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Anyone blind/visually impaired? - September 30th 2013, 03:55 PM

I have permission from Kakorrhaphiophobia to post this thread, even though there's another one like it. I'm not able to reply to it, so I asked her if she could re-open the thread, to which she said no, but that I could post another one like it.


I was wondering is there any other TH user who's blind and or visually impaired and who struggles with Mental Health issues or Eating Disorders?


I feel like I'm weird because I'm losing my vision and I'm dealing with body image and skipping meals.


I also have PTSD and Depression. Currently, I'm having trouble with the fact that I'm starting to lose my vision, and there's nothing the doctors can do about it. I have ROP and eventually everyone with that eye condition loses their vision if not born totally blind.



Sorry if this has turned into a rant, I just want to find others who are visually impaired like me.
   
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Re: Anyone blind/visually impaired? - September 30th 2013, 07:06 PM

Hello there, I would never say I know how you feel unless I really do. I can't relate to the body image or food issues so much, but I'm completely with you on the vision stuff. Mine is A LOT more complicated than having one thing, but I am slowly losing my sight and they can't tell me if it will ever be gone. Basically, they can't tell me anything or do anything and it's the most frustrating thing ever. This did not turn into a rant, don't worry. Even if it had, I've done plenty of rants on this here myself.

I found an old response I gave to someone in a similar situation, it may help you too:

As someone who may lose their sight someday I sympathize with you. It may sound strange, but you will go through a grieving process and your feelings about your condition will change over time. Sometimes you'll be really angry and sick of answering the same questions and giving the same explanations a million times over, and sometimes you'll just want to cry. Whatever your reaction is, it is perfectly acceptable. Be grateful when possible for the vision you do have while you have it. Keep in mind that this does not define you as a person you are no better or worse without your sight. I say that because that's what I struggled with. If you qualify for accommodations don't fight them. If you or your eye doctor feel you need to begin learning to live as a blind person (learning Braille, using a cane, etc.) then follow their recommendations and know that you are not alone in this. Try fo find support around you, especially someone going through the same or similar things. I found this difficult too. My family and friends were as supportive as they could be, but they just didn't understand and sometimes they said things that really upset me. Keep in mind that your close family members might be grieving for your loss too. I know that I get so wrapped up in my own reaction to my situation sometimes that I forget that it isn't easy for my parents either, they don't want to think about my possible blindness anymore than I want to have it become a reality. Be patient with them and with yourself. Feel free to ask me anything and I'll do my best to help.


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Re: Anyone blind/visually impaired? - September 30th 2013, 07:59 PM

Hey! This is Connor. We spoke and you already know my situation. You're not alone!


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  (#4 (permalink)) Old
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Re: Anyone blind/visually impaired? - September 30th 2013, 08:39 PM

Quote:
Originally Posted by Kate* View Post
Hello there, I would never say I know how you feel unless I really do. I can't relate to the body image or food issues so much, but I'm completely with you on the vision stuff. Mine is A LOT more complicated than having one thing, but I am slowly losing my sight and they can't tell me if it will ever be gone. Basically, they can't tell me anything or do anything and it's the most frustrating thing ever. This did not turn into a rant, don't worry. Even if it had, I've done plenty of rants on this here myself.

I found an old response I gave to someone in a similar situation, it may help you too:

As someone who may lose their sight someday I sympathize with you. It may sound strange, but you will go through a grieving process and your feelings about your condition will change over time. Sometimes you'll be really angry and sick of answering the same questions and giving the same explanations a million times over, and sometimes you'll just want to cry. Whatever your reaction is, it is perfectly acceptable. Be grateful when possible for the vision you do have while you have it. Keep in mind that this does not define you as a person you are no better or worse without your sight. I say that because that's what I struggled with. If you qualify for accommodations don't fight them. If you or your eye doctor feel you need to begin learning to live as a blind person (learning Braille, using a cane, etc.) then follow their recommendations and know that you are not alone in this. Try fo find support around you, especially someone going through the same or similar things. I found this difficult too. My family and friends were as supportive as they could be, but they just didn't understand and sometimes they said things that really upset me. Keep in mind that your close family members might be grieving for your loss too. I know that I get so wrapped up in my own reaction to my situation sometimes that I forget that it isn't easy for my parents either, they don't want to think about my possible blindness anymore than I want to have it become a reality. Be patient with them and with yourself. Feel free to ask me anything and I'll do my best to help.
My parent's don't even seem to think it's a big deal, I'm freaking out over here, and they don't even bring it up to me. They just seem to let it go, like there's nothing they can do about it. Is it because they've accepted this from when I was younger?

