Blind and Visually Impaired Community
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Anyone here with pretty functional low vision that could deteriorate randomly or stay stable? (self.Blind)
submitted by Opa1plus
How do you deal with potential deterioration of your vision without knowing if it’ll ever actually happen?
I (29f) have the OPA1 genetic mutation and all the symptoms of classic optic atrophy. My vision has stayed stable since childhood and I pass as fully-sighted to folks who don’t know. My vision could continue to remain stable or it could deteriorate, and it appears that if deterioration occurs, it often occurs in one’s 30s.
I’m a bit terrified. My eye doctors have all said they think my vision will be stable but these aren’t optic nerve specialists. These are general ophthalmologists, low vision specialists and retina specialists. Perhaps I need to see an optho-nuero?
I believe I’ve been noticing decreased contrast vision, worsening night vision and less color perception. My acuity has stayed constant though (as of Aug 2021).
Part of me feels like I should “prepare” just in case. I don’t need to utilize a lot of low vision skills and resources but maybe I should learn how just in case I need to? And part of me thinks that’s a drastic overreaction and just to roll with it.
How do y’all manage this fear?
I (29f) have the OPA1 genetic mutation and all the symptoms of classic optic atrophy. My vision has stayed stable since childhood and I pass as fully-sighted to folks who don’t know. My vision could continue to remain stable or it could deteriorate, and it appears that if deterioration occurs, it often occurs in one’s 30s.
I’m a bit terrified. My eye doctors have all said they think my vision will be stable but these aren’t optic nerve specialists. These are general ophthalmologists, low vision specialists and retina specialists. Perhaps I need to see an optho-nuero?
I believe I’ve been noticing decreased contrast vision, worsening night vision and less color perception. My acuity has stayed constant though (as of Aug 2021).
Part of me feels like I should “prepare” just in case. I don’t need to utilize a lot of low vision skills and resources but maybe I should learn how just in case I need to? And part of me thinks that’s a drastic overreaction and just to roll with it.
How do y’all manage this fear?
NoConfidence_2192 6 points 1y ago
>How do y’all manage this fear?
It's not like we have much choice. We can either accept things as they are, adapt, and continue to live Life, or we can shut ourselves in and try to hide from the world. I have seen what the latter looks like and that is not anything I want for myself, so accpting, adapting, and living is the path I daily fight to stay on...sometimes with better success than others.
>Part of me feels like I should “prepare” just in case.
Why not? Sounds like a good plan to me. Are you really doing anything better or more important right now? It will give you the chance to learn and pick up new skills. If it turns out you do need them you will already have some of the skills you'll need to function so there will be less need to be afraid. If it turn out you do not, you will have had the chance to understand those of use that do need them a bit better...and most of us aren't all that awfil to know.
You have handled the challenges thrown at you so far. You will do the same with whatever comes next as well.
Now, take a deep breath then slowly let it out, focusing on the sound and feel of the air going in and out. Then think of something you can do to brighten the day of a friend, family member, loved one, coworker, or neighbor...even a stranger will do in a pinch. Then go out and do it. That's something that makes me feel better every time.
Have a very good day!
It's not like we have much choice. We can either accept things as they are, adapt, and continue to live Life, or we can shut ourselves in and try to hide from the world. I have seen what the latter looks like and that is not anything I want for myself, so accpting, adapting, and living is the path I daily fight to stay on...sometimes with better success than others.
>Part of me feels like I should “prepare” just in case.
Why not? Sounds like a good plan to me. Are you really doing anything better or more important right now? It will give you the chance to learn and pick up new skills. If it turns out you do need them you will already have some of the skills you'll need to function so there will be less need to be afraid. If it turn out you do not, you will have had the chance to understand those of use that do need them a bit better...and most of us aren't all that awfil to know.
You have handled the challenges thrown at you so far. You will do the same with whatever comes next as well.
Now, take a deep breath then slowly let it out, focusing on the sound and feel of the air going in and out. Then think of something you can do to brighten the day of a friend, family member, loved one, coworker, or neighbor...even a stranger will do in a pinch. Then go out and do it. That's something that makes me feel better every time.
Have a very good day!
TechnicalPragmatist 2 points 1y ago
There would be no harm nor would it be bad too learn and may be good to know it so in case you do as you said you’d have some skills, and if you don’t you’d have a safety net.
Tasdigo 3 points 1y ago
I’m in a similar situation and I have been hoping for the best but preparing for the worse. I have been learning Braille for two years. I know how to use VoiceOver pretty well. Even if I don’t ever have to use the skills full time they come in handy. I use JAWS all the time when my eyes are tired. Learning the shortcuts alone have helped my work flow. Preparation is good.
TechnicalPragmatist 2 points 1y ago
That’s really good to hear. I think that’s the smartest plan of action. Trust me if you ever lose it all you won’t regret it.
Fireads 1 points 1y ago
I feel like I just read my own story. I decided just now to look for people dealing with similar issues to me and here I am.
I have hereditary macular degeneration, a disease called Best's (irony 🤷). It's a genetic thing my father and all his brothers had, so have seen people progress with it. It's not guaranteed to take any particular path though honestly. Mine progressed to a low vision state when I was young and been pretty stable since. It could get worse any ol time.
I knew I always had *bad* eyesight but its only been in the last ten years where this situation was confirmed for me and I've come to terms with it. Identifying as someone with a disability has helped. Also: Trying to find out support options and tools etc before it gets too bad, particularly at work. Learning to ask for help. Not beating myself up for missing something visually.
I have hereditary macular degeneration, a disease called Best's (irony 🤷). It's a genetic thing my father and all his brothers had, so have seen people progress with it. It's not guaranteed to take any particular path though honestly. Mine progressed to a low vision state when I was young and been pretty stable since. It could get worse any ol time.
I knew I always had *bad* eyesight but its only been in the last ten years where this situation was confirmed for me and I've come to terms with it. Identifying as someone with a disability has helped. Also: Trying to find out support options and tools etc before it gets too bad, particularly at work. Learning to ask for help. Not beating myself up for missing something visually.
SoapyRiley 1 points 1y ago
I have glaucoma that is rapidly advancing despite treatment thanks to my chronic migraine condition. I just prepare for the absolute worst outcome (total blindness-no light perception) and hope I’m over-prepared.
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