Blind and Visually Impaired Community
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Stargardts (self.Blind)
submitted by ArchCarcass
Stargardts can affect central vision as well as colour vision. It can also leave you with black spots/spots of no sight.
I was diagnosed at 13, 5 years later am I now really beginning to feel the emotional consequences of this.
I want to become a session musician. Today, for the first time I couldn't see my fretboard whilst playing.
I need to be able to lug heavy gear around and be able to travel around, but legally I can not drive.
People that know I have this take the piss out of me in a "banter way'.
"Why are you holding your phone so close!"
"Youre so blind!"
"Can you not even see that! Oh my god why are you so blind!'
They laugh after they say these things. I don't show it, but it really upsets me.
People constabtly forget I am blind. I know it is not thwir fault, but it is still upsetting when they hold up something and ask me what it is.
I don't know what it is, I can't see it.
I just feel really disheartened. I am sad. Angry. Upset.
I have had years of therapy for other issues such as ADHD and BPD, but never for this.
All my peers have the ability to make a living from playing music (earning £300 a gig) and I feel like I don't due to my eyesight.
TL;DR
Ranted about losing my eyesight anf how I feel hopeless about my future career.
I was diagnosed at 13, 5 years later am I now really beginning to feel the emotional consequences of this.
I want to become a session musician. Today, for the first time I couldn't see my fretboard whilst playing.
I need to be able to lug heavy gear around and be able to travel around, but legally I can not drive.
People that know I have this take the piss out of me in a "banter way'.
"Why are you holding your phone so close!"
"Youre so blind!"
"Can you not even see that! Oh my god why are you so blind!'
They laugh after they say these things. I don't show it, but it really upsets me.
People constabtly forget I am blind. I know it is not thwir fault, but it is still upsetting when they hold up something and ask me what it is.
I don't know what it is, I can't see it.
I just feel really disheartened. I am sad. Angry. Upset.
I have had years of therapy for other issues such as ADHD and BPD, but never for this.
All my peers have the ability to make a living from playing music (earning £300 a gig) and I feel like I don't due to my eyesight.
TL;DR
Ranted about losing my eyesight anf how I feel hopeless about my future career.
Jayb0b 5 points 5y ago
My wife and Brother in Law both have Stargardts. Stay strong my friend.
ArchCarcass [OP] 1 points 5y ago
Thank you. :)
Inthemoment8 4 points 5y ago
It certainly isn't easy trying to describe to others what your functional vision is like. DM me if you want to talk more about it.
ArchCarcass [OP] 1 points 5y ago
Thank you, it is appreitiated.
Amonwilde 3 points 5y ago
I'd start taking an interest in technology that can help you do your work at the level you think you need to be. For example, you may be able to use an iPad with high contrast or magnification to read music even if you can't see paper. This may require a lot of work researching apps or modifying stands to accommodate different equipment. This can take a lot of effort but it's something you might just have to accept as necessary. When I look at successful blind or low vision people, a common thread is that they're comfortable with technology, even if their sighted peers have no need to tech to do the same work.
ArchCarcass [OP] 1 points 5y ago
Thank you for taking the time to comment. This is certaintly somethong on my To do list, but have not yet started.
blindjo 2 points 5y ago
Hey, i'm sorry to hear about all of your issues. I have a juvenile form of MD which may or may not be startgardts (havent done the genetic testing yet) and i get the frustration.
Its been almost four years for me, and even though i'm overall doing okay now (going to college, working two jobs), there still are those occasional days where i just want to say "screw it all."
If you ever need to talk, send me a message
Its been almost four years for me, and even though i'm overall doing okay now (going to college, working two jobs), there still are those occasional days where i just want to say "screw it all."
If you ever need to talk, send me a message
ArchCarcass [OP] 2 points 5y ago
Aw thank you. :) This was definitely one of those days.
blindjo 2 points 5y ago
Hang in there friend. I have a pal with stargardts whose majoring in music (she plays the clarinet) and she's pretty damn awesome.
I can feel you on the heavy equipment- i'm a visual artist (ikr) and i have to use larger canvases and whatnot just so i can see my work. Yeah, it can be really frustrating to have to put in twice as much work and time as my sighted peers just to have them qualify my things just as "good, for a blind person." But for me, worth it in the ejnd to be able to make things that i'm proud of.
It might hurt now, but sometimes you just gotta laugh at the sighties. A lot of people won't understand us and that's really annoying, but you have to remember that you're awesome
I can feel you on the heavy equipment- i'm a visual artist (ikr) and i have to use larger canvases and whatnot just so i can see my work. Yeah, it can be really frustrating to have to put in twice as much work and time as my sighted peers just to have them qualify my things just as "good, for a blind person." But for me, worth it in the ejnd to be able to make things that i'm proud of.
It might hurt now, but sometimes you just gotta laugh at the sighties. A lot of people won't understand us and that's really annoying, but you have to remember that you're awesome
ArchCarcass [OP] 2 points 5y ago
You've given me more hope, thank you. It's just really frustrating y'know.
I don't know anyone else who has this or is partially sighted, did it help you to know people who are?
I don't know anyone else who has this or is partially sighted, did it help you to know people who are?
blindjo 2 points 5y ago
Yes, it definitely helped to know others! Growing up, i was surrounded by sighted people only, so when the vision loss occured, my parents took me to a place called the braille institute. They had a lot of fun afterschool programs for teens with visual impairments. We did everything from cooking to improv to river rafting! The best part for me was being able to hang around other people like me and getting to feel "normal" again.
If there's a group for/of the blind by where you live, i'd really recommend reaching out. Sometimes it just helps to have other people who understand you nearby.
Hold onto that hope and don't give up on your music!
If there's a group for/of the blind by where you live, i'd really recommend reaching out. Sometimes it just helps to have other people who understand you nearby.
Hold onto that hope and don't give up on your music!
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