# Anyone else recently declared legally blind?

Category: Elder Folk

## Post 1 by Northcountryguy (Generic Zoner) on Saturday, 22-Oct-2016 1:05:19

I'm 60, and still relatively new to the whole blindness thing. I've had NTG with visible
pericentral field losses since about age 40. Until two years ago my peripheral vision
wasn't actually that bad, and pieces of missing fields didn't overlap much, so with both
eyes open I had pretty intact if odd vision. I rode motorcycles, including several NY to FL
runs, until two yrs ago, and stopped driving entirely less than a yr ago.
I've had trab surgeries and other stuff including recent cataracts. The eyes no longer
track together, so my worst eye is patched to allow use of the remaining small central
island and bits of periphery. I'm about to go to guide dog school at this point.
Meanwhile, I'm struggling with mindset and feelings. I'm a typical diagnostic type. I
figure out solutions, not interested in acceptance of issues until remedies are tried and
exhausted... yet I'm torn. In a sense, the gradual loss is tough. I almost get a handle on a
specific issue, deficit, or solution, and the condition changes. I feel like an economist,
always, fucking always fixing yesterday's problem, while simultaneously assessing the
shifting reality. Some days I surrender somewhat. I am studying the braille for the
sighted, learning to read the dots visually and translate. I've got an appt. With my low
vision tech at VA to get braille materials to learn the tactile part. I'm working my cane,
and dealing with day to day issues like training housemates to put stuff back and not
clutter cupboards and stuff. I'm trying to learn to "be" as a blind person, imagining next
year....
But other days I'm like "screw this". I just go ahead and function like an inconvenienced
sighted person... its actually less successful at times, yet easier because vision
dependence we know how to do, even in next to no light. So i happily stumble like a
drunk in a power failure, or struggle with (to my sighted, motorcycle racer, RC pilot,
competition shooter life framework) piss poor substitutes like that glorified stick we feel
our way with, disgusted with the excruciatingly slow EVERYTHING......
Add to that waitresses and doctors alike see my goofy, half blacked out glasses and my
cane, and speak to my companion instead of to me. I wanna scream " I am a person,
asshole!"
So how do you deal with that role conflict, point of view , or whatever its called? How do
you find peace when this stuff keeps stealing my damned life, or so it seems?

## Post 2 by forereel (Just posting.) on Saturday, 22-Oct-2016 22:44:44

Legally and blind are different, but here’s my opinion.
You don’t deal, you accept.
Accept means others speaking to your companion, and treating you differently.
You did it when you could see, so think about how you felt about the blind, and being blind now yourself.
You were once an asshole.
That will bring you to understanding.
You are not a blind person, you are a person that doesn’t see well, and will learn to be efficient with practice.
Ride your bike up and down the drive, or in a field, or with your companion guiding you from behind in a safe place, but you need not stop riding, only on the public streets.
Less speed as well.
Wake up, smile. You are still a complete person, you just need to adapt a bit is all.
Your mistakes are your teachers, not your failures.
Ask questions and I’m sure we’ll try our best to give you answers.

## Post 3 by Northcountryguy (Generic Zoner) on Sunday, 23-Oct-2016 12:06:01

Yeah, I try to stay focused on accepting vs tilting at windmills. But honestly figuring
where to draw the line between acceptance, allowing the perpetuation of stupid stuff,
like people clamming up when I approach with the cane, making me want to say "keep
talking. At least I know you're there" when lighting or glare or my many blind spots
obscure surroundings. Other times I think "I just wanna get through the day intact,
without incredible frustration. I don't want to be a spokesman, educating the public..."
But I know none of us chose this path, and especially once I get a dog, I'm gonna be part
spokesman for my alien tribe, part explorer, part student, with the notion of anything
resembling boring, confident routine a figment....
It isn't the nuts and bolts. Even I can figure how to...... its the finding my place socially
and getting a reliable grip on how to "be" that person some folks will always see as "the
blind guy" and nothing more. That's the hard part for me. Having extremely variable sight
adds to uncertainty for family and friends. One day I can't see much of nothing as we
enter a restaurant, so I caution that I need human guide help. The next time, maybe its
dark out, small lights and candles light the room, but no glare from windows, and my
companion is confused when I slip right through the crowded room unaided. Half the
time the cane and my ability to see somewhat causes confusion.
Mostly I end up living in a pretty small bubble. I focus on whatever excruciatingly slow
task, like shopping for clothes, and the other shoppers become scenery I ignore unless
we crash into one another. Rarely will they speak, and I simply don't either..... its fucked
up, but has protective value.

## Post 4 by forereel (Just posting.) on Sunday, 23-Oct-2016 13:20:38

I’m not deliberately trying to be rude, mean, or unfeeling, so read what I say with that in mind.
Your post, or perceptions sound like someone writing a book or story, not what is actual.
Example, your companion is confused with you “slip through a crowded room unnoticed.”
You live in a bubble, but you go shopping for clothes?
You once could see and see well, so you know it is impossible for a blind man with a cane to slip through a crowded room at all. You are recently blind, but I think you’ve mainly decided the things that should happen to you, so take them on because you’ve heard stories of other blind persons experiences.
Sure, not being able to see causes confusing, but not every time?
You have a seeing companion, so that alone puts that to rest if you let your companion lead you in places you’ve never been in, or have forgotten until you are practiced.
When you get your dog, you won’t automatically become bothered. Sometimes maybe, but it isn’t the rule, nor are you always a spokesmen for the blind.
I am blind, and have been for a really long time. I go out to get a coffee do my shopping, have a meal, a beer at the bar or whatever, and maybe, and that is maybe, once a week, once a month, someone will attempt to help me, or ask a question, but mainly, I’m just like everyone else in the place getting his coffee.
What I’m trying to say, is if, and I’m letting that statement ride generally, if, you are experiencing all these things, and so soon, it is because you want to have this epic experience.
Maybe, you are creating things that aren’t actually happening, because you have heard they do.
Like slipping through that crowd.
My advice is to relax and let go of the typical blind person experiences and start to have your own
Out shopping for clothes the shoppers become, scenery?
If you do this, the next time you are shopping for clothes it might surprise you that the other shoppers, if there even happens to be some near you, are simply doing the same thing you are.
When they move away, or whatever, it isn’t because of you, it is because they are shopping for clothes.
Your post read almost as if you have become this center of a blind persons experiences.
If you just want to be that blind guy getting on in the world, you’ll need to get out of the story and live the reality of your life.
It isn’t a story, it is sort of plain, and mostly boring unless you do something exciting.
Sorry, I just had to tell you my thoughts.

## Post 5 by Northcountryguy (Generic Zoner) on Sunday, 23-Oct-2016 14:21:47

Forereel, I'm not sure how to respond. I hope you didn't say you think I'm making it up. If
you did, we are done talking. My experiences are what they are, and life is a pretty well
mixed bag of odd ones along with usual boring stuff. Why would I talk about the time I
get coffee without overt notice, or the time someone holds a door nicely? But the time a
man holds a door as I approach, then his wife sees me go right to a shelf (shorelining to
avoid crashing thru racks of chips, etc lining the aisle)and find a candy bar, and says to
him " I told you he could see...." I end up feeling caught between sighted and blind, and
the implication that I'm somehow being dishonest burns my ass.
So yeah such incidents piss me off. I didn't sign up to try to explain my litany of vision
issues to random strangers who see cane and expect total blindness, or to someone
who sees me bent over a menu, read it after a fashion, then insist I look at a tv across
the room that is a blur to me. People can't understand damaged vision without a detailed
explanation, and I'm torn between the impulse to be understood and the desire to just
get on with whatever the purpose of our interaction is. The variability of my vision based
on subtle environmental changes or simply getting tired, as well as the changes over a
pretty short time make it tough even for family to gauge appropriate levels of helping.
My son is pretty good at human guide. My other friend not so much. She does well if she
concentrates, but will often lapse into a mode like she is leading a sighted person,
walking me into a chair, etc on my totally blind side.....
As to literary style, I'm trying to focus in and capture feelings I am struggling to either
give weight or dismiss, finding my voice I guess. If you take exception to that, I didn't
know we graded on whether or not it sounded like a story. Really?
I thank you for replying.

## Post 6 by forereel (Just posting.) on Sunday, 23-Oct-2016 19:17:55

If you read the top of my post you'd understand were I'm coming from.
I don't think you're making them up.
What I think is you are projecting things in to your experiences that aren't actually happening due to what you expect them