Blind and Visually Impaired Community
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Recent Lurker and Prolific Retinopathy Suffer - Long [USA] (self.Blind)
submitted by blazblu82
Greetings,
I (39m) am not quite blind, but getting there. Was DX'd with Prolific Retinopathy with Macular Edema in both eyes about 2.5 years ago. Since then, I have had 7 laser sessions and a failed vitrectomy. Currently home from work due to a recent bleed event involving left eye which will likely lead to surgery in January.
This adventure has been moving at a faster pace than I can keep up with. I am down to one "good" eye since the failed surgery earlier this year. Stopped driving last October, then bought a car in August since good eye was doing good. Drove it for two months before good eye got a major bleed from simply bending over at work. Now I'm working on getting the car returned and trying to figure out other transportation options on getting to work.
I'm not sure how much longer my left eye has before it's done, too. It already has a birth defect where retina did not fully develop and that has created a blind spot that cuts out about 25% of the vision in that eye. In addition, I see random spots through vision that range in white, blue, red, green and black. Also get an occasional flash of light. The refresh rate of that eye is low, too, where static images linger in vision longer than they should. I can take a pen light and draw shapes in that eye, like one would with sparklers at night.
I feel very lost with this situation and getting help has been hit and miss. I've seen a vision rehab dr 3 times now and so far, they have not offered anything beneficial. I've tried using various colors of sunglasses to no avail. Visual acuity changes with the environment. I can't stay outside or under bright lights for too long, otherwise my vision gets very blurry.
I know, personally, I have changed a lot. Thunderstorms freak me out and I get startled by the slightest sounds sometimes. I can hear things I used to not hear and I cannot handle being in crowded situations with lots of people. It's like my brain can't filter the noise and it all goes in at once. I also find myself staying isolated a lot. It sucks living alone and not having anyone to talk to on a regular basis. Even when I work, I work night shift alone 99% of the time.
Anyways, has anyone else been down a similar road? If so, how did you handle it and were you able to get the help you needed to make the transition into blindness a little easier? I have no idea what kind of time frame I have left with my left eye, I just know things aren't getting better and I'm already sick of the way things are.
I (39m) am not quite blind, but getting there. Was DX'd with Prolific Retinopathy with Macular Edema in both eyes about 2.5 years ago. Since then, I have had 7 laser sessions and a failed vitrectomy. Currently home from work due to a recent bleed event involving left eye which will likely lead to surgery in January.
This adventure has been moving at a faster pace than I can keep up with. I am down to one "good" eye since the failed surgery earlier this year. Stopped driving last October, then bought a car in August since good eye was doing good. Drove it for two months before good eye got a major bleed from simply bending over at work. Now I'm working on getting the car returned and trying to figure out other transportation options on getting to work.
I'm not sure how much longer my left eye has before it's done, too. It already has a birth defect where retina did not fully develop and that has created a blind spot that cuts out about 25% of the vision in that eye. In addition, I see random spots through vision that range in white, blue, red, green and black. Also get an occasional flash of light. The refresh rate of that eye is low, too, where static images linger in vision longer than they should. I can take a pen light and draw shapes in that eye, like one would with sparklers at night.
I feel very lost with this situation and getting help has been hit and miss. I've seen a vision rehab dr 3 times now and so far, they have not offered anything beneficial. I've tried using various colors of sunglasses to no avail. Visual acuity changes with the environment. I can't stay outside or under bright lights for too long, otherwise my vision gets very blurry.
I know, personally, I have changed a lot. Thunderstorms freak me out and I get startled by the slightest sounds sometimes. I can hear things I used to not hear and I cannot handle being in crowded situations with lots of people. It's like my brain can't filter the noise and it all goes in at once. I also find myself staying isolated a lot. It sucks living alone and not having anyone to talk to on a regular basis. Even when I work, I work night shift alone 99% of the time.
Anyways, has anyone else been down a similar road? If so, how did you handle it and were you able to get the help you needed to make the transition into blindness a little easier? I have no idea what kind of time frame I have left with my left eye, I just know things aren't getting better and I'm already sick of the way things are.
OldManOnFire 9 points 1y ago
Hey Blaz. Welcome aboard!
In many ways I've been lucky. I've got a fantastic support system in place. My wife and two of my daughters are nurses. They translate the medical terminology into easy to understand words so my little caveman brain can understand, but that's not why I say I'm lucky. The family supports me. No matter where I go I have a loved one's hand to hold. They drive me places. They laugh at my jokes. They make me feel important. I don't even want to imagine what going blind would be for someone living alone.
My respect for anyone with the strength to navigate this journey alone is, well, just wow! You guys inspire me. If you forget everything else I write today I hope you remember how much strength I see in you.
It gets easier. My life as a blind man has been just as good and just as happy as it was when I could see. I was in a good place then and I'm a different good place now. Being blind isn't nearly as hard as going blind. The destination is fine but the journey is hell.
Nobody's ready for it. We've all been in pitch black rooms and we've all imagined being blind. We've even closed our eyes for a few minutes and felt our way around, imagining what it's like. But none of us imagined the emotional aspects of it. The grief, the sense of loss, the trauma to our self esteem of going from respected to pitied. We all have to come to terms with it, and I think for most of us it's harder to deal with the emotional loss than the loss of our eyesight. It certainly was for me.