Have you lost all your vision already? How are you able to cope?

I can't learn braille that well, because I don't have money for a person to teach me what I don't know. I know grade 1, and some of grade 2 from when I was in high school, but I have no idea how to do math in braille, and that's causing me problems with (a school that offers online classes for blind people) in order to get my high school degree, I have to take math, and I'm no longer able to see large print/write what I need to write for the class, and I don't know how to use braille math. All my life I've used large text or a CCTV to do math.
   
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Re: Anyone blind/visually impaired? - September 30th 2013, 11:43 PM

My vision is still pretty stable, I'm losing it so slowly that I don't even notice much difference until they actually test me. I do need new glasses right now though, which they don't seem to understand.

I'm sorry you feel like your parents aren't doing much to help you with this. I have no way of knowing why they are reacting the way they are. It could be that there's nothing they can do so they don't want to dwell on it, or that since they aren't going through it themselves, they have no idea what you're going through and don't realize what you need from them.

In terms of actually learning braille, I'm afraid I can't be much help because I'm not at that point yet. If the school is for blind people, they may have a suggestion as to what to do next or some resources that can help you with braille math.


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Re: Anyone blind/visually impaired? - October 1st 2013, 01:51 AM

Im legally blind with detached retinas...does that count? Also i have depression.


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Re: Anyone blind/visually impaired? - October 1st 2013, 02:24 AM

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My vision is still pretty stable, I'm losing it so slowly that I don't even notice much difference until they actually test me. I do need new glasses right now though, which they don't seem to understand.

I'm sorry you feel like your parents aren't doing much to help you with this. I have no way of knowing why they are reacting the way they are. It could be that there's nothing they can do so they don't want to dwell on it, or that since they aren't going through it themselves, they have no idea what you're going through and don't realize what you need from them.

In terms of actually learning braille, I'm afraid I can't be much help because I'm not at that point yet. If the school is for blind people, they may have a suggestion as to what to do next or some resources that can help you with braille math.
The school doesn't do teaching of braille math and, I wouldn't be able to read the books because I'm not good at reading Braille.

I'm also losing it slowly, but this past Christmas I noticed it more. the right side of my right eye is all blank, but the center and left side are able to see out of.

My left eye is not able to see at all because the nerves are dead due to them having to give me oxygen.
   
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Re: Anyone blind/visually impaired? - October 1st 2013, 02:34 AM

Hey there!

I'm not blind or visually impaired, but someone in my family is a cancer survivor and due to specific treatments, she is now partially blind. I don't know if I can really offer advice because I'm not in your situation, however, you are not alone and I hope you can get the help that you deserve


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Re: Anyone blind/visually impaired? - October 1st 2013, 03:06 AM

Hi,

I believe I know what school you are talking about that does online classes for the blind.
you can go to The Braille Authority of North America's website to find lists of the Braille symbols and what they stand for. Also, do you have a refreshable Braille Display? Some (such as the BrailleNote, which I use) have Braille Study Mode and an optional Nemeth Code tutorial you can download (if you get any equipment or services through a commission for the Blind or other organization for the blind (usually ran by your state) you should be able to get the optional nemeth tutorial, offered by HumanWare (or the manufacturer of any device you use that has one). I could also help you if you are struggling with the nemeth math or grade 2, if you tell me the dot combinations, I can tell you what they stand for (as long as you are specific about them being used for nemeth or grade 2 because some symbols are not the same thing in certain situations).
Also, I can relate to the body image issues. I have always been blind but I do have issues feeling okay about how I look to others and other things about my appearance. Take each day at a time and try not to skip meals a whole lot because the consequences of doing this long-term are not great, I know from some experience, and will only add to your depression. Physical health affects mental health, if you are physically healthy, you will be even more able to get through your depression and learn how to cope better.
You are definitely not weird at all. Even people who have been blind their entire life struggle with image issues and the challenges of not having sight. I cannot even begin to understand what it is like to lose vision that I already had though, that is something I cannot relate to. But I can tell you that many things are possible and that the more support you have around you the better. Whether that support involves going to a long-term program for newly blind adults, having people come to you to teach you life skills or whatever else you may need, having the support is a lot better than having no support. If you would like links to resources that can help (a variety of them) you can send me a PM and I will be glad to give you those links.
I understand what you mean about parents not seeming to care. The thing is, they are probably just as terrifyed as you are deep down inside because it is scary for any parent to see their child going through the loss of vision. Not many people can relate to having someone they know lose vision or to go through the process themselves so the idea of this when it does occur is unimaginable and confusing to everyone involved. If it would help, there is family counseling you can get with a counselor that is trained in helping people and their family come to terms with vision loss. You can also get individual counseling for your eating issues, depression and PTSD (though, I am assuming since it sounds like you are diagnosed that you are receiving this help?)
Hopefully my response is helpful and you can send me a message if you ever need anything.
I am very glad to help and though I cannot relate completely, I can in some ways and will help as best as I can with connecting you to any resources or supports I know of.
Take care.


