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I lost my vision two years ago (self.Blind)
submitted by EffectiveYak0
Hi everyone. I'd like to share my vision story because I've been feeling extremely tired as of late and maybe sharing will help. I don't know if it's the pandemic, or the fact that I still haven't fully adjusted to my vision loss, or just low grade depression. I'm still trying to make sense of it after all of this time.
I'm 33 years old, was born fully sighted, and I lost my vision almost 2 years ago. It was about this time in 2019 when I started noticing that vision in my left eye was becoming blurry. Being an eternal optimist, I thought to myself "oh it must just be allergies. I'll get some eye drops and it'll be fine!" Days went by and the drops didn't help. I had headaches, and they were bad. Really bad. So bad, in fact, that I had to leave an event I was attending with friends to lie down in a hotel room.
"Maybe this is just eye strain, or a sinus problem," I thought to myself. But it wasn't. And as my vision continued to get worse I finally relented and went to an ophthalmologist. I'll never forget that visit because it set me on a path that has changed my life forever. It was a Friday like any other day. I was a bit annoyed because I had to skip work to deal with a doctor appointment. I had just been promoted and didn't want to appear like I was taking advantage of my new position as manager of my team.
I remember waiting anxiously in the patient intake room. I remember the smell of the office, and the big aquarium in the lobby filled with African cichlids. Everything seemed perfectly pedestrian. The doctor seemed to do his routine examination. But I wasn't prepared for his findings.
"I'd like to show you a chart of your retinal nerve fiber length," he said. The chart had some wavy lines running between strips of green, yellow and red. "We have a database that compares your length to forty-thousand similarly aged people," he said. "You can see that in many places you're in the bottom fifteen percent of people." My heart sank, and my wife started to tear up. "This is serious, and you need to get an MRI today."
Within a week I had: one MRI. one ordinary CT scan, and a CT angiogram of my head. After the angiogram we had our answer. A giant brain aneurysm was crushing my optic chiasm. It was about the size of a golf ball, maybe slightly smaller. The neurosurgeon I originally saw told us that a vascular bypass procedure came with a 30% chance of severe brain damage or death. The aneurysm was too big to clip.
Luckily we found a neurosurgeon in Boston who was able to place a stent over the mouth of the aneurysm. I had the surgery about two weeks after diagnosis. At that point my vision was already 20/80 and getting worse by the day. I remember thinking that I was going to have this all behind me, and that I'd adjust and get back to normal. But it kept getting worse, and two weeks later I was almost completely blind.
The surgery was successful, but the mass grew an additional 20% before it started to shrink and relieve pressure on my optic nerve. I spent the next 4 months completely blind and hallucinating due to Charles Bonnet syndrome. It wasn't until around Thanksgiving that I started to get a little bit of central vision back in my right eye. It's been slowly healing, but the doctors don't know to what extent my vision may return. As it stands, I've got something I like to think of as tunnel vision plus. I'm probably somewhere between low vision and legally blind due to visual field defects.
So it's been two years since I had my diagnosis. I'm tired of not being able to do things I used to enjoy. I'm tired of listening to screen readers. I'm tired of not being able to see anyone's whole face. I'm tired of waiting to find out what's going to happen with my vision and life. I'm tired of the profoundly isolating experience this has been in addition to being stuck in a pandemic.
I guess I'm just tired. Can anyone relate?
I'm 33 years old, was born fully sighted, and I lost my vision almost 2 years ago. It was about this time in 2019 when I started noticing that vision in my left eye was becoming blurry. Being an eternal optimist, I thought to myself "oh it must just be allergies. I'll get some eye drops and it'll be fine!" Days went by and the drops didn't help. I had headaches, and they were bad. Really bad. So bad, in fact, that I had to leave an event I was attending with friends to lie down in a hotel room.
"Maybe this is just eye strain, or a sinus problem," I thought to myself. But it wasn't. And as my vision continued to get worse I finally relented and went to an ophthalmologist. I'll never forget that visit because it set me on a path that has changed my life forever. It was a Friday like any other day. I was a bit annoyed because I had to skip work to deal with a doctor appointment. I had just been promoted and didn't want to appear like I was taking advantage of my new position as manager of my team.
