Blind and Visually Impaired Community
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I'm learning that my sighted days are numbered. What's next? (self.Blind)
submitted by liquidDinner
I have been diagnosed with retinitis pigmentosa and Stargardt's. The first will take away my peripheral vision and the second will make central vision severely hindered.
I'm not handling it very well. My wife is trying to be supportive, but it's hard for me to articulate how difficult this all is to process so as a result there's only so much she can do to help, only so little she can empathize. We have 3 children with a 4th on the way and I'm worried about the burden she'll have to take on when I can't be as helpful, but when she also needs to hold my hand while we are out.
I feel like I'm at my best when I'm planning how to face this rather than dwelling on the loss. I'm trying to read up on the different symptoms I'll be facing and what I can do to prepare for this next challenge in life.
If you or anybody you know has these conditions, how bad can I expect either to get? Will my peripheral vision go black? Will my central vision get any worse than an indecipherable blur? Should I start learning to read braille now while I can still legally drive?
I have other professional fears that I'm not looking forward to. I'm a web developer, but now I feel a heavy need to get out of that. Maybe I have put enough work in to get a management or director position somewhere. I'm also considering piling a lot of money into retirement now with the goal of retiring closer to 50, since an old blind guy isn't really on the top of most lists.
I'm confused and frustrated and sad. I don't know what to expect and I don't know how to face it.
I'm not handling it very well. My wife is trying to be supportive, but it's hard for me to articulate how difficult this all is to process so as a result there's only so much she can do to help, only so little she can empathize. We have 3 children with a 4th on the way and I'm worried about the burden she'll have to take on when I can't be as helpful, but when she also needs to hold my hand while we are out.
I feel like I'm at my best when I'm planning how to face this rather than dwelling on the loss. I'm trying to read up on the different symptoms I'll be facing and what I can do to prepare for this next challenge in life.
If you or anybody you know has these conditions, how bad can I expect either to get? Will my peripheral vision go black? Will my central vision get any worse than an indecipherable blur? Should I start learning to read braille now while I can still legally drive?
I have other professional fears that I'm not looking forward to. I'm a web developer, but now I feel a heavy need to get out of that. Maybe I have put enough work in to get a management or director position somewhere. I'm also considering piling a lot of money into retirement now with the goal of retiring closer to 50, since an old blind guy isn't really on the top of most lists.
I'm confused and frustrated and sad. I don't know what to expect and I don't know how to face it.
Blackphidora 9 points 6y ago
My father is RP. He also did web development as a hobbie for other people. Because he can't design worth shit I taught him to use WordPress, once the design is set he just adds to it as he needs.
I would recommend start learning how to use NVDA. It's a hell of a lot cheaper than JAWS. Just because your blind doesn't mean you can't do web development. There is still the non graphically intense side of computers. Such as web server administration and everything command line. Try and start learning how to use everything via the keyboard, And don't touch the mouse.
Yes, you are losing your sight. And yes. It does suck. But it not a barrier that stops everything. It just requires a little bit of creativity and is something you just need to accept.
You will be fine.
I would recommend start learning how to use NVDA. It's a hell of a lot cheaper than JAWS. Just because your blind doesn't mean you can't do web development. There is still the non graphically intense side of computers. Such as web server administration and everything command line. Try and start learning how to use everything via the keyboard, And don't touch the mouse.
Yes, you are losing your sight. And yes. It does suck. But it not a barrier that stops everything. It just requires a little bit of creativity and is something you just need to accept.
You will be fine.
liquidDinner [OP] 2 points 6y ago
I can do server administration fine. I do quite a bit of it already since our actual sys ad is too busy with a ton of other stuff, so I get everything ready and do all the debugging, he just makes it actually happen. My background is in network administration and I have a CCNA that has lapsed, web dev just happens to be where I landed. I don't live in a big market so tech jobs are few and far between.
I know it's not the end of the world, and I know there are people who still do these things while blind. I guess my feeling is that I just don't want to. I'm already doing development more because I need to and less because I want to, and being forced to do it through a bunch of visual aid tools isn't going to make me like the job more. I've already been considering making a change, this just adds to that desire. That being said, work is probably at the end of the list of my concerns. I can make it work, even if I don't like it.
