Blind and Visually Impaired Community
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Crisis of Identity? Adjusting to constantly fluctuating level of vision (self.Blind)
submitted by Dry_Director_5320
My eyes are fine. More worn down than they should be at my age (25) but otherwise fine. And some days I can see perfectly well, bar the constant photophobia. Point being, is some days I am just about fully sighted with just precautions against the light for comfort. But then other days, or really whenever and usually wi the no real warning, my vision is on a sliding scale of “everything is too bright and therefore harder to see and process” to “the world is nothing but light and it’s too painful to keep my eyes open for more than a quick blink”. I never know what I’m going to get, or how long it’ll stay one way or the other. I’m trying to adjust to the worse end of that spectrum because i know that it isn’t doing to get better. I’m all likelihood it’ll get worse as I age, but not totally sure since it’s a brain thing and we haven’t pinned down the exact underlying cause. But how am i supposed to get any sort of normalcy with my condition if I don’t know if I’ll be sighted or functionally blind when I wake up each morning for that day? Or if I’ll be blind that morning and full sighted in the evening? Any advice?
NoConfidence_2192 2 points 1y ago
If you are able to try reading $1 by Kenneth Jernigan. It's a fairly short article you might find interesting.
Dry_Director_5320 [OP] 1 points 1y ago
I cannot begin to express how grateful I am for you sharing that article. It really made me reconsider my perception of the term “blind” and the something of an identity tied to it. Thank you for giving me such a good prompt to think on.
NoConfidence_2192 2 points 1y ago
It sounds like your reaction was much the same as mine when I first read it.
This is what we're here for. You are not alone.
Stick around. Tell your story. Contribute. You will be surprised at how much people might understand as well as how something you might say could end up helping someone else.
Remember to enjoy the day.
This is what we're here for. You are not alone.
Stick around. Tell your story. Contribute. You will be surprised at how much people might understand as well as how something you might say could end up helping someone else.
Remember to enjoy the day.
puchuchita 2 points 1y ago
Hey, I'm in the same boat as you. I was diagnosed with Visual Snow Syndrome in 2020 after a random onset in 2019. It took many specialists and frustrating negative tests until I finally got the diagnosis from my regular ophthalmologist after I'd given up with all the specialists. This may or may not be what you have - it is worth looking it up! It is a rare neurological condition.
I also sometimes become totally bind for a couple of hours as I suffer from ocular migraines (also since 2019) which randomly make huge blind spots appear in my vision until the blind spots cover my entire visual field and I cannot see anything.
Some days, I can read and even watch TV if it's not too bright. Other days, my vision is almost completely useless, and the light is absolutely unbearable even with closed eyes or 3 layers of polarized sunglasses. Other days, my migraines make me totally blind. I am learning to use a white cane to get around on those bad days when I can't open my eyes.
My main advice is exactly that: learn to get around with no vision at all. Request a free white cane from the NFB and learn to use it. Learn to use the VoiceOver features in your phone and computer if you haven't already. It takes so much stress away from the situation if you know you can still get around and be independent even on the worst days.
Also, do NOT underestimate the power of meditation and prayer. Finding faith is crucial for peace of mind, It doesn't have to be faith in a God if you are not geared towards that, but faith in something other than yourself and your body is so important in overcoming physical adversity such as this. Finding a power to 'lean on', so to speak, is beautiful and priceless.
Please feel free to PM me and I will share my information with you so we can start a conversation. I know how you feel right now, and I have a lot of tips and advice to give. I am a few years younger than you (22) but I am sure I have some wisdom to share! I am much better at speaking (over the phone) than I am at typing for these sorts of things because there is just so much to say!
Best of luck! Please reach out!
I also sometimes become totally bind for a couple of hours as I suffer from ocular migraines (also since 2019) which randomly make huge blind spots appear in my vision until the blind spots cover my entire visual field and I cannot see anything.
Some days, I can read and even watch TV if it's not too bright. Other days, my vision is almost completely useless, and the light is absolutely unbearable even with closed eyes or 3 layers of polarized sunglasses. Other days, my migraines make me totally blind. I am learning to use a white cane to get around on those bad days when I can't open my eyes.
My main advice is exactly that: learn to get around with no vision at all. Request a free white cane from the NFB and learn to use it. Learn to use the VoiceOver features in your phone and computer if you haven't already. It takes so much stress away from the situation if you know you can still get around and be independent even on the worst days.
Also, do NOT underestimate the power of meditation and prayer. Finding faith is crucial for peace of mind, It doesn't have to be faith in a God if you are not geared towards that, but faith in something other than yourself and your body is so important in overcoming physical adversity such as this. Finding a power to 'lean on', so to speak, is beautiful and priceless.
Please feel free to PM me and I will share my information with you so we can start a conversation. I know how you feel right now, and I have a lot of tips and advice to give. I am a few years younger than you (22) but I am sure I have some wisdom to share! I am much better at speaking (over the phone) than I am at typing for these sorts of things because there is just so much to say!
Best of luck! Please reach out!
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