I remember waiting anxiously in the patient intake room. I remember the smell of the office, and the big aquarium in the lobby filled with African cichlids. Everything seemed perfectly pedestrian. The doctor seemed to do his routine examination. But I wasn't prepared for his findings.
"I'd like to show you a chart of your retinal nerve fiber length," he said. The chart had some wavy lines running between strips of green, yellow and red. "We have a database that compares your length to forty-thousand similarly aged people," he said. "You can see that in many places you're in the bottom fifteen percent of people." My heart sank, and my wife started to tear up. "This is serious, and you need to get an MRI today."
Within a week I had: one MRI. one ordinary CT scan, and a CT angiogram of my head. After the angiogram we had our answer. A giant brain aneurysm was crushing my optic chiasm. It was about the size of a golf ball, maybe slightly smaller. The neurosurgeon I originally saw told us that a vascular bypass procedure came with a 30% chance of severe brain damage or death. The aneurysm was too big to clip.
Luckily we found a neurosurgeon in Boston who was able to place a stent over the mouth of the aneurysm. I had the surgery about two weeks after diagnosis. At that point my vision was already 20/80 and getting worse by the day. I remember thinking that I was going to have this all behind me, and that I'd adjust and get back to normal. But it kept getting worse, and two weeks later I was almost completely blind.
The surgery was successful, but the mass grew an additional 20% before it started to shrink and relieve pressure on my optic nerve. I spent the next 4 months completely blind and hallucinating due to Charles Bonnet syndrome. It wasn't until around Thanksgiving that I started to get a little bit of central vision back in my right eye. It's been slowly healing, but the doctors don't know to what extent my vision may return. As it stands, I've got something I like to think of as tunnel vision plus. I'm probably somewhere between low vision and legally blind due to visual field defects.
So it's been two years since I had my diagnosis. I'm tired of not being able to do things I used to enjoy. I'm tired of listening to screen readers. I'm tired of not being able to see anyone's whole face. I'm tired of waiting to find out what's going to happen with my vision and life. I'm tired of the profoundly isolating experience this has been in addition to being stuck in a pandemic.
I guess I'm just tired. Can anyone relate?
chovihanni-VIP 5 points 2y ago
Completely relatable...i became visually impaired on sept. 12, 2013 after a really bad day that I went into cardiac arrest twice and had 2 strokes. I have no left Vishal field in either eye (left homonymous hemianopsia) and my remaining visual field I am legally blind with no usable vision 8 ft and closer. I went to a 5 month intensive rehabilitation center for blind and low vision. It completely changed my world. That was in 2019, I thought I could do nothing for 7 years! Now I am in school on the Deans list, self employed, building my own accessible home, and embrace who I am. I have bad days, even this morning I find myself saying up blind...again...but know I got this because I cannot change it. Acceptance gets you a lot further on this road.
EffectiveYak0 [OP] 2 points 2y ago
Yes I think so.
While I was on my long term disability insurance I debated trying to go back to school. I'm in Texas and luckily state schools offer free tuition for legally blind students. I decided not to go this route, but I really think losing your vision requires a lot of self reflection and reinvention, but I think it's worth it in the end.
While I was on my long term disability insurance I debated trying to go back to school. I'm in Texas and luckily state schools offer free tuition for legally blind students. I decided not to go this route, but I really think losing your vision requires a lot of self reflection and reinvention, but I think it's worth it in the end.
lushlife_ 5 points 2y ago
Thanks for sharing. I lost the ability to read on my left eye due to scarring on the retina. I think it’s relayed to having had two retinal tears on that eye (closed and reattached with cryotherapy). Now I’m wondering if the same thing will happen in my right eye, which also has had two retinal tears.
And then my life would presumably completely change in terms of my ability to work and interact.
I find it sobering to read about your experience as I consider what the future may hold. I have many things to be happy for in life, but not sure how I would handle such a large change.
And then my life would presumably completely change in terms of my ability to work and interact.
I find it sobering to read about your experience as I consider what the future may hold. I have many things to be happy for in life, but not sure how I would handle such a large change.
