Blind and Visually Impaired Community
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What are some resources you've found helpful for coping with progressive vision loss? (self.Blind)
submitted by eyelightss
I'm growing increasingly more depressed about this. It's one thing to be in a dark place literally but, emotionally is a lot harder. It's increasingly harder to pull myself out each time I get this depressed. I've been to several therapists but I don't feel better talking to them because they don't get it. The only people who understand are others who are dealing with it. Doctors sometimes make me feel better but they're often at a loss for words too except for the vague "the future is bright" saying that everyone's heard for the last 30+ years. I envy those who have grown to accept their diagnosis, I'm uncertain if I ever will.
OldManOnFire 9 points 1y ago
I've tried but the words just aren't flowing today. I've spent half an hour writing, deleting, and rewriting a response to you but I'm just not happy with the results. So I'm posting a link to a response I wrote a week or two ago, before writer's block ambushed me.
$1
Sorry to give you recycled material but it's better than anything I can crank out today. It's a different question but the same emotion. I hope you look through the r/Blind posts because there's a lot of wisdom here.
$1
Sorry to give you recycled material but it's better than anything I can crank out today. It's a different question but the same emotion. I hope you look through the r/Blind posts because there's a lot of wisdom here.
eyelightss [OP] 4 points 1y ago
Thanks for your reply and words, even if they were written previously. The bit where you said "The grieving is hard, but it doesn't last forever," it unfortunately lasts for however long it takes for you to accept the condition. It has taken me several years and counting. The constant changes are a constant reminder and the constant reminders chase and haunt my desire to forget. The times i've been happiest since my diagnosis are the times I didn't think about it. The goal is to be just as happy while thinking about it and be optimistic-- I envy those who are there.
OldManOnFire 3 points 1y ago
If I may offer an observation that helped me, you can't embrace the new while you're still holding on to the old.
The old me was a workaholic, a high achieving goal setter, well known and respected in my industry. That was my identity. Mister Employee of the Month. Then RP took it all away. No more driver's license, no more job, nothing to do with all this time on my hands. I realized how much of my life I'd given to my career and what a source of pride it had been for me. And now it was gone.
Then my son in Tennessee called me up and asked "Hey Dad, is there anything you want to do before you lose the rest of your sight?" That got me thinking. There were lots of things I wanted to do, but I hadn't because I was too busy working. Well, I wasn't too busy now, so let's chip in and buy a boat!
You've already read about my blind bucket list so I won't go over it again, but there's something I want to point out about it because I think it might help you come to terms with your own RP. All the things I've crammed into the last six months, the trips and hikes and batting cages and Nerf Gun battles, they were all things I could have done before my diagnosis, but didn't. I was too busy working because excelling at work was my identity. It wasn't healthy but I was good at it and the praise was addicting so I kept doing it.
Blindness, ironically, opened my eyes. Yeah, I'm still gobsmacked every time I think about that metaphor. The workaholic identity I had was over. I could have continued to work, I guess. My reputation in the industry could have landed me a job, but I knew I would be pitied, not respected. That wasn't what I wanted, but until my son called me and asked if there were any last requests before total blindness set in I didn't know what I wanted. I was still hanging on to the old identity but without the old abilities to make it work.
I threw myself into the blind bucket list the same way I would have thrown myself into a new job before, but with one healthy difference - the blind bucket list didn't become my identity like a new job would have. I'm not that guy anymore. I'm me now. I like me. I am just as loved in the passenger seat as I was in the driver's seat, I'm just as important as a wannabe Reddit philosopher as I was when I kept an industry running, I'm just as worthy walking with a cane as I was walking without it. My job doesn't define me anymore, I define me. And it's liberating.
Maybe you're thinking "Well, it's easy for him because he came from an unhealthy place to begin with." If that's what you're thinking you're not wrong. A big part of my blind bucket list is to stop and smell the roses I was always too important to notice. Like I mentioned earlier I *could* have done all this before I got the diagnosis, but I didn't. Maybe I couldn't. I had become so trapped by my own expectations of myself that taking time off to enjoy life made me feel guilty for not maximizing my time. Stepping away from that has been good for me, but it took an event as big as going blind to make it happen.
You are discovering things about life, about yourself, about your loved ones, and about society that you wouldn't have learned if you didn't have RP. Embrace that! Happiness is before you, not just behind you, but you have to step into your new life to embrace it. Find a new purpose to replace your old one, because without purpose we are lost.
Blindness doesn't have to define you, just like my job didn't have to define me. Find the person you are when all the labels come off. Make that your starting point, then decide what life you want to live. I know it's much easier to say than it is to do but I believe in you. You've got this.
And you're not alone.
The old me was a workaholic, a high achieving goal setter, well known and respected in my industry. That was my identity. Mister Employee of the Month. Then RP took it all away. No more driver's license, no more job, nothing to do with all this time on my hands. I realized how much of my life I'd given to my career and what a source of pride it had been for me. And now it was gone.
