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I always knew I'd lose sight at some point. Now it seems to be happening and I'm not nearly prepared as I should be mentally. Help? (self.Blind)
submitted by adfghskld
Pretty much what it says in the title.
I was born with ROP and got lucky in that it didn't cause blindness at a young age, a fact I had drilled into me from pretty much birth. Another fact was that I'd most likely lose my sight at some point, which was harder to grasp, because even though I received services for it in school and had to look at things very up close, over all I didn't really have a problem. So I told myself I was okay without losing sight without ever truly internalizing it, I guess.
Now here I am in my 30s and my sight's gotten worse. As a kid I had a good eye that was pretty normal so it wasn't so bad to have the bad eye. But now the good eye is bad enough to qualify as low vision and the bad eye is well into the legally blind category. I have to have surgeries on the good eye, which used to be just for the bad eye. In a year or so I've gone from relatively normal visual acuity to bad acuity and I have crap contrast vision, night vision, and peripheral vision now.
I know I should be grateful to have made it this far with sight (and I am) but I'm so sad and angry. I always (naively I guess) assumed I'd be really old when my eyesight started to crap out. But here I am relatively young and everytime I go to the doctor it's gotten worse. It terrifies me that my sight will never be as good as it right now. I like painting and reading and seeing my sibling's kids grow up with all the silly little things they do.
I guess since I'm posting here, what did you do to get used this? My family and spouse are trying to help me accept it but it's hard for them get it because they don't have this problem. Everyone around me at home and work is either oblivious to it or super positive about it, and it all just makes me mad because it's clear they don't understand it. So I guess I'm just looking for commiseration or words of wisdom.
I was born with ROP and got lucky in that it didn't cause blindness at a young age, a fact I had drilled into me from pretty much birth. Another fact was that I'd most likely lose my sight at some point, which was harder to grasp, because even though I received services for it in school and had to look at things very up close, over all I didn't really have a problem. So I told myself I was okay without losing sight without ever truly internalizing it, I guess.
Now here I am in my 30s and my sight's gotten worse. As a kid I had a good eye that was pretty normal so it wasn't so bad to have the bad eye. But now the good eye is bad enough to qualify as low vision and the bad eye is well into the legally blind category. I have to have surgeries on the good eye, which used to be just for the bad eye. In a year or so I've gone from relatively normal visual acuity to bad acuity and I have crap contrast vision, night vision, and peripheral vision now.
I know I should be grateful to have made it this far with sight (and I am) but I'm so sad and angry. I always (naively I guess) assumed I'd be really old when my eyesight started to crap out. But here I am relatively young and everytime I go to the doctor it's gotten worse. It terrifies me that my sight will never be as good as it right now. I like painting and reading and seeing my sibling's kids grow up with all the silly little things they do.
I guess since I'm posting here, what did you do to get used this? My family and spouse are trying to help me accept it but it's hard for them get it because they don't have this problem. Everyone around me at home and work is either oblivious to it or super positive about it, and it all just makes me mad because it's clear they don't understand it. So I guess I'm just looking for commiseration or words of wisdom.
GoBlindOrGoHome 18 points 4y ago
I don't have much advuce, but I feel your pain. I'll be 23 on Friday, I'm legally blind in both eyes and on the decline. Didn't know how bad it was until this spring, so I definitely don't feel prepared.
I just want somebody to say "Man, that situation does fucking suck, a lot, you must feel like shit" but most people don't understand or don't want to talk about it.
Crying helps, meeting other blind people helps. Find a way to paint without your sight, I do acrylic pouring.
I just want somebody to say "Man, that situation does fucking suck, a lot, you must feel like shit" but most people don't understand or don't want to talk about it.
Crying helps, meeting other blind people helps. Find a way to paint without your sight, I do acrylic pouring.
unitool 2 points 4y ago
It does fucking suck, but I bet most people are self-conscious and uncomfortable bringing it up because they assume it’ll make you uncomfortable to talk about it. I know that has been my experience.