EffectiveYak0 [OP] 4 points 2y ago
Losing vision so suddenly was extremely jarring, but I think I handled it as well as I could. I think the aspect of not knowing is also tough. I guess I hold on to some hope that my visual field will expand a bit over time.
In the meantime, I just try to wait and find new things I can enjoy. The pandemic makes it really hard, though.
In the meantime, I just try to wait and find new things I can enjoy. The pandemic makes it really hard, though.
Iamheno 3 points 2y ago
What things did you used to enjoy doing, you can no longer do? Maybe there’s a work around or a similar activity you can do instead?
it’s ok to be tired, it’s okay to be sad/angry./frustrating it’s okay to share.
it’s ok to be tired, it’s okay to be sad/angry./frustrating it’s okay to share.
EffectiveYak0 [OP] 3 points 2y ago
Reading technical books (scribd sucked, but I'm going to try amazon), watching Youtube videos, video games with friends, watching movies, and in general going to "see" things.
I tried watching a movie with my wife last week, but I can't figure out what's happening in most scenes without a description. I know there are description services... I might try them sometime.
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I just feel like everything is so slow. I can't get information into my brain fast enough anymore.
I tried watching a movie with my wife last week, but I can't figure out what's happening in most scenes without a description. I know there are description services... I might try them sometime.
​
I just feel like everything is so slow. I can't get information into my brain fast enough anymore.
MRMeneer 3 points 2y ago
There is a element of grieving still to be done and acceptance of the situation. Greiivign is different for each of us and different each time for us.
appreciating whatthe situation is and not quitting orgiving up but rather acknowledging what it is and where you are at is helpful.
No doubt about it. There are always tough days and times even for VI veterans or lifers as i call them.
I have always hada VI in 2012 I hada massive drop of vision in my right eye overnight and delayed goingto the doctor because of the continued fluctuation that glaudcoma can gring. Doctors still dont know what but here I am and adapting all over agin. Adaptation is a our mantra. its what we all become adept at doing and what frustrates us all.
acceptingthe here and now helps and relazing is important. The chips will fall where they fall regardless of your emotsional status and acceptance.. all that happens is we choose how much energy and emotional space and time we suck from our lives by worrying about it. This is better spent on loved ones and life.
That said it is an ongoing effort to do so.
appreciating whatthe situation is and not quitting orgiving up but rather acknowledging what it is and where you are at is helpful.
No doubt about it. There are always tough days and times even for VI veterans or lifers as i call them.
I have always hada VI in 2012 I hada massive drop of vision in my right eye overnight and delayed goingto the doctor because of the continued fluctuation that glaudcoma can gring. Doctors still dont know what but here I am and adapting all over agin. Adaptation is a our mantra. its what we all become adept at doing and what frustrates us all.
acceptingthe here and now helps and relazing is important. The chips will fall where they fall regardless of your emotsional status and acceptance.. all that happens is we choose how much energy and emotional space and time we suck from our lives by worrying about it. This is better spent on loved ones and life.
That said it is an ongoing effort to do so.
DrillInstructorJan 3 points 2y ago
Yes. I was 19 and at university and went from 20 20 to nothing in an afternoon, and they then spent six months saying well let's wait and find out what happens. When they say that the answer often is that they just don't know and there's not much else they can honestly say, but it's grim for you.
If it helps what you are saying is very normal and missing people's expressions is a really common wind up. And living in a world where everything talks to you in that sort of very even monotone sort of hammers you in the eardrum. You can sometimes tweak the pitch of the voice every so often which helps with that specific issue. I play bass guitars and it's like if you've been playing the same thing all day, hearing that same tone again and again. But yeah, everything beeps or talks.
If you want straight advice, you say you are waiting to find out what's going to happen to your vision and life. Stop waiting. Two years in, no question, just work on the basis it may not get better, even if you don't really know that. If it does, great. If not, people wait around expecting something to change and only realise years later that they just blew a load of time waiting.
Sorry if I seem harsh but this is why they call me the drill instructor. I don't know what your situation is with work and travel and mobility and stuff but it might be worth getting into a conversation about that as the only way to feel less shitty about things is to achieve stuff and you can do that. So where are you right now?