Then my son in Tennessee called me up and asked "Hey Dad, is there anything you want to do before you lose the rest of your sight?" That got me thinking. There were lots of things I wanted to do, but I hadn't because I was too busy working. Well, I wasn't too busy now, so let's chip in and buy a boat!
You've already read about my blind bucket list so I won't go over it again, but there's something I want to point out about it because I think it might help you come to terms with your own RP. All the things I've crammed into the last six months, the trips and hikes and batting cages and Nerf Gun battles, they were all things I could have done before my diagnosis, but didn't. I was too busy working because excelling at work was my identity. It wasn't healthy but I was good at it and the praise was addicting so I kept doing it.
Blindness, ironically, opened my eyes. Yeah, I'm still gobsmacked every time I think about that metaphor. The workaholic identity I had was over. I could have continued to work, I guess. My reputation in the industry could have landed me a job, but I knew I would be pitied, not respected. That wasn't what I wanted, but until my son called me and asked if there were any last requests before total blindness set in I didn't know what I wanted. I was still hanging on to the old identity but without the old abilities to make it work.
I threw myself into the blind bucket list the same way I would have thrown myself into a new job before, but with one healthy difference - the blind bucket list didn't become my identity like a new job would have. I'm not that guy anymore. I'm me now. I like me. I am just as loved in the passenger seat as I was in the driver's seat, I'm just as important as a wannabe Reddit philosopher as I was when I kept an industry running, I'm just as worthy walking with a cane as I was walking without it. My job doesn't define me anymore, I define me. And it's liberating.
Maybe you're thinking "Well, it's easy for him because he came from an unhealthy place to begin with." If that's what you're thinking you're not wrong. A big part of my blind bucket list is to stop and smell the roses I was always too important to notice. Like I mentioned earlier I *could* have done all this before I got the diagnosis, but I didn't. Maybe I couldn't. I had become so trapped by my own expectations of myself that taking time off to enjoy life made me feel guilty for not maximizing my time. Stepping away from that has been good for me, but it took an event as big as going blind to make it happen.
You are discovering things about life, about yourself, about your loved ones, and about society that you wouldn't have learned if you didn't have RP. Embrace that! Happiness is before you, not just behind you, but you have to step into your new life to embrace it. Find a new purpose to replace your old one, because without purpose we are lost.
Blindness doesn't have to define you, just like my job didn't have to define me. Find the person you are when all the labels come off. Make that your starting point, then decide what life you want to live. I know it's much easier to say than it is to do but I believe in you. You've got this.
And you're not alone.
hanzas1 2 points 1y ago
Not OP but if I may, this and your comment on the other thread from 11 days ago are so eloquently and beautifully written. I’m so appreciative of your words and your willingness to share your experience.
I’m only 25 and just started to finally settle into the life and career I want to build for myself. You described your old self being heavily defined by your career, I’m starting to see a resemblance in my own life. I feel I’m easily falling into the trap of working my corporate 9-5 and loving it.
This Christmas I got some fairly traumatizing news that I would need immediate surgery to re-attach my retina in one eye, and a fair amount of laser in both eyes. I’m now a few weeks post-op and all seems to be healing as expected. It’s still early stages so the stability of my retinas and my overall eye health is still unpredictable and being closely monitored. I know retinal detachments are nowhere near the same as receiving a prognosis for permanent blindness. I hope no one here sees this as me insensitively trying to equate the two in any way.
Needless to say, the whole experience was a bit of a wake up call and forced me to re-evaluate some pretty critical things in my life. Like A) do I want to devote my entire life’s energy and soul to my work despite how much I enjoy my job. B) all the art, culture, food, places, landmarks, sunrises and sunsets I want to witness, why am I not doing it now? (Other than omicron lol) I guess I just want you to know you certainly made an impact on my decision to start taking my “bucket” list more seriously. I’m going to use this as the perfect excuse to travel to a different city every single month starting next month. Thank you. If there was ever a question of your story’s impact, it’s definitely influenced my life in a positive way.
I’m only 25 and just started to finally settle into the life and career I want to build for myself. You described your old self being heavily defined by your career, I’m starting to see a resemblance in my own life. I feel I’m easily falling into the trap of working my corporate 9-5 and loving it.
This Christmas I got some fairly traumatizing news that I would need immediate surgery to re-attach my retina in one eye, and a fair amount of laser in both eyes. I’m now a few weeks post-op and all seems to be healing as expected. It’s still early stages so the stability of my retinas and my overall eye health is still unpredictable and being closely monitored. I know retinal detachments are nowhere near the same as receiving a prognosis for permanent blindness. I hope no one here sees this as me insensitively trying to equate the two in any way.
