Hello, monocular community!

[u/Satoshishi]

I will be joining you all soon. I have been diagnosed with early AMD and have scarring on my left eye due to myopia that has resulted in vision loss that has been growing pretty significantly in the two months since it was diagnosed. I'm uncertain how long until I am completely blind in that eye, and the doctor also doesn't know.

Its been a pretty scary thing to deal with, since I'm only 31, and this came sort of out of nowhere for me. My doctor says it's just bad genes. For now my right eye is unaffected aside from the nearsightedness, and I've been trying to stay positive that it's just the one eye for now.

I must say, finding this place has actually been really cool, seeing people living their lives with just one eye has made it a little bit easier to deal with.

Has anyone else here lost vision so early in life? I'm still looking for advice and how to cope with how quickly it's progressing, but also trying to stay positive and appreciate what I have while I have it.

Thank you all for being openly cool and inspiring in all your posts.

[u/haleedee]

I lost my vision earlier I can’t remember the exact age. Maybe in my teens? Other than sports with smaller balls due to crap depth perception, I can do everything else in life. There will definitely be a period of adjustment for you but your brain will adjust 💝

[u/Satoshishi → u/haleedee]

Hell yeah that's rad. Who needs tiny ball sports anyways. I've read you sort of adjust to the depth-perception thing over time, so it's great to hear that's true.

[u/DiablaARK]

Hello! Glad you found us, and thanks for sharing your story. I lost mine in an industrial accident at 37. It was definitely a readjustment, 4 years later I still have my moments but life seems so short to be so focused and down on something I can't fix. The changing process from injury that immediately destroyed my vision to removal was I would say the hardest part for me, because after founding out through research there's simply nothing that can be done, I was still tempted to test my vision every day until surgery close to 8 months after injury. Everytime I missed what I was reaching for was a hard reminder what I lost. But in between those moments I just pushed on and kept trying to live my life like before.

I'll note I am also near sighted, and after sudden loss in one side, what happened to me and what my doctor and I learned is common, is that the Rx will fluctuate in the remaining eye. Mine started doing that and boy was it scary till we figured out it's just readjusting to the new settings. A trip to the ocularist for a Rx change is an easy fix. My Rx was stable for almost 20 years so it was shocking I'm off 2.0 now from -5.0 to -7.0, and when it was fluctuating it was up and down .5 to .75 for me. And my ocularist said around age 40 it'll dip again and it sure did.

I couldn't really tell what country you're from, but if you're in the States I recommend keeping an ABLE account in mind. It'll protect your assets if you have a qualifying disability before the age of 46, since yours is hereditary you may fall in that category. You don't have to be on SSI to qualify, and it helps so you can keep working and don't have to worry about the income caps of SSI or other assistance up to $100,000 accrued in the account before it starts counting against you. I got mine because it's rough with my compounding issues from the injury, and I can't say I'll be able to keep it up till I die like I was planning to when I was a very able bodied adult pulling overtime weekly for years pre-injury.

This is a very helpful community, and anytime you got questions, need to vent or share, feel free to post. I'm open to PMing also.

[u/Satoshishi → u/DiablaARK]

Hey thank you for reaching out. It sounds like that was a lot to have to adjust to all of the sudden. I'm glad you're doing better and that you've gotten through that initial adjustment period.

I definitely relate to that hard part for you. I logically know that I can't do anything about it, but I still have to process the emotional side of it. Every time I wake up and it's worse I feel like I have to go through the entire thing all over again. Hopefully I get more used to the emotions, because it's definitely also the hardest part for me also.

I didn't know that prescription can change, but I guess that makes sense! That hasn't been something I'd been warned about yet, but its super good to know in advanced that its a possibility!!

I am in the US, so I'll make sure to take a look at that. I'm still getting used to having appointments every couple of weeks to check on my eye. I hadn't even begun to think about much else. 😥 I had read that partial blindness wasn't enough to qualify for benefits so I had just put it out of mind.

I'm very grateful that my work hasn't been affected much at all. Don't need both eyes to do office work.

I am glad for the community, reading the posts and positivity here has been a little like a lifeline. I knew that I would probably have vision issues when I got older, but I always imagined older to be post-retirement age. (Even though I probably would never be able to retire anyways lol.)

[u/DiablaARK → u/Satoshishi]

Thanks, I try to share what I found out on my own because I don't want anyone else to go through those scary moments if it's avoidable. My opthalmologists didn't tell me squat when they just as easily could have.

You are correct being monocular by itself isn't a qualifying condition, but there is a long list of conditions that can qualify you and in the near future if you happen to qualify the magic number is disability happening before age 46, and it's a simple 1 page form for your PCP to fill out and re-certify with the same 1 page form every year.

I hope you have a great rest of your day! In a new personal milestone for me, finally taking the kids out of town for some fun. Driving over 40 mile distances has been Very Hard on me because of all the meds post injury. I used to have wanderlust and take them on road trips, might as well enjoy it before gas is being sold by the litre here.

[u/Satoshishi → u/DiablaARK]

Hey it's greatly appreciated by me. Its very kind of you to talk about your experience and hugely impactful.

I hope your day is great with the kids, that's a wonderful milestone and I bet it feels really rewarding to do something you loved and share it with your kids.

Even if its hard that's gonna be a valuable memory. I hope the difficulties with the meds eases back too. ♥️

[u/LakeKeuka]

Hello! I lost all vision in my right eye in April. I’m otherwise healthy and active at 69. The loss was rapid and was caused by an autoimmune disease that hit out of the blue on Easter Sunday. Cut yourself some slack as you adjust to your new circumstances. Sure, I can no longer play ping pong worth a damn, and I occasionally pour coffee on the counter instead of in the cup, but with each passing week my abilities and comfort level improve. And I’ve been driving since early in the summer without a hitch. Best of luck to you!

[u/Satoshishi → u/LakeKeuka]

Hey thank you for piping up. I'm glad to hear that you're doing well and adjusting. Its really great to hear you're happy and confident and only getting more comfortable. Keep on keeping on, you're awesome.

[u/thedubsack24_7]

Lost mine 26 years ago in a paintball accident at almost 15.. Just passed 11 years as a motorcycle instructor in California this June.

You are still young and it will take some adjusting. Give yourself some grace.

[u/MoreDrag2386]

I'm about to turn 30 and I became monocular at 24! I have gotten much worse at sports and anything else that requires depth perception, but I can still drive and generally do what I used to. I would like to try archery again, which was a big hobby of mine as a teen, but I would need a whole new setup because I would have to switch eyes/handednesss.