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Blind and Visually Impaired Community

Full History - 2015 - 09 - 21 - ID#3lt8rd
12
Girlfriend likely going completely blind; unsure what to expect (self.Blind)
submitted 7y ago by Opticthroway
I've been dating this girl for nearly a year and when we started dating she had already told me about problems with her vision. She could still do pretty much everything she needed to be independent, but for a while her vision has been getting gradually worse to the point that she can no longer drive as of about a week ago.

Doctors don't have a diagnosis for her. Whatever is causing her vision loss, it likely won't recover because of damage to the optic nerve. Doctors have put her condition under the umbrella of optic neuritis. Could be MS so she has MRIs every 6 weeks. So far it looks like an auto immune disease that has only affected the optic nerve.

I love her and would build a life with her but the future is looking kind of scary. I work a lot but don't make a lot of money. We have been planning on moving in together but now that might be put on hold. She lives with her parents and is trying to finish school but her field was something absolutely requiring the use of your eyes. This means she'll have to start over and she has no idea what else might interest her career wise.

Looking at the worst case scenario of total and permanent vision loss, and assuming we try and make a life together, what lies ahead? As much foresight as I try to exercise in order to be prepared to provide all the help she'll need, I'm sure there will be so much more that I can't anticipate. Lay it out for me, how can I come to a sustainable arrangement assuming she goes completely blind?
Lion_the_Bunny 5 points
Hello! I'm a chick with a disease called optic nerve atrophy. Self explanatory - atrophy of the optic nerve. This must be a really difficult thing for your girlfriend...losing independence can be incredibly depressing. Some advice:
Get in contact with the vocational rehabilitation department in your city. They offer resources for school, jobs, low vision technology, and driving programs for the visually impaired (I just got my license at the age of 28). Also, don't underestimate the value of a support group - it's a weird, alienating feeling when you get a diagnosis like that. If you or your girlfriend have any questions or if she just wants to talk, feel free to PM me.
geoffisblind 3 points
> Get in contact with the vocational rehabilitation department in your city.

Definitely this, Rehab Services for the Blind and private organizations are the best resources available to the blind and visually impaired community. They help with everything from training to technology and can even help with going back to school for a different career. I can't emphasize enough how important this is. This sub has a list of organizations that is still being built in the Wiki, check it out, it may be useful.
Opticthroway [OP] 1 points
Thanks. I like the idea of a support group. Since her vision reached a point a couple weeks ago of no longer being able to drive I've been experiencing some serious disassociation. When I take a step back I see my life and sometimes don't even recognize who I am.

It sounds like the visually impaired have lots of resources to assist them. I'll be looking up these group and familiarizing myself with what is available.

Also appreciate the offer for further assistance, we may need it. Thanks.
homeschooled 5 points
Hi OP! I don't know how much attention this post will receive so I thought I'd chime in. I'm sighted, like you, with a boyfriend (together 2 years) who has advanced Retinitis Pigmentosa. He is mostly blind, doesn't drive, etc.

He was diagnosed at age 5 but still went to undergrad and grad school for Psychology and Consumer Research. He got a job at age 24 and worked until late last year, where he was laid off. I think he was "laid off" as in....he wasn't super efficient but they used another excuse to let him go. He realized at that point that his vision was getting worse and it was the wrong field for him. Sucks because he has $30k in student loan debt, but I'm glad he's realizing it now until later.

We live together and right now he's living on $900ish a month in disability. It covers his half of rent/utilities (we found a place that's cheap but still niec). He went back to school for massage therapy, a field we both researched and decided would be great for him because it doesn't require his sight at all. He will be finished next summer and is really liking it. It's a field that has a lot of opportunities.....he can work in a hospital setting, spa, work from home, sports teams, etc.

I know it seems like the end of the world but it's NOT. We are still really happy. Yes, him being blind changes things and adds a bit more responsibility for me (I'm his taxi!) but I love him and of course it's worth it.

It's not for everyone. If you stay, you need to realize that you will always have to drive. You can't resent her for that. You'll have to help sometimes. If you have kids, you'll need to completely take over some of the responsibility you'd normally share with a spouse. If she's a good partner, then she will balance that out by completely taking over some responsibilities that she is able to do still.

PM me if you ever need advice. It's not always perfect, but no relationship is. Don't stay with her because you want to take care of her. Only stay if you love her.
Opticthroway [OP] 1 points
Thank you, I appreciate you sharing your experience with me. She has always been someone to really go out of her way to do things for me, even basic day to day stuff, to make my life easier.

I've been the only one for our entire relationship to ever drive when we go out together. I don't mind and in fact I'm happy to take that bit of stress away from her.

I've been bummed lately because of all the uncertainty. I feel overwhelmed by all the things I'll need to learn/be ready for.

Thanks for the offer of advice. You've been very helpful and I may need more help.
homeschooled 1 points
You're welcome!

> I've been the only one for our entire relationship to ever drive when we go out together.

And just to clarify, though, I don't mean when you only go out. I mean you will probably have to assist her in driving her to/from work, school, or any other errands. Hanging out with her friends, that kind of thing. I drive my boyfriend to and from school every day.
Opticthroway [OP] 2 points
I understand. I was just trying to say that even when she could drive, and would offer to, I was insistent that I be the one to drive. Granted that's probably been looking out for both of our well being. The last couple weeks I've been driving her/picking her up from work and taking her to doctors appointments. I know that will probably have to continue and even expand into more of a commitment as we go forward.
johnnytai 1 points
Be supportive and not patronizing. Be encouraging and not pushy. Be patient but do not have low expectation. If she wants to, there are tons of careers out there for her, and if she wishes to, she will be more rather than less than when she has vision. I've know totally blind parents, they work, cook, bring up multiple kids, so it's not the end- just a new beginning.
Asajev 1 points
Greetings OP,
I am a graduate of World Services for the Blind an organization that focuses in assisting individuals restore their life. Not only am I a graduate of the centers program but I am also a certified Instructor of Adaptive Technology for the Blind. I myself was born with a large array of visual conditions that have slowly crippled my vision. As is in the case of your girlfriend I was at school studying a career that absolutely requires good eyesight but do to my condition slowly progressing I have had to change my plans. If you wish I can put you in contact with World Services for the Blind in Litle Rock, AR, USA. In addition I could suggest some technology that might assist your girlfriend continue being able to work or go to school. The fact of the matter is that with today's technology eyesight is a minor issue if you know how to bypass it. Feel free to PM me if you need anything.

As to what you can expect that depends on the attitude of your girlfriend. As a professional in the world of the low vision and blind I can tell you that a lot of success has to be with the attitude of the individual being affected and the attitude of those around the affected individual. The first thing and it is the hardest is to accept the condition. I speak out of personal experience when I say that it is difficult to accept such a change. The journey into the darkness of blindness is sometimes not an easy one. What helped me and those around me was the level of trust we had in each other. I will say that I went through some low points and I am still not a total blind individual but I used to be able to manipulate very small items like jewelry crafting and not being able to do the things I enjoyed hit me hard. My attitude changed when I dear friend of mine who was going through a similar condition challenged me to do the impossible. I accepted the truth is she was going through a worse situation but she pushed me back into the side of things were I acquired an outgoing outlook on things. This had the side effect of me now being able to help her come with me.

If your girlfriend goes total blind then she will not be able to do some things at this point in her life but technology development will allow her to drive, and do normal things in a few years. It all boils down to do you have a good attitude and do you dare do an impossible task and that is be a person that just happens to have the symptems of an eye condition. To not let your condition define you but you define your condition.
jage9 1 points
What was the career she was interested in? Sometimes people think that you can't do a specific career but in reality it can be done with adaptations. Or there may be a related career to her major that could still work. As to the comment about being her taxi, there's certainly some truth in that, though if you're in a big enough city, public transit, Uber, or rideshare are also options. If you let us know what city you're in, we may be able to suggest specific resources. There may be a n$1 chapter near by, or other groups. And of course you can ask other questions here. She'll likely need some training or guidance on how to do some things without sight, such as cooking or using a computer, but it's all possible. Hope this helps a bit.
Opticthroway [OP] 1 points
It does help and I appreciate it. We're in the Dallas/fort worth area. Her field of study was an American sign language program to work as an interpreter for the deaf.

Needing to drive everywhere was the biggest thing I was anticipating. The idea of uber occurred to me as well so I'm glad to hear that is worth considering. Thank you.
Unuhi 1 points
Don't forget to practice ASL then! It's valuable: there are Deafblind people out there too... Some sign, some soeak orally. Some use tactile sign. I toowould love to learn some sign language - even if it won't have much use for being able to see what others say.

Check out NFB Dallas chapter, and Dallas Lighthouse.
Both have activities, and you can just go for a NFB meet to get to know other VI in your area. Everybody is different - yet it's so nice to then meet others to learn stuff amd when you don't have to feel anything less just because of eyes.

Once she's declared legally blind ("legally" is the magic word that opens doors), she can get in touch with DARS - and she might want to do some training here in Austin. Criss Cole center for adult blind rehab is here - and there is so much more for the VI to do around here. Tsbvi.edu has also a lot of resources online and they are very helpful. And NFB Texas will arrange a meetup here in the middle of November, a 3-day weekend. Come meet others - having some usable sight left isn't a problem.
Asajev 2 points
One other note that no one mentioned as it applies to public education in the state of Texas. You get a tuition waiver. This means as long as you are legally blind or deaf you do not need to pay school tuition in a Texas public higher education school.
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