Needless to say, the whole experience was a bit of a wake up call and forced me to re-evaluate some pretty critical things in my life. Like A) do I want to devote my entire life’s energy and soul to my work despite how much I enjoy my job. B) all the art, culture, food, places, landmarks, sunrises and sunsets I want to witness, why am I not doing it now? (Other than omicron lol) I guess I just want you to know you certainly made an impact on my decision to start taking my “bucket” list more seriously. I’m going to use this as the perfect excuse to travel to a different city every single month starting next month. Thank you. If there was ever a question of your story’s impact, it’s definitely influenced my life in a positive way.
mavedenyz 3 points 1y ago
I joined a vision loss support group and it has been transformative to say the least. It helps having a group that understands. My group is part of lighthouse guild in NYC. Hope this helps.
eyelightss [OP] 1 points 1y ago
do you need to live in NYC to join?
mavedenyz 1 points 1y ago
Not at all. Just Google search lighthouse guild support group and they will direct you to the website where you can sign up. It is virtual.
They group you based on age. :)
They group you based on age. :)
LeDoTa 3 points 1y ago
Honestly, I thought that I'd never accept it either until I learned that blind people can live a fruitful life as well. I learned how to play chess, discovered my love for writing, and had enough time to think and figure out why I'm here. I'm religious so I believe that God showed my stubborn self who's the real God by taking my sight away, because I treated it like it was. Idk about you, but you'll have to figure out why life has brought you here. And honestly if I can accept it out of everyone, then anyone can.
eyelightss [OP] 4 points 1y ago
Thanks, i'm not religious so it's difficult to grasp with the reasoning other than understanding the science behind it. There's a genetic mutation that caused my retinas to behave in a way that's quite devastating to sight. If there is a God or some supreme being, I'd hope they wouldn't inflict such devastation on people to put them in their place or for the sake of their personal/spiritual growth.
LeDoTa 2 points 1y ago
Well, I used to think the same tbh. I even dropped out of my faith repeatedly because of it, even after I got sooooo many signs that God will give me my sight vack. I can't explain it, but I've had too many signs to count that told me that He would. Plus, it's in the Bible to not hav any gods before Him, so it's more my fault for not obeying, but that's just how I see it anyways. I'm sure it sounds crazy, but I'm so comfortable with whatever life has in store for me, and I thinkthis is where I was suppose to be this whole time. I used to say "I was the ONLY person I knew that DIDN'T take their sight for granted out of everyone in my life, so why did I lose it?!" But I treated my eyes like they were the reason where I was in life (not very far btw), and I'd be nothing or useless without them. Even if I stay blind, I learned how to be content with where I'm heading; not where I am.
TechnicalPragmatist 2 points 1y ago
Amen to this!
TechnicalPragmatist 1 points 1y ago
Yeah, I think leaning on Jesus can help people with their heart condition.
Competitive-Equal-95 2 points 1y ago
What condition do you have?
eyelightss [OP] 2 points 1y ago
RP
Competitive-Equal-95 2 points 1y ago
I do too but I can't really help you. I got over it but you have problems with that. Hope someone can help you.
RoadTrip2021 2 points 1y ago
I have RP, too, and am in the same "place" as you are. Some days I have my own "pity party", but other days are better. It's difficult knowing what our futures will be like. On bad days, I remind myself that I would rather have my future with RP than to have the future that some of my friends are facing (MS and Parkinson's).
There's $1 who has RP and a positive outlook! I hope to be like her someday.
There's $1 who has RP and a positive outlook! I hope to be like her someday.
TechnicalPragmatist 1 points 1y ago
Whatever you do it is important to push forward.
Have you gotten training for assistive technology, mobility and orientation and independent living skills. Either learn these through trainers who can come to your house or go to a center like one of the national federation of the blind ones. State centers also exist. Have you applied to vocational rehabilitation for the blind.
Just because you’re going blind doesn’t mean the end of life. You can still do your interests and a lot of time the same work just need to learn to adjust and adapt.
Have you gotten training for assistive technology, mobility and orientation and independent living skills. Either learn these through trainers who can come to your house or go to a center like one of the national federation of the blind ones. State centers also exist. Have you applied to vocational rehabilitation for the blind.
Just because you’re going blind doesn’t mean the end of life. You can still do your interests and a lot of time the same work just need to learn to adjust and adapt.
WorldlyLingonberry40 1 points 1y ago
Therapist won't give you independence, despite blindness. You need to obtain rehabilitation training on blindness core skills. Check out LCB or CCB.
eyelightss [OP] 2 points 1y ago
Therapists won't directly give you independence but therapy is often the first step in seeking meaningful rehab services. You won't accept an alternative to your lifestyle if you're not mentally prepared. You also may want to elaborate further as acronyms are not informative for those who are unfamiliar with what you're referring to.
WorldlyLingonberry40 1 points 1y ago
It's good that it is the first step to looking for meaningful rehabilitation.
WorldlyLingonberry40 1 points 1y ago
These are rehab centers for the blind. Louisiana Center for the Blind and Colorodo Center for the Blind.
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