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I have hearing loss, and I’m going to lose my vision too - I’m only 17 (self.Blind)
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LisneyDand 29 points 3y ago
Consolation:
Your hearing loss isn't going to progress, right? So you should still be able to hear people and have conversations.
Macular degeneration is only the center of your vision. You will still be able to use your vision to get around, socialize, see new things, etc. It will just be different but you will adjust. If you Google search 'macular degeneration simulation' you can see examples. Also, pretty much everything nowadays has a 'virtual assistant' (Siri, Alexa, etc) that can even be linked to stuff like your thermostat. You can use something like Dragon Naturally Speaking to type. I'm sure people here have better or more specific recommendations. (Personally I am not blind; I'm subscribed here to lurk and learn.)
May I suggest therapy? It's very helpful for something like this (a stressful life change). I've benefited from therapy as have many close to me.
Your hearing loss isn't going to progress, right? So you should still be able to hear people and have conversations.
Macular degeneration is only the center of your vision. You will still be able to use your vision to get around, socialize, see new things, etc. It will just be different but you will adjust. If you Google search 'macular degeneration simulation' you can see examples. Also, pretty much everything nowadays has a 'virtual assistant' (Siri, Alexa, etc) that can even be linked to stuff like your thermostat. You can use something like Dragon Naturally Speaking to type. I'm sure people here have better or more specific recommendations. (Personally I am not blind; I'm subscribed here to lurk and learn.)
May I suggest therapy? It's very helpful for something like this (a stressful life change). I've benefited from therapy as have many close to me.
im_such_a_robloxnerd 16 points 3y ago
Thanks, that’s really reassuring :)
AlexandrinaIsHere 6 points 3y ago
Another sighted lurker- if you're concerned about your abilities in the future, you might consider learning Braille now. That'll help with things like knowing what button to hit in the elevator.
There are tricks you can learn now, while you aren't impaired and stressed. Like pouring coffee safely by curving your thumb into the cup so you know if it's nearly full. You can learn now how much of your thumb needs to be in the cup to have notice before it's too full.
It is easier to learn almost anything) if you have secured a method of getting your coffee first. Otherwise you'd be trying to navigate the world and not have coffee yet...
But rest assured that there is a nice community here of both blind and sighted redditors and for everything except driving- someone has a suggestion on how you can do it without reliable sight. This isn't the end, you just have a more complicated hand of cards than you wanted.
There are tricks you can learn now, while you aren't impaired and stressed. Like pouring coffee safely by curving your thumb into the cup so you know if it's nearly full. You can learn now how much of your thumb needs to be in the cup to have notice before it's too full.
It is easier to learn almost anything) if you have secured a method of getting your coffee first. Otherwise you'd be trying to navigate the world and not have coffee yet...
But rest assured that there is a nice community here of both blind and sighted redditors and for everything except driving- someone has a suggestion on how you can do it without reliable sight. This isn't the end, you just have a more complicated hand of cards than you wanted.
MelodicMelodies 5 points 3y ago
What a thoughtful and well-informed response from a lurker--I commend you!
Yep, all of this is true, op. I have friends that are both blind and hoh and they live pretty fantastic lives. It sounds like your hearing loss isn't that severe, but even if it were and you were thereby unable to use things like voice assistants or screenreaders, there are things called braille displays that would enable you to keep accessing information on technology. Look into therapy absolutely. Additionally, I would make sure that you have good rehab services--maybe receive training with regards to accomplishing tasks without vision? (ex: crossing streets, eating food, using computers, reading braille, home management and traveling). Find support groups--not just supportive friends and family, but people who have both of these identities?
Hopefully people that are actually both blind and deaf can weigh in on this, as I'm only totally blind. But I'm here to let you know that things will still be doable, if different.
Yep, all of this is true, op. I have friends that are both blind and hoh and they live pretty fantastic lives. It sounds like your hearing loss isn't that severe, but even if it were and you were thereby unable to use things like voice assistants or screenreaders, there are things called braille displays that would enable you to keep accessing information on technology. Look into therapy absolutely. Additionally, I would make sure that you have good rehab services--maybe receive training with regards to accomplishing tasks without vision? (ex: crossing streets, eating food, using computers, reading braille, home management and traveling). Find support groups--not just supportive friends and family, but people who have both of these identities?
Hopefully people that are actually both blind and deaf can weigh in on this, as I'm only totally blind. But I'm here to let you know that things will still be doable, if different.
Autumnwood 5 points 3y ago
Hello to you. I'm older and have some macular degeneration. I've been able to get injections for it, but I've definitely had to make some adjustments in my life. It helps me to look at all the positives. First, I can still see fairly well. I feel so blessed. It's made.me think about all the other things I do have in my life. When you start counting them and focusing on them, you feel so grateful and it's amazing how much we do have as opposed to how much we don't have.
