Blind and Visually Impaired Community
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Do any of you have days where you're very aware of your blindness? (self.Blind)
submitted by Metallbran88
I'm 32, I have Optic Nerve Hypoplasia and Nystagmus. I'm completely blind in my left eye, and have no peripheral vision in my right eye. Most days I'm fine, my lack of vision doesn't bother me. I don't use a cane or where glasses and for the most part I try to live my life like I don't have any visual issues, and I'm well aware that I could have more visual or health issues than I do.
Then there's other days where I'm very aware of my blindness. I'll catch myself turning my head at odd angles to focus better and I'll catch myself doing it, and become pretty self conscious especially if it happens in front of anyone but my wife, my parent's and my brother. And then there's battling my nystagmus constantly having my eyes moving and twitching. I do the exorcises but those only do so much. I hate making eye contact because then my eyes go crazy or I'm worried I'm turning my head to much, I try to aim with my nose if that makes any sense.
I used to struggle with accepting my limitations and realizing it's not my fault, or that it's ok to need help which I hate asking for. When I was younger I tried to pretend I was "normal." I once met someone when I was a teenager at a store, she was shocked she'd never met anyone who had what I had, ONH and Nystagmus. She had questions and wanted to talk. I was insecure and had my little girlfriend and other friends around me so I blew her off. It's something has bothered me since. I then met a dad when I was working once, who stopped me he instantly new what I had. He told me his son had it and that he (the dad) was scared and didn't know how to help him. Being a few years older and remembering my experience the last time I talked with the dad for a long time. I think he felt better after and I know I did.
Normally I'm good and everything's fine and then there's days like today, which made me want to reach out on here. I don't really know anyone who deals with any, some, or more of these things. I'd be interested to hear your thoughts, stories, or whatever you'd like to share. Sorry if my overshared or if my thoughts seem a bit random. This was a very spur of the minute post that kinda turned into something else.
Then there's other days where I'm very aware of my blindness. I'll catch myself turning my head at odd angles to focus better and I'll catch myself doing it, and become pretty self conscious especially if it happens in front of anyone but my wife, my parent's and my brother. And then there's battling my nystagmus constantly having my eyes moving and twitching. I do the exorcises but those only do so much. I hate making eye contact because then my eyes go crazy or I'm worried I'm turning my head to much, I try to aim with my nose if that makes any sense.
I used to struggle with accepting my limitations and realizing it's not my fault, or that it's ok to need help which I hate asking for. When I was younger I tried to pretend I was "normal." I once met someone when I was a teenager at a store, she was shocked she'd never met anyone who had what I had, ONH and Nystagmus. She had questions and wanted to talk. I was insecure and had my little girlfriend and other friends around me so I blew her off. It's something has bothered me since. I then met a dad when I was working once, who stopped me he instantly new what I had. He told me his son had it and that he (the dad) was scared and didn't know how to help him. Being a few years older and remembering my experience the last time I talked with the dad for a long time. I think he felt better after and I know I did.
Normally I'm good and everything's fine and then there's days like today, which made me want to reach out on here. I don't really know anyone who deals with any, some, or more of these things. I'd be interested to hear your thoughts, stories, or whatever you'd like to share. Sorry if my overshared or if my thoughts seem a bit random. This was a very spur of the minute post that kinda turned into something else.
Lyssa221201 2 points 2y ago
I have the same condition you do and yes. So often. I'm in college right now and most days I'm fine. I use my assistive tech and just go about my day. Then there are days (especially lab days) where I can't see anything we are doing and everything my professors do to try and help don't work. I usually get those assignments waived or alternate ones because they think it wouldn't be fair to have me fail the assignment because I can't see what I'm doing but it really makes me feel useless. Everyone else is working at their scopes or whatever and I'm just sitting there waiting for them to be done so we can move to the stuff that I can do. It really doesn't happen very often but there are few times that I am more aware of my limitations.
Then there are the days where I trip over everything and bonk my head off my loft bed every time I turn around and I realize how blind I am those days too lol. Not as bad a feeling as the first scenario, just more of a wow, I really can't see type of thing if that makes any sense.
Then there are the days where I trip over everything and bonk my head off my loft bed every time I turn around and I realize how blind I am those days too lol. Not as bad a feeling as the first scenario, just more of a wow, I really can't see type of thing if that makes any sense.
DrillInstructorJan 2 points 2y ago
Oh hell yes some days it gets under your skin. I find mainly it's work related, usually when I know I have a massive series of travel links I have to make after a long day working with assholes at the end of a long week. In that situation if someone doesn't turn up as arranged I have to bite my tongue because I am desperate not to become THAT disabled person. It's my problem to deal with and I will deal with it. But yes, moments like that can mean I'm hell to be around for 24 hours.
The thing is, it's that sort of stuff that keeps me honest, the way I think about it. If I find myself in a situation where I don't have a plan B that is not too much hard work, I didn't prepare properly. Not wanting to have the frustration cave in on me is a motivation to make sure it doesn't happen. I don't always win but I guess I'll die trying.
The thing is, it's that sort of stuff that keeps me honest, the way I think about it. If I find myself in a situation where I don't have a plan B that is not too much hard work, I didn't prepare properly. Not wanting to have the frustration cave in on me is a motivation to make sure it doesn't happen. I don't always win but I guess I'll die trying.
viciousSnowFlake 2 points 2y ago
Yuuupp. I find that lack of sleep, dehydration, and not eating really mess with my vision.