If it helps what you are saying is very normal and missing people's expressions is a really common wind up. And living in a world where everything talks to you in that sort of very even monotone sort of hammers you in the eardrum. You can sometimes tweak the pitch of the voice every so often which helps with that specific issue. I play bass guitars and it's like if you've been playing the same thing all day, hearing that same tone again and again. But yeah, everything beeps or talks.
If you want straight advice, you say you are waiting to find out what's going to happen to your vision and life. Stop waiting. Two years in, no question, just work on the basis it may not get better, even if you don't really know that. If it does, great. If not, people wait around expecting something to change and only realise years later that they just blew a load of time waiting.
Sorry if I seem harsh but this is why they call me the drill instructor. I don't know what your situation is with work and travel and mobility and stuff but it might be worth getting into a conversation about that as the only way to feel less shitty about things is to achieve stuff and you can do that. So where are you right now?
EffectiveYak0 [OP] 3 points 2y ago
Thanks. I've been thinking about this a lot lately in terms of career growth.
Rewinding a bit, after I went completely blind in 2019 I desperately tried to learn how to use a screen reader and work remotely. I was somewhat successful teaching myself how to use ChromeVox (Google's built in screen reader), but it was too difficult to keep up with my new job responsibilities as a manager. I also found that quite a few websites and applications were simply not accessible. I ended up giving up trying to work about two months into the whole ordeal.
Luckily, I had long term disability insurance that kicked in and helped pay the bills while I recovered a bit. I took about 8 months, and then was able to find a new job. Because I had recovered a bit of vision, interviewing was slightly easier. I work in tech, so the hardest part of technical interviewing is white board exercises. I debated whether to disclose my visual impairment. I opted to not do so, and had to wing it a few times. In fact, I almost made it through a 3.5 hour long technical interview without having to disclose except for the very end when they pointed at something on the board and asked me about it.
I'm getting a bit better with mobility. I tend to look through my peripheral vision now and hardly ever realize I'm doing it. It works okay in well lit areas. My depth perception is pretty much gone so I'm apprehensive about walking around uneven surfaces. I live within walking distance of a Target. I've been able to go and buy things on my own. The biggest challenge is just trying to figure out where the hell things are located. I have to scan everything with my limited central vision. Sometimes it works, sometimes it doesn't.
I think my goal is to just get more efficient with the tools I use. My experience thus far has been that there isn't a great one size fits all in this area. I'm going to work on building my own screen reader for linux because I just don't like orca. I just wish things were easier.
Rewinding a bit, after I went completely blind in 2019 I desperately tried to learn how to use a screen reader and work remotely. I was somewhat successful teaching myself how to use ChromeVox (Google's built in screen reader), but it was too difficult to keep up with my new job responsibilities as a manager. I also found that quite a few websites and applications were simply not accessible. I ended up giving up trying to work about two months into the whole ordeal.
Luckily, I had long term disability insurance that kicked in and helped pay the bills while I recovered a bit. I took about 8 months, and then was able to find a new job. Because I had recovered a bit of vision, interviewing was slightly easier. I work in tech, so the hardest part of technical interviewing is white board exercises. I debated whether to disclose my visual impairment. I opted to not do so, and had to wing it a few times. In fact, I almost made it through a 3.5 hour long technical interview without having to disclose except for the very end when they pointed at something on the board and asked me about it.
I'm getting a bit better with mobility. I tend to look through my peripheral vision now and hardly ever realize I'm doing it. It works okay in well lit areas. My depth perception is pretty much gone so I'm apprehensive about walking around uneven surfaces. I live within walking distance of a Target. I've been able to go and buy things on my own. The biggest challenge is just trying to figure out where the hell things are located. I have to scan everything with my limited central vision. Sometimes it works, sometimes it doesn't.
I think my goal is to just get more efficient with the tools I use. My experience thus far has been that there isn't a great one size fits all in this area. I'm going to work on building my own screen reader for linux because I just don't like orca. I just wish things were easier.
DrillInstructorJan 2 points 2y ago
It's hard for me to advise much on the technical stuff as it isn't something I've had much experience of. I don't think a lot of people are relying on Chrome Vox for most things; I'm a Jaws person as that's what was going around when I started but I suspect you would want to look at NVDA these days.
As to whether you tell people, I don't have much choice as I can't see at all and in most circumstances people can figure that out fairly quickly. I have been able to occasionally sit and bars with shades on and have long conversations with people without them twigging it but that's an exception. One thing I sometimes do if I'm concerned about how people will react is to get to know them first on the phone, or you can maybe do it in person if your sight is good enough to get by socially, and then go into a professional environment once they know you. It's much harder for people to write you off once they know you as a person. Not that most people do that anyway! But it never hurts.
I know it's not something people want to hear sometimes but if you're having trouble with uneven surfaces you need a cane. You don't say whether you're using one right now but they help way more than you'd think they possibly could, for just being a stick. Finding things on shelves I can't help you with as it's really not a strong point for me either but getting to the point where you can use a cane and get around without being constantly worried about tripping on stuff is really important. I know that you're probably sitting there grinding your teeth at the idea, if you haven't, but seriously.
As to whether you tell people, I don't have much choice as I can't see at all and in most circumstances people can figure that out fairly quickly. I have been able to occasionally sit and bars with shades on and have long conversations with people without them twigging it but that's an exception. One thing I sometimes do if I'm concerned about how people will react is to get to know them first on the phone, or you can maybe do it in person if your sight is good enough to get by socially, and then go into a professional environment once they know you. It's much harder for people to write you off once they know you as a person. Not that most people do that anyway! But it never hurts.
I know it's not something people want to hear sometimes but if you're having trouble with uneven surfaces you need a cane. You don't say whether you're using one right now but they help way more than you'd think they possibly could, for just being a stick. Finding things on shelves I can't help you with as it's really not a strong point for me either but getting to the point where you can use a cane and get around without being constantly worried about tripping on stuff is really important. I know that you're probably sitting there grinding your teeth at the idea, if you haven't, but seriously.
DHamlinMusic 2 points 1y ago
This is way too familiar to me, brain bleed caused by a knife warned not an aneurysm but otherwise pretty damn similar afterwards. The entertaining various visual hallucinations / figments, the absolutely nothing then little bits coming back, getting told just to wait or that you're not getting anything back and then getting stuff back. Definitely frustrating, and you definitely get very tired of it, it's about a month shy of 2 years for me so based on the age of this post you lost your vision about a year before I did.
EffectiveYak0 [OP] 1 points 1y ago
Charles Bonet syndrome is the official term for the visual hallucinations. And yeah, optic nerve damage manifests in weird ways.
soselections 2 points 2y ago
I relate to this, especially "I'm tired of the profoundly isolating experience"
My vision rapidly changed as well. I was 19 when I first saw the opthalmologist and started getting surgeries immediately. For me, it was a loss of vision that wouldn't recover, but instead has to be constantly maintained even now.
I was 19 and in college. Surrounded by sighted people. I didn't know anyone my age with vision impairments. Initially my opthalmologist said he had no idea what kind/if any vision would be left after surgeries. I used to go to the bathroom and cry during lecture. In hindsight, I realize I was grieving. I felt so alone, so isolated, so different in a way I didn't like.
I can't complain too much though, I have a good amount of vision. It fluctuates a lot. I have to see my opthalmologist every ~4-6 weeks (mostly for eye shots).
My vision rapidly changed as well. I was 19 when I first saw the opthalmologist and started getting surgeries immediately. For me, it was a loss of vision that wouldn't recover, but instead has to be constantly maintained even now.
I was 19 and in college. Surrounded by sighted people. I didn't know anyone my age with vision impairments. Initially my opthalmologist said he had no idea what kind/if any vision would be left after surgeries. I used to go to the bathroom and cry during lecture. In hindsight, I realize I was grieving. I felt so alone, so isolated, so different in a way I didn't like.
I can't complain too much though, I have a good amount of vision. It fluctuates a lot. I have to see my opthalmologist every ~4-6 weeks (mostly for eye shots).
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