There is a lot of good and helpful technology today. Some of it is still lacking but it's getting better. Start to get used to it and make use of it now.
It also helped me when I was first diagnosed to look up stories on the internet by those who have MD. There are so many many famous people. Judy Dench said a one page script for her is like, 32 pages and she needs help to buy tickets from the machines at the metro for example. When you read these stories you realize we adapt and function just in different ways that most of us take for granted until we experience a loss. Don Knotts was feeling down on himself when he had MD, but then one day he realized some folks would be happy to have the vision he had, and stopped feeling sorry for himself.
The best to you.
There is a lot of good and helpful technology today. Some of it is still lacking but it's getting better. Start to get used to it and make use of it now.
It also helped me when I was first diagnosed to look up stories on the internet by those who have MD. There are so many many famous people. Judy Dench said a one page script for her is like, 32 pages and she needs help to buy tickets from the machines at the metro for example. When you read these stories you realize we adapt and function just in different ways that most of us take for granted until we experience a loss. Don Knotts was feeling down on himself when he had MD, but then one day he realized some folks would be happy to have the vision he had, and stopped feeling sorry for himself.
The best to you.
HeftyCryptographer21 3 points 3y ago
I am actually in quite a similar situation as you. I was born Hard of Hearing (fully Deaf now), and started losing my vision about a year/year and a half ago. It can definitely be hard sometimes, and can definitely suck, but your life is by no means over. I'm afraid I don't know anything about your specific eye condition, but you should start learning braille before you need. If you can hear the electronic voice for voice over, try getting used to that, but if you can't, don't worry. Braille is the way to go. Also, you should consider how much of your hearing is actually lipreading and/or visual cues. If it is a big portion, you should consider learning to sign. Plenty of DeafBlind people, or Blind people with hearing loss sign using a tactile version of your countries sign language. Good luck!
BlueRock956 3 points 3y ago
You can advocate for yourself and push your school to provide services that you need to have access to an education. For instance, how to use a screen reader to use the computer. This is something that you'll need so request it.
niall_b 2 points 3y ago
Hi, there is a person your age on the r/deafblind reddit with limited vision fields and is a Deaf ASL user (most recent post). They were asking a about school help. If you want to connect with a peer who knows likely a lot more about the experience than most would you can find their post here:
https://www.reddit.com/r/deafblind/comments/ews5f4/school_help/?utm_medium=android_app&utm_source=share
https://www.reddit.com/r/deafblind/comments/ews5f4/school_help/?utm_medium=android_app&utm_source=share
HeftyCryptographer21 3 points 3y ago
Hey man. I just wanted to say that I think I am the person you are referring to, and that I would be totally down to connect with OP.
niall_b 3 points 3y ago
Thanks for noticing the post and reaching out. It's unfortunate there have been no response to your post on r/deafblind. I've been trying to clean up that sub and get it moving in the last few weeks. It may always be a slow moving sub, I'm not sure. My hope is that eventually I can get it moving a bit and get some Deafblind mods. I had a couple of people interested some time ago, but the users had a lot of difficulty accessing the mod tools. I'm wondering if the new mod panel and system will be better or not. This was years ago. Do you have any experience using adapted technology to run the mod panel yourself? Braille displays etc?
HeftyCryptographer21 3 points 3y ago
No worries man. I posted the question knowing full well that I may never get a response. I was mostly just trying to get another question on the sub. It's really great what you're doing for the sub. I don't have a lot of experience using a braille display because my braille reading speed is still quite slow, and I don't have one I can really use outside of school. Currently, I mostly just use tech to make text bigger. I use a CCTV, Zoom text for the computer, etc. I am sort of interested in becoming a mod for r/deafblind, and I was wondering if that was something that was needed?
niall_b 3 points 3y ago
That's great. I'd really like to have the sub properly represented by some members of the community. I was a deafblind Intervenor for a couple of decades with young children and have had some friends who are deaf/deafblind but I'm not deafblind myself. Eventually, if someone tries it and enjoys modding I'd be happy to hand over the lead so they can run with it.
I've seen your posts and can see you are invested in connecting and supporting the community. Would you be interested in hopping onto the dash and seeing if it's something you would be interested in trying? You are welcome to join at any level of involvement.
I've seen your posts and can see you are invested in connecting and supporting the community. Would you be interested in hopping onto the dash and seeing if it's something you would be interested in trying? You are welcome to join at any level of involvement.
[deleted] [OP] 1 points 3y ago
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