123_heyo 1 points 2y ago
Yes all the time. I’ll be like ‘wow you’re being very blind right now’ or ‘friendly reminder that other people can see’. Also I have optic nerve hypoplasis too!
moonpegasus19 1 points 2y ago
I have septo optic displaysia, and I've been totally blind since birth, and I still have those days. The best thing I have learned is that there are multiple ways of doing things. Don't let any person, blind or sighted, tell you that you shouldn't do something. I have a really hard time traveling, and I used to fret over it all of the time. I put myself through lots of training, not necessarily to improve my skills, but so the anxiety, and self conscious feelings would go away, but recently I just made up my mind that I don't have to be superwoman, and if I have a choice in the matter, I'll either get a volunteer to do something, or pay for someone to do it things if I am to uncomfortable with it, and if I need to do something another way because it's more comfortable for me, then I'll do it as long as it's not hurting me, or someone else. Don't be embarrassed about your vission, just live life the way you want. Don't worry about sighted people, they are just wanting to live their lives, and don't really care that much about you, which is a blessing in disguise sometimes.
the-cat1513 1 points 2y ago
Hello! I am totally blind.
Even though I am blind from birth, there are times that such a thing happens to me, both with small things and with big things.
Sometimes, because something triggers such thoughts or because I had a bad day or for whatever reason, my brain reminds me of everything that my blindness prevents me from doing.
A few examples of small things is not being able to watch series and animes with my brother because I don't know Japanese, or not being able to do things like find a new kiosk that I don't know without visual aid, or see one of my dreams from when I was a child impossible, to join the army of my country, like my father.
Other things, not so small I suppose, are the problems to get to unknown places or to guide me through my university (very, very inaccessible). Also, that sometimes I am excited to try to start new activities, but then come to the conclusion that they are impossible for me.
For example, although I train bjj, I will not be able to practice MMA or Muay Thai, much less will I be able to participate in EMA.
Also, I struggle a lot with mathematics in my university career (one related to computer science) not so much to understand the concepts, but to adapt it for the nvda.
Among many more problems with technology (not being able to play games that I love or struggle with the linux screen reader)
I think it was too long. I hope it's understandable, English is not my native language
Even though I am blind from birth, there are times that such a thing happens to me, both with small things and with big things.
Sometimes, because something triggers such thoughts or because I had a bad day or for whatever reason, my brain reminds me of everything that my blindness prevents me from doing.
A few examples of small things is not being able to watch series and animes with my brother because I don't know Japanese, or not being able to do things like find a new kiosk that I don't know without visual aid, or see one of my dreams from when I was a child impossible, to join the army of my country, like my father.
Other things, not so small I suppose, are the problems to get to unknown places or to guide me through my university (very, very inaccessible). Also, that sometimes I am excited to try to start new activities, but then come to the conclusion that they are impossible for me.
For example, although I train bjj, I will not be able to practice MMA or Muay Thai, much less will I be able to participate in EMA.
Also, I struggle a lot with mathematics in my university career (one related to computer science) not so much to understand the concepts, but to adapt it for the nvda.
Among many more problems with technology (not being able to play games that I love or struggle with the linux screen reader)
I think it was too long. I hope it's understandable, English is not my native language
AlwaysLilly 1 points 2y ago
I don't have the same eye conditions, but I can 100% relate to the sentiment and was thinking of making a similar post when I saw yours.
It can be hard to go from feeling like you're adapting well and finding ways to make thing work for you, and then have a total 180 and feel unsure of yourself.
Example--Yesterday, I went on a bike ride with my family on this beautiful trail that was mostly flat but as we went on, my vision just got worse. We only did an 8 kilometer ride as the kids were tired. I struggled almost the whole time. Between the visual stimulation and my double vision acting up, it almost felt like being drunk and I relied a lot on the sensation of my bike and how it all felt. Thankfully my husband drove so I was able to just close my eyes most of the way home.
I am trying to tell myself I just have to learn what works for me and what doesn't and be more vocal about when I need help, but it's challenging when you aren't sure what you need or how an activity will affect you until you're doing it.
It can be hard to go from feeling like you're adapting well and finding ways to make thing work for you, and then have a total 180 and feel unsure of yourself.
Example--Yesterday, I went on a bike ride with my family on this beautiful trail that was mostly flat but as we went on, my vision just got worse. We only did an 8 kilometer ride as the kids were tired. I struggled almost the whole time. Between the visual stimulation and my double vision acting up, it almost felt like being drunk and I relied a lot on the sensation of my bike and how it all felt. Thankfully my husband drove so I was able to just close my eyes most of the way home.
I am trying to tell myself I just have to learn what works for me and what doesn't and be more vocal about when I need help, but it's challenging when you aren't sure what you need or how an activity will affect you until you're doing it.
UpsideDownwardSpiral 1 points 2y ago
Hey, I have some optic nerve damage that has left me with blindness in my right eye and no peripheral vision in my left, so I guess we kind of mirror each other in that sense.
I don't have nystegmus, but I definitely do have a lot of trouble with eye twitching and weird movements when I am tired, stressed or overwhelmed and dehydrated. Theres days where I notice my blindness more. Almost as if I can see out of my blind eye, but it's being covered by a hand. I don't even have light perception in my blind eye, so it's definitely a weird feeling.
Other days are better, and I won't really notice it.
I don't have nystegmus, but I definitely do have a lot of trouble with eye twitching and weird movements when I am tired, stressed or overwhelmed and dehydrated. Theres days where I notice my blindness more. Almost as if I can see out of my blind eye, but it's being covered by a hand. I don't even have light perception in my blind eye, so it's definitely a weird feeling.
Other days are better, and I won't really notice it.
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