My cousin, who I don’t really know very well, has been slowly going blind for a long time, and is now at the point where he is legally blind in both eyes. He’s going to be moving from Denver into an apartment here in town pretty soon, and also getting a seeing-eye dog, I guess.
The family here in town is really excited and thankful that he will be able to live here near us. It’s a tiny town with very limited housing options of any kind, so it was a real long shot that actually came through for him.
My cousin is going to be at Thanksgiving dinner today, and my dad says that he’s cooking a large part of the meal for us, which is pretty awesome. I’ll try to remember what you said, and talk real talk with him if I get a chance, and if he wants to.
My cousin, who I don’t really know very well, has been slowly going blind for a long time, and is now at the point where he is legally blind in both eyes. He’s going to be moving from Denver into an apartment here in town pretty soon, and also getting a seeing-eye dog, I guess.
The family here in town is really excited and thankful that he will be able to live here near us. It’s a tiny town with very limited housing options of any kind, so it was a real long shot that actually came through for him.
My cousin is going to be at Thanksgiving dinner today, and my dad says that he’s cooking a large part of the meal for us, which is pretty awesome. I’ll try to remember what you said, and talk real talk with him if I get a chance, and if he wants to.
Aaron70Percent 9 points 4y ago
Get some blindness training. I recommend attending a NFB training center if you are in the U.S. It will help build your confidence and teach you how to be independent as a blind person.
RogueCandyKane 8 points 4y ago
One consultant explained it well to me - your eyes reach a tipping point of cooability. Medically, the decline may not be that drastic but the ability to cope with what you have crosses the line between managing ok to hang in a minute, this just got really hard.
I have RP and it was when the rp started to occur near and over the macular area in my good eye that has to make significant changes to my lifestyle.
First of all it’s ok to feel whatever you feel. Sure, it’s nice positive angle to be grateful for what you have had but it’s also ok to not be ok with what’s happening now.
You will adapt. First of all your brain will adPt to the new way of seeing. Secondly you’ll find new coping strategies.
For me the first major change was to undertake long cane training (white cane). Then I got a guide dog. That was two years ago (I’m 44) and I’m more independent than ever.
You will find your way. BST wishes.
I have RP and it was when the rp started to occur near and over the macular area in my good eye that has to make significant changes to my lifestyle.
First of all it’s ok to feel whatever you feel. Sure, it’s nice positive angle to be grateful for what you have had but it’s also ok to not be ok with what’s happening now.
You will adapt. First of all your brain will adPt to the new way of seeing. Secondly you’ll find new coping strategies.
For me the first major change was to undertake long cane training (white cane). Then I got a guide dog. That was two years ago (I’m 44) and I’m more independent than ever.
You will find your way. BST wishes.
brimstone_tea 7 points 4y ago
First of all. Don't forbid yourself to feel bad. Nothing can prepare you for something like that. E.g. everyone keeps telling you that one day a person you love is going to die, does it make it easier when it finally happens though? I don't think so.
Take your time to grieve. You weren't naive! Losing your sight is fucking scary, sad, lonely and hard!
Tell your loved ones that you appreciate them trying to make you happy but tell them what would help you. They don't know how to react if you don't tell them. Maybe you want to scream and cry while someone is by your side. Maybe you want to eat a pound of ice cream.
Maybe you just want someone to listen to you while talking about how unfair life is.
I would also highly recommend for you to look for other people in your area who have made the same experience. Nobody understands you really besides them. Also for me it was the best thing to see how their lives still go on and how they were so strong.
I don't know how this is organized where you live, but in my country we have private lessons for people going blind like cooking or walking with a cane. I am sure there will be some kind of organization that can help you.
You can still do so many things, but before you learn about that, you have to grieve your loss.
Take your time, be patient with yourself and honest with your loved ones.
What you experience right now is so terrible, a little self-pity should be allowed!
Take your time to grieve. You weren't naive! Losing your sight is fucking scary, sad, lonely and hard!
