago
Positively. I don’t know about that. I was objective. Not positive I don’t think that it is the greatest thing no. I may even be in agreement with you. Not sure where you got positive from what I said.
cuntasauruswithacane 3 points 1y ago
I grew up with that same "shame" surrounding disability. It sucks ass and I'm really sorry you're in that situation in the first place. I'm struggling to adapt to my eyesight deteriorating so I could be a massive hypocrite in saying this; but the best thing you can do is take it one day at a time.
Take the challenges as they come, adapt, find ways to do things. (obviously if it's say- no bus driving!)
Don't beat yourself for the situation you're in, and don't force yourself to be "happy" about it. Let yourself grieve but don't let yourself fall into a pit of misery and wallow.
I hope you take care of yourself and if you ever need a chat my PMs are always open. Good luck ❤
chosen-username 3 points 1y ago
I accidentally ran into this comment when trying to figure out the "baran" thing.

​

Look if anyone gives you trouble for being blind/sight impaired that person is a MASSIVE arsehole. Can't even begin to describe the size.
cuntasauruswithacane 1 points 1y ago
😭😭😭 It means sheep in Russian but it's fairly derogative!
And yes totally agree. But people will always have their opinions.
DrillInstructorJan 3 points 1y ago
Who raised you to believe disability is shameful? Jeez. A pain in the ass, sure, but I never got the shame thing.
bradley22 2 points 1y ago
I was born blind so can’t help you, but let me assure you, I bitch and moan like everyone else!
TechnicalPragmatist 1 points 1y ago
Just one thing you should know that blindness is not the end of it all. You can still live a full and fulfilled life. Have dreams hope and chances. Just differently and to adapt to it.you can do anything else that others can. Don’t let the world bring you down. Know that there’s still a world or 3 ahead of you and you can do anything you’d like and be just like your sighted counterparts.

Have you thought about blind organizations there may be others like you who can help.
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