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Blind and Visually Impaired Community

Full History - 2022 - 01 - 30 - ID#sgo3jh
24
I’m going blind (self.Blind)
submitted by Lord_Tyrans
I have choroderimia and it is a slow process for going blind but I’ve just been wondering if there is anything i should do/ learn while im still young and can see? I live in usa
simplychanel 15 points 1y ago
I’m so sorry!!! The first thing that comes to mind is to learn Braille as early as possible and look for resources or services in your area that can help you better whether it’s visually impaired/blind service providers or a support group that you could talk things through with. Wishing you the absolute best ❤️
Lord_Tyrans [OP] 3 points 1y ago
Will do!
Tasdigo 2 points 1y ago
Braille will be a huge help in your future education and job training when your sight is gone. Make a plan for your life. Don’t just let your life happen to you!
cas0027 6 points 1y ago
My father lost his vision and I’m sure you’re way more technical than him but learning how to use voiceover on the iPhone can be a huge advantage as more things move to digital.
PaleontologistTrue74 5 points 1y ago
I have rp. Similar to yours it's slow progression.
Editing. Saw your age. I was diagnosed at 14 [24 now]. It gets easier. Abuse the systems in place for you to flourish. Theres no shame in taking the less thorny path especially with us who have a disability. People have fought for us to gain benefits. Use them if you can.

Thing to do.

1# Get a therapist. Even if you dont think you need it the caveman brain is a complex mine field for disabilities like ours. Someone smarter then me once said that the modern man is born with outdated cave man programs. Survival instincts for example. Community dependency for another example.

2# sign up for social security. Even if you plan to never get on it fully, the paperwork is eternal. Once in the system you remain in the system. The hardest part is getting in the system.

Edited note: Unsure if they can do anything for minors at this time. Check them out incase. Inform your parents they must be present. Social security card plus birth certificate is required. Dont trust sus phone calls and instead meet face to face if possible.

- why would you want in the system? Programs that assist in blind training/college/living accommodations often rely on that systems base paperwork. It will save you more time in the long run and less paperwork. If at any time you need to go on disability, the process for re approval will be a breeze since you jumped through the hoops already.

3# start a nest fund via savings account. Lock the account so money cant be taken out until 10 years. Deposit 20 bucks in per month. The reason for this is for a " oh shit " moment. For normal folks it's easier to dodge " oh shit " moments but for us it's a possibility we can prep for in advance.

Edited note : ask your parents to do this via allowance.

- what If it's a ohshit moment during the 10 years? The bank will unlock the savings account for emergencies. Also, if you have a loved one that you can trust you can set up a signature function where their signature auto unlocks the account. They cant unlock without your in person permission via bank teller. This is common for minors but also can be used for adults.

4# ultimately this is up to you and your preferred choice. Go to specialists for yearly check ups. After a few years they will have data on you and your disability. This will also help with doctors having more research. Assisting in the " cure " in many ways while also keeping you informed on potential treatments. Theres allot of stuff coming out soon. Level of sci fi fixes.

Edited note : inform your parents that the hotel is covered by insurance. They will reimburse you for travel expenses such as flying or even gas/renting a car.

5# join a group for your specific disability. This place is great for general information and support. Going specific can assist with information on delaying progression or other things uncommonly known about your disability. Even tho it's centered in your eyes, it can still affect your whole body.

Hope this helps.
Lord_Tyrans [OP] 3 points 1y ago
Thank you so much
PaleontologistTrue74 2 points 1y ago
No problem. If you got any follow up questions or need clarifications lmk
wonder_wolfie 4 points 1y ago
1. Learn braille as soon as possible, it’ll allow you to hit the ground running when you do need it. There’s tons of contractions in English braille and things to learn, and work on tactile sensitivity if you have trouble with that. Finding blind organisations can be a huge help with braille, they can provide advice, tools for learning and reading material to practice or read for fun later on.