Tell your loved ones that you appreciate them trying to make you happy but tell them what would help you. They don't know how to react if you don't tell them. Maybe you want to scream and cry while someone is by your side. Maybe you want to eat a pound of ice cream.
Maybe you just want someone to listen to you while talking about how unfair life is.
I would also highly recommend for you to look for other people in your area who have made the same experience. Nobody understands you really besides them. Also for me it was the best thing to see how their lives still go on and how they were so strong.
I don't know how this is organized where you live, but in my country we have private lessons for people going blind like cooking or walking with a cane. I am sure there will be some kind of organization that can help you.
You can still do so many things, but before you learn about that, you have to grieve your loss.
Take your time, be patient with yourself and honest with your loved ones.
What you experience right now is so terrible, a little self-pity should be allowed!
poochbrah 6 points 4y ago
There's a book called feeling good by David burns. It's available in audiobook format too.
I'd strongly recommend reading this book as it has helped me immensely.
It's a book focused on cognitive behavioural therapy.
For me I thinking I was inadequate in some way as a result of my eye sight decreasing and this book really helped. He shows how you are cooling yourself when you give yourself these messages and that if you do encounter a psycial disability that yes it does limit you on some say but there are always countless other things that you can still do. Dwelling on a single negative aspect isn't realistic nor helpful.
I'd strongly recommend reading this book as it has helped me immensely.
It's a book focused on cognitive behavioural therapy.
For me I thinking I was inadequate in some way as a result of my eye sight decreasing and this book really helped. He shows how you are cooling yourself when you give yourself these messages and that if you do encounter a psycial disability that yes it does limit you on some say but there are always countless other things that you can still do. Dwelling on a single negative aspect isn't realistic nor helpful.
KarebearMom 3 points 4y ago
My 7 year old is legally blind due to Retinitis Pigmentosa. He knows he will be totally blind as an adult due to his specific genetic condition. At age 5, he had a really hard time accepting it, and we took him to a child therapist to help him work past his emotions. It really helped. Is therapy an option for you?
wilcoxc26 2 points 4y ago
We are here for you! Look up training in Orientation and Mobility, also Vision Rehab Therapy. These programs will find techniques and adaptations that work best for you and your vision!
They are extremely beneficial :)
They are extremely beneficial :)
jelly_bean_twist 1 points 4y ago
Acknowledge what you’re feeling and allow yourself to feel it. Frustration, anger, and pain are all normal ways to feel about losing your vision. If anyone in your life is giving you grief about how you feel, honestly, it’s ok to throw them the cold shoulder and/or explain to them that they are not being sensitive to your needs right now. I know it can feel extremely overwhelming and sometimes the whole thing just becomes too much to handle. When this happens, I would recommend trying to ground yourself in simple ways like focusing on your breathing or identifying things in your environment that you are familiar with. I’m so sorry you’re going through this. It’s hard. It doesn’t matter if you’ve known your whole life, that doesn’t make it any easier. Research or ask your doctor if there are any services available to visually impaired folks where you are and maybe reach out to them. If you can find a low vision support group, or blindness counseling it could help you feel a lot better. Stay strong.
individual865 1 points 4y ago
Same here, ROP, 30s, one good eye, sudden decline in vision in the last year. I’m trying to focus on just getting by, day by day. Hope things stabilize for you.
LittleLauraKaye 2 points 4y ago
Did you have other issues crop up along the way? My daughter had ROP - surgery at 3 months - then at around 14, lost vision in one eye due to glaucoma, and around 19, had cataract surgery on both eyes. She’s 21 now.
individual865 1 points 4y ago
Elevated IOP, currently on Xalatan and timolol to control, and have nuclear cataract. The cataract may be what’s messing my vision up, tbh. I’m trying to decide on the right time to go ahead with surgery,, worried about risk of retinal detachment/loss of near vision post surgery. What was your daughter’s experience with cataracts and cataract surgery like? Any improvement in vision afterwards?
LittleLauraKaye 2 points 4y ago
Her distance vision improved after cataract surgery. Wears glasses for up close reading.
[deleted] 1 points 4y ago
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