I'll cut to the punchline: You are not your eyesight. You are not your job performance. You are not your grades. You are not your disability. You are not your limitations. You are you. But if you're like I was then you haven't realized that yet, and when you lose your eyesight and your job you'll feel like you've lost part of yourself. It's emotionally traumatic. Yet every catastrophe is also an opportunity. Where you once felt pride in being named Employee of the Month you'll find pride in being something else, and it won't take long once you're outside of the hamster wheel to realize yeah, you made is spin really fast, but it doesn't matter. You matter. What you did isn't who you are, and you can walk away from the hamster wheel whole and complete and happy without it.
You mentioned you've lurked here so you've probably heard me preach about blind bucket lists, but just in case you haven't, I suggest you make a blind bucket list. Do all the things you want to do while you still have enough functional eyesight to do them. Visit your loved ones and make some memories you can keep once you're unable to see them anymore. Build a snowman and throw some snowballs at it. Go skeet shooting. Paint a picture. Try boxing. Visit the State Park you live next to but have always been too busy to visit. Binge watch that tv show you never got around to watching. The details don't matter, just use the eyesight you have left in such a way that if it goes you won't have any regrets.
In many ways I've been lucky. I've got a fantastic support system in place. My wife and two of my daughters are nurses. They translate the medical terminology into easy to understand words so my little caveman brain can understand, but that's not why I say I'm lucky. The family supports me. No matter where I go I have a loved one's hand to hold. They drive me places. They laugh at my jokes. They make me feel important. I don't even want to imagine what going blind would be for someone living alone.
My respect for anyone with the strength to navigate this journey alone is, well, just wow! You guys inspire me. If you forget everything else I write today I hope you remember how much strength I see in you.
It gets easier. My life as a blind man has been just as good and just as happy as it was when I could see. I was in a good place then and I'm a different good place now. Being blind isn't nearly as hard as going blind. The destination is fine but the journey is hell.
Nobody's ready for it. We've all been in pitch black rooms and we've all imagined being blind. We've even closed our eyes for a few minutes and felt our way around, imagining what it's like. But none of us imagined the emotional aspects of it. The grief, the sense of loss, the trauma to our self esteem of going from respected to pitied. We all have to come to terms with it, and I think for most of us it's harder to deal with the emotional loss than the loss of our eyesight. It certainly was for me.
I'll cut to the punchline: You are not your eyesight. You are not your job performance. You are not your grades. You are not your disability. You are not your limitations. You are you. But if you're like I was then you haven't realized that yet, and when you lose your eyesight and your job you'll feel like you've lost part of yourself. It's emotionally traumatic. Yet every catastrophe is also an opportunity. Where you once felt pride in being named Employee of the Month you'll find pride in being something else, and it won't take long once you're outside of the hamster wheel to realize yeah, you made is spin really fast, but it doesn't matter. You matter. What you did isn't who you are, and you can walk away from the hamster wheel whole and complete and happy without it.
You mentioned you've lurked here so you've probably heard me preach about blind bucket lists, but just in case you haven't, I suggest you make a blind bucket list. Do all the things you want to do while you still have enough functional eyesight to do them. Visit your loved ones and make some memories you can keep once you're unable to see them anymore. Build a snowman and throw some snowballs at it. Go skeet shooting. Paint a picture. Try boxing. Visit the State Park you live next to but have always been too busy to visit. Binge watch that tv show you never got around to watching. The details don't matter, just use the eyesight you have left in such a way that if it goes you won't have any regrets.
blazblu82 [OP] 6 points 1y ago
I appreciate the kind words! I definitely have a "bucket list"; however, doubt I will get to be proactive about it. I don't have the income or means to do it all.
I am still getting things figured out and this part is slow going. I'm basically teetering on the edge with my vision. I don't want to make huge life changes if it's not needed yet; however, I feel like I need to in order to prepare. Ultimately, all of this is solely dictated on how much the retinopathy progresses at this point.
I had a meeting with my employer last Friday about my situation. They are finally getting on board in providing some help. When I stopped driving last year, I figured things would be fine as long as I could get a ride with a coworker. That worked out ok, until they needed time off, then I had Uber to rely on. I don't mind using Uber on occasion, but it is absolutely unaffordable to use on a regular basis. Been pushing my employer to help me out with that and now they finally are, at least for getting home. No way I was going to spend 700 a month just to go to work and back home.
Now I just need to figure out how to get to work. Employer wants me to check into transport service for the disabled, but not having much luck. Local city does have paratransit, but after reading about them, they seem unreliable. City has a bus route, but since I work evenings, it wouldn't work; plus, nearest pickup is about 3 miles away. I'm hoping they can find someone at work I can get a ride with.
Thanks again!
I am still getting things figured out and this part is slow going. I'm basically teetering on the edge with my vision. I don't want to make huge life changes if it's not needed yet; however, I feel like I need to in order to prepare. Ultimately, all of this is solely dictated on how much the retinopathy progresses at this point.
I had a meeting with my employer last Friday about my situation. They are finally getting on board in providing some help. When I stopped driving last year, I figured things would be fine as long as I could get a ride with a coworker. That worked out ok, until they needed time off, then I had Uber to rely on. I don't mind using Uber on occasion, but it is absolutely unaffordable to use on a regular basis. Been pushing my employer to help me out with that and now they finally are, at least for getting home. No way I was going to spend 700 a month just to go to work and back home.
Now I just need to figure out how to get to work. Employer wants me to check into transport service for the disabled, but not having much luck. Local city does have paratransit, but after reading about them, they seem unreliable. City has a bus route, but since I work evenings, it wouldn't work; plus, nearest pickup is about 3 miles away. I'm hoping they can find someone at work I can get a ride with.
Thanks again!
[deleted] 1 points 1y ago
[deleted]
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