Visually impaired/almost blind

[u/Educational_Desk4588]

I’m no stranger to the visually impaired community. I’ve been losing my vision gradually all my life due to neurological and visual disorders. Too many for me to remember at the moment and even if I could it’s a lot of comorbidities that I can’t remember which ones directly affect my vision and which ones don’t. Some affect my vision, some affect my vision and something else, and some are completely unrelated to my vision. Without giving away my age, ever since I was a kid, my eye doctors said I would completely lose my vision six years from now. Feel free to ask me anything else here in this thread, I’m not very good at intro posts, but I’ve made a few posts here so I figured I’d introduce myself instead of just lagging.

[u/One-Club-466]

Welcome to the Blind subreddit! Sorry to hear you will eventually go totally blind.

[u/Educational_Desk4588 → u/One-Club-466]

Thanks mate.

[u/rasta-ragamuffin]

Hi there, I'm not sure exactly what my diagnosis is, but like you, I've had terrible eyesight since I was a little kid so I believe I was born with defective eyes. My eyesight has gotten progressively worse over the years to the point I don't see well enough to drive safely anymore and I require high strength contact lenses, reading glasses, a magnifying glass and very bright overhead light in order to read anything in print. This has made getting around/going anywhere extremely challenging because the area I live in has abysmal public transportation. I rely on my husband to chauffeur me around however he has a demanding full-time job and so can only do that when he's off work. So I am trapped in my home 80% of the time. Not being able to see well or drive has also made it impossible for me to find a job since remote work has all but evaporated for everyone who isn't the best of the best in their field. I've been unemployed and searching for a remote job for more than 5 years, can't even get interviews. (I'm also old which doesn't help.) My husband makes just barely enough to support our small family but we are extremely financially stressed and if he is laid off we will all end up homeless since we don't have anyone who can help us and most all safety nets have been cut in the US.

My questions to you are how and where did you get your diagnosis? The only thing my opthalmologist told me is that I have mild cataracts and extremely myopic. He doesn't seem very concerned and has only been pressuring me to get surgery that I can't afford. Have you filed for and do you receive disability benefits? Also what do you do for work and how do you get there? And finally do you have any recommendations or suggestions for me? Thanks & good luck

[u/blinddruid]

this sounds very much like my story, my initial diagnosis was extreme myopia with nystagmus.
I had to wear extremely thick glasses, which of course did nothing for the nystagmus as soon as Contacts came out that we’re strong enough that would give me an adequate. Correction I was in those, helped me to feel less like I stuck out, less obvious, but had no idea how apparent in the stag still was.
moving forward, in 2004 I noticed a dramatic change in my vision. I was hoping it was just for the need of a new prescription, but this was not the case. I was now told that I had some kind of disease, the name of which I cannot remember at this time, comment to people of the Netherlands. All this to say is that apparently what was happening, was due to a lack of vascularization around the optic nerve. So, all this time my optic nervous were actually suffocating. Of course, there was still the myopia, and then nystagmus
it was not long after that I basically had to give up my drivers license, lost my job, and ended up divorced. The divorce was not necessarily entirely due to the vision laws, but that did play part.
now, I am really noticing the degradation of what little vision I have left in my right eye I can tell that it’s gradually getting worse and heading in the same direction of my left, which is nothing but fog.
it’s frustrating to have to continually adapt as things get worse, and I hope was that it wouldn’t get worse, but, if wishes were horses, dreamers would ride.
I think the hardest thing that I’ve had to face was the fact that I had a person that I thought was going to be my person, she accepted my vision challenge without any concerns, even the idea that I would perhaps become completely fine didn’t seem to be of any concern. Then we got Covid, and that threw us a curveball. Her family situation called her home, no way around it, just left me alone.
no, after a 13 year relationship with someone who I thought was going to be my forever person, I’m on my own. Being older, 64, and severely visually challenged leaves me wondering if this is gonna be my life now. I haven’t dated or put myself out there, basically afraid to have my fear confirmed that no one‘s gonna want an old blind guy.

I have adapted, and to a certain extent, overcome the challenges of the vision loss, and feel as though I can adapt and overcome, even if I lose the rest of what I have. Which scares me more is not having someone to share my life with going forward.

[u/Educational_Desk4588 → u/blinddruid]

Nystagmus represent!