2. Figure out which everyday skills/adaptations you’ll need as a blind person that you don’t yet have. My relative that went blind from diabetes had a good way of identifying problem areas - she put on a blindfold and did everyday things at home for an hour or longer, and noted things she couldn’t do. That way she could work on it/come up with solutions/buy things while she still had some sight.

3. If there are any routes you walk/commute very often, take time and get to know them really well. Getting around with no sight is one of the hardest things, so getting familiar with surroundings and the cane helps. Blind organisations are a big help here again - taking a mobility and orientation class ahead of time could be very beneficial.

4. Learn your phone configuration (where everything is), set it up efficiently so it’ll be easier to use with a screen reader and try to remember it. Will help you get faster at using it later.

Best of luck, I hope your sight hangs around for a while and that you have a smooth transition :)
CarpeNatibusNA 4 points 1y ago
Hi, I have retinits pigmentosa and my mentor has CHD like you. Were both adults now. But we've been thinking of starting a social club for teens and young adults with eye diseases similar to ours to connect, make friends, and share stories. Let me know if this is something you would be interested in!

As far as what you can do now, Id recommend to start learning how to use a cane before you need it.
Lord_Tyrans [OP] 3 points 1y ago
This is awesome! I would love to see a group
CaramelToffee12 3 points 1y ago
Braille! Maybe practice navigating with a cane also. Look into service dogs? Also I’m sorry you’re going blind, it’s a traumatic experience, but it’s not the end of your life! You can still live a rich, fulfilling life once you do go blind, it’s not ‘all over’ once you do :)
OldManOnFire 3 points 1y ago
Sorry to hear that. How old are you?
Lord_Tyrans [OP] 6 points 1y ago
I’m 13
OldManOnFire 4 points 1y ago
It's late here. I'm going to bed but I'll write back in the morning and answer your question as best I can.
Lord_Tyrans [OP] 5 points 1y ago
Thnx
OldManOnFire 9 points 1y ago
Good morning.

Yes, there are a lot of things you should do while you can still see. Some of them are practical and you'll instantly understand why I suggest them. Others aren't practical at all but don't ignore them - they're the most important ones. Please try to keep that in mind. There's much more to living a good life while blind than knowing how to do blind stuff.

Going blind doesn't come with instructions. Nobody tells us how to act or what to do. If you're like me you're not only the only blind one in your family, you're also the only blind person you know. I'd met a blind person before, but interacting with someone for five whole minutes years and years ago didn't help prepare me for going blind myself. What I'm trying to say is it can be a very lonely and confusing process. How are you supposed to act blind? How do you fit the expectations people have of blind people? Should you even try? What about your plans to be a fighter pilot or a submarine captain or a professional pickle ball player?

Nobody answers those questions for you. Nobody knows what to say. Blindness is rare enough that almost all of the sighted people in the world haven't had to deal with us before and they have no idea what to tell us when we ask.

That sounds discouraging, but it's not. It's lonely, that's all. It's not discouraging because it means you're in charge. You're going to make your own decisions without much outside influence *because the outside world doesn't understand.* You are the world's leading expert on knowing what you want, what you need, what you don't like, and who you want to be. That's way more true when you're blind than it was before. Blindness is oddly empowering. You loose so much in some sense but you gain a life of your own, a life deliberately chosen by you that isn't influenced by pop culture or your peer group or society's expectations.

Going blind is a great big reset button. It's a chance to start your life over. What will you do with it?

Let's get to the meat of your question. What should you learn?

Choroderimia. Learn everything there is to know about it. Not the kid's version, read the scientific papers and the medical journals. Really understand the hows and whys of what's happening to you.

Learn what resources are available from your local blindness group. They had stuff I didn't even know existed, things like talking alarm clocks and bowls with inner lips built in so you don't spill your soup, and different kinds of software to read web pages aloud. You might not want a guide dog or a white cane or a talking alarm clock yet but there's peace of mind knowing those things exist for you and knowing who to call to get them.

Start a blind bucket list. I don't know how much time you have before you can't see anymore but use it to make visual memories of the people you care about. Go camping with friends, canoe down a river, sled down a hill, put on some boxing gloves and throw some punches in the ring, paint a picture. Trust me on this one - I've learned it's not the things we do that we end up regretting in life, it's the things we didn't do when we had the chance. You might not have a lot of time to make visual memories so use the time you have to do as much as you can. When you get to be my age and the only things you can still see are the memories in your head you'll be glad you didn't skip out on the day in the batting cages to play some more Wordle.

If you're reasonably coordinated you don't need to practice with a white cane. Seriously, a few minutes with one and you're already good at it. It's very intuitive. r/Blind's O&M instructors - the people who teach classes on how to use white canes - reading this are already reaching for their keyboards to tell me how wrong I am but seriously, you already know who to use one, just like you already put your hand out in front of you and feel for the wall when you're walking in a dark room. It's the same instinct. A class or two for a white cane is fine, but don't worry about it being hard to learn. You already know how to use it.

Many people will tell you to learn Braille, but I haven't and don't intend to. Braille is cool but is it necessary? If your phone can read any book or magazine or blog or web page to you, why bother with Braille? I think Braille is like spinning your own thread to weave your own cloth to sew your own clothes. Very cool, and something to feel proud of, but more as a hobby than a necessity.

Finally, one more peace of mind thing. Money. How will you get money? That's a question we all think about when we first get the diagnosis. Life generally costs a little more for the blind while we often end up earning less than average. I don't have any career advice for you, but the people at Lighthouse or NFB will. So will your state's workforce service commission. The important thing here is not to despair. Know what options are available, what services and training opportunities are available, and which career paths are as accessible to you as they would be to anyone with 20/20 vision. You don't need to decide today but knowing what your options are and where to find help when you need it will bring peace of mind.

Going blind is hard but being blind isn't. You'll grieve the loss of your eyesight, but that's sort of expected. The unexpected part is you'll grieve the loss of your potential. You'll grieve the loss of your purpose, maybe even the loss of your identity. It's hard. You'll probably get pissed off, jealous, depressed, and wonder if you somehow deserve this. All of this is natural. Really, I'd be more worried about someone who got a life changing diagnosis and *didn't* react to it. The grief is natural. It's normal. It will pass. You will remain.

Once you get through the emotional part you'll find actually being blind isn't hard at all. I wouldn't have believed that if you told me before I went through it myself but it's true. Blindness is more of an inconvenience than a tragedy. I'm still me - Star Wars nerd, math nerd, eighties music nerd, teller of dad jokes, and Dr Pepper connoisseur. Going blind changes everything but it doesn't change anything, if that makes sense. The great big reset button resets everything except you. You'll still be you.

I hope something in here helps. I know how unfair and painful it feels when you first get the diagnosis. Just remember after all those feelings go away you'll still be here and life will be okay.

You've got this. r/Blind is always here to answer any questions you have or for those times you just need to rant about how unfair it all is.
TechnicalPragmatist 1 points 1y ago
Okay I was reading the thread and saw your age.

Immediately start an iep I mean as soon as you can and request blind services. Teacher for the visually impaired even if she’s an itinerate teacher. Comes and just works with you or several times a week.

Get mobility training now and have the districts orientation and mobility work with you immediately. Learn how to use a cane, and be blindfolded and learn to travel as a total just in case you ever need it.

Learn how to use assistive tech there can be a class and this is what your tvi can do with you when you work together and also braille.

Also learn ILs. Training.

There may be a way to go to blind summer camps at a nfb location or a state location to learn to live independently though there have been some bad stuff coming out about what they do and how some predators are there, but as long as you know and are careful and don’t fall for them it may be okay. But yeah.. that’s usually the bigger name centers though.


After high school you can go for a year to this training center too even if it’s a state one to learn for a year how to live on your own as a blind person.
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