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Re: Anyone blind/visually impaired? - October 1st 2013, 01:25 PM

I'm not able to get the braille note, because I'm not in a job or in college. I don't have the money to buy a braille display either, all my SSI my mom uses for "bills" which include our cell phone and her renacenter bill.

How would I tell you the dots in a braille math book if I am not sure what the dots are?

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Re: Anyone blind/visually impaired? - October 1st 2013, 03:48 PM

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I'm not able to get the braille note, because I'm not in a job or in college. I don't have the money to buy a braille display either, all my SSI my mom uses for "bills" which include our cell phone and her renacenter bill.

How would I tell you the dots in a braille math book if I am not sure what the dots are?
This will be extremely hard if you do not have a Braille display of any sort.
How are you completing the class? Is it all using JAWS or NVDA?
Have you contacted an agency for the blind in your state so that you can get help? If so, did they say that you cannot get help because you are currently not in school or employed. I've heard of them working with people (providing them with tech training, notetakers etc. even if the person is not employed or in school). They would do this for a future goal of the person becoming employed or going to school.


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Re: Anyone blind/visually impaired? - October 1st 2013, 06:44 PM

I'm completing my English Skills and Personality class online using Jaws. Vocal Rehabilitation is the people in my state who help people with stuff like the braile note and stuff. They said they couldn't get me anything that "high tech" because I'm not in school or have a job. I'm trying to get my high school dagree through the online school.

to tell you a bit about how cheep the vocial rehab people are, they wouldn't even give me a braille writer, instead they gave me a slate and stylest to do braille on. They said I could do everything with a Slate and Stylest that I could do with a braille writer.... WTF! You can't write long periods of time with that thing!!! Plus, you can't do math at all on that thing.
   
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Re: Anyone blind/visually impaired? - October 2nd 2013, 09:01 PM

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I'm completing my English Skills and Personality class online using Jaws. Vocal Rehabilitation is the people in my state who help people with stuff like the braile note and stuff. They said they couldn't get me anything that "high tech" because I'm not in school or have a job. I'm trying to get my high school dagree through the online school.

to tell you a bit about how cheep the vocial rehab people are, they wouldn't even give me a braille writer, instead they gave me a slate and stylest to do braille on. They said I could do everything with a Slate and Stylest that I could do with a braille writer.... WTF! You can't write long periods of time with that thing!!! Plus, you can't do math at all on that thing.

That is really dreadful they only gave you a slate and stylus. You can do math with them but sense you do not know nemeth well and sense when you use them you write from right to left backwards so that the writing shows up left to right when you flip over the page, that is rather impossible for you. I could go buy a slate and stylus for under $5 if I really wanted another one; I usually only hear of people using them for small notes.
You should try contacting a national organization for the blind and explaining your situation to them. The best would probably be NFB (National Federation for the Blind). They have resources that could possibly help you. Be sure to explain you have talked to your state agency already though.
I have heard of some states not being so great and hopefully when you contact NFB they will be of more help to you. They have tech centers, O&M instructors and other staff that can help you.
Hope this helps and that you are able to complete this course.


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Re: Anyone blind/visually impaired? - October 3rd 2013, 05:03 PM

Thank you, Kora. I'll contact them soon.
   
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Re: Anyone blind/visually impaired? - October 3rd 2013, 05:51 PM

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Thank you, Kora. I'll contact them soon.

Hi,

Here is a link to a list of agencies for the blind by state:
State Agencies.
Hopefully you will find one you can contact in your state.


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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