My frustration comes from the things I'm going to miss in life, those things I've always had and never imagined I'd lose. I know I can move on, but right now it's still pretty fresh and it sucks.
With your father's vision loss, is it blackness or just heavy distortion? Do you know about when he'd say it peaked or started to become really noticeable?
I know it's not the end of the world, and I know there are people who still do these things while blind. I guess my feeling is that I just don't want to. I'm already doing development more because I need to and less because I want to, and being forced to do it through a bunch of visual aid tools isn't going to make me like the job more. I've already been considering making a change, this just adds to that desire. That being said, work is probably at the end of the list of my concerns. I can make it work, even if I don't like it.
My frustration comes from the things I'm going to miss in life, those things I've always had and never imagined I'd lose. I know I can move on, but right now it's still pretty fresh and it sucks.
With your father's vision loss, is it blackness or just heavy distortion? Do you know about when he'd say it peaked or started to become really noticeable?
Blackphidora 5 points 6y ago
As far as I'm aware. It's extremely heavy distortion. All he can really tell is light and dark. And that's even barely. He lost his licence at around 25. Used glasses until his 30s. He used a CCTV for reading paper for most of my life. Until he was around 45. I'm currently 22 and he is currently 55+.
He does not know how to read braile. Mostly because he tried learning at 48 range. But with the abundance of technology and audio tools knowing braile is not an absolute nessesary. But it might be a good idea to try.
Join webinars. They are like online conferences where you can ask questions and listen to experts. I know Freedom scientific does them. Im sure most exist.
Also. An insider's note. Take a look at a retinitis pigmentosa foundation. There are a few major genetic technologies coming out that need patient to test on. Such as Crisper and another sort of injection thing I have heard of.
I'll add more. Phone is dying
He does not know how to read braile. Mostly because he tried learning at 48 range. But with the abundance of technology and audio tools knowing braile is not an absolute nessesary. But it might be a good idea to try.
Join webinars. They are like online conferences where you can ask questions and listen to experts. I know Freedom scientific does them. Im sure most exist.
Also. An insider's note. Take a look at a retinitis pigmentosa foundation. There are a few major genetic technologies coming out that need patient to test on. Such as Crisper and another sort of injection thing I have heard of.
I'll add more. Phone is dying
Skriet 3 points 6y ago
I thought this comment was very comfortable https://www.reddit.com/r/Blind/comments/5627a2/comment/d8hmtht?st=IVYD3WP3&sh=68dfcd3e
liquidDinner [OP] 1 points 6y ago
Yeah, I think I saw that on bestof just around the time I started getting my eyes checked out. It was really relevant so I subbed.
-shacklebolt- 1 points 6y ago
First, you've come to the right place. You are not alone in this experience, and there are a lot of resources out there to keep doing what you want to do with your life.
> I'm worried about the burden she'll have to take on when I can't be as helpful, but when she also needs to hold my hand while we are out.
No matter what level of vision you end up with, or how your vision loss progresses, it is possible for you to remain a good parent, a contributor to the house, and to remain gainfully employed. There is no reason you will become a burden on anyone unless you don't get the help and tools that you need to move forward (and that's up to you.)
How is your vision right now? What sorts of local resources have you already been put in touch with? Do you mind sharing roughly where you live?
> I'm worried about the burden she'll have to take on when I can't be as helpful, but when she also needs to hold my hand while we are out.
No matter what level of vision you end up with, or how your vision loss progresses, it is possible for you to remain a good parent, a contributor to the house, and to remain gainfully employed. There is no reason you will become a burden on anyone unless you don't get the help and tools that you need to move forward (and that's up to you.)
How is your vision right now? What sorts of local resources have you already been put in touch with? Do you mind sharing roughly where you live?
KingFluffeh1 1 points 6y ago
Checkout Molly Burke on youtube. She's a blind youtuber who's also got RP. She could be of some help for you.
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