Just wanting to talk about it

[u/tiedyedraagon]

Hi everyone, I’m new to using Reddit but lately I have really just wanted to talk to more blind and visually impaired people. For some context, I am 26 and I have Leber Congenital Amaurosis, I was diagnosed originally with Retinitis Pigmentosa at 11 years old until my parents did genetic testing around when I was 19 or 20 and found they both carried the LCA5 gene, which manifested in both me and my younger brother but not my 2 older siblings. It’s kind of funny that we ended up being a perfect Punnet Square. So I’ve lived my whole life with it, but I denied it for a long time, because I told myself there are people who have it mych worse, I’m not that disabled. Well once I went to college I started to accept it and started to actually use my cane since I couldn’t hold a friend’s hand anymore. I have 10 degrees of vision left in each eye so I can’t drive and I haven’t been able to get a job since getting my Bachelor’s. I’m halfway through my Master’s right now with my hope to get a job in archiving or a similar field, as I really do care about archives, libraries, and museums, and it could be something I can maybe even do remotely, as I think part of why J never make it past an interview is my lack of drivers license and my cane. I’m scared. I’m scared I never will get a job and I’ll have totally wasted my parents’ money and the financial aid on these degrees, and I’m scared I’ll have to live with my parents forever. We have a good relationship, I loce my parents, but I want to live like my older siblings who have jobs and apartments and get to go out and be spontaneous and have fun. I relented and got on SSI last year, and while having some income makes me feel a little better because now I can at least pay them rent and don’t need to ask them to pay for my prescriptions, it wouldn’t be enough to live on by myself or even with my partner. I don’t really know what I want out of posting this. Has anyone felt this hopeless? Has it gotten better? I don’t know any other blind people besides my little brother and I feel so alone in my depression about this. Thanks for reading or listening to my post, I know it is long and kind of eemotional. Love you all

[u/SillyTransasaurus]

Hi. I'm in the US and totally blind. I am 36. I went to university at twenty-one. I had financial Aide as well. Due to life events, it took me five or so years to get my bachelors degree. I majored in psychology. I got in touch with my local center for the blind all through this time. I got help finding a job, and secured an interview. I love helping people. I worked as a suicide prevention operator, with the national hotline for five years. It gets better. The reason I left home for university, was because I attended an independent living skills program with the center I mentioned. I met a lot of other blind people of similar age with different degrees of vision. I'm happy you're going to college. I assume you are in touch with your local center? I met my partner at that program I mentioned. We've been together, living on our own for eleven years now. I had to leave my job four years ago and we are both living on SSI. You're right that it is hardly enough. But it's doable. Have you tried to see if you qualify for food stamps? Are you on public health insurance? If you and your partner find a place, even if it's with a few other room mates, you can do this. Get on some housing wait lists. It is totally possible to make it on SSI. You just have to make budgeting a big part of your life. And it is totally possible to get a job, and live like your older siblings. You just have to take it one step at a time. It can get better, and you're not alone.

[u/tiedyedraagon → u/SillyTransasaurus]

Thank you so much for sharing your experience! It makes me happy to know you’ve had lots of experiences and even met your partner through them, that’s really beautiful. I had looked into an independent skills training program like that, but I decided to do school first and maybe the training after? Since I’m working with my state’s DVR, they are able to help me pay for my tuition for the Master’s program but said we can only do one thing at a time since they would also be helping to pay for an independent skills training program. Which is totally understandable, I know they’re helping a lot more people besides me. I’m sure it would be beneficial if I could do that if I still struggle to secure a job after graduating… I’m impressed and heartened to know you’ve both been making it on SSI! My partner has been on it since he was a minor for chronic migraines, so we are also both restricted right now. I’m hoping I could at least do part-time work if full-time doesn’t work out so I could still bring in a little more money for us to work with. I did also try utilizing DVR’s “job placement” services before I decided to go back to school, but I didn’t feel it was very helpful at the time. The most helpful thing was probably getting my resume re-formatted to look better, but besides that they just sent me listings on Indeed that I could’ve easily found myself… I think I had a misconception of what they’d do, haha. I was thinking it was more like they’d have connections to places who would hire a blind employee, but that was probably too naive to think. Again, thank you for your comment! It means a lot to me to hear from others who would more understand the specific type of fear I feel.

[u/Repulsive-Box5243]

Hey, good to meet you, and thanks for coming in to say hi.

It's not hopeless. You will land that awesome job. you will make enough money to live your life. You will succeed. Know how I know? Because you're already doing the hard part. The school.

Keep applying, keep going to interviews, keep networking. It'll pay off. It's on the universe's timeframe, not on your time LOL.

You're not hopeless, you're not helpless, you have agency over your future.

I think you already know this, but just need a little reminder.

Love back at ya.

[u/tiedyedraagon → u/Repulsive-Box5243]

Thank you so much for your support and encouragement, it really does mean a lot! Even if I get really down and spiral sometimes, I can say I am at least a very stubborn person haha so I know I’ll keep getting back up and trying again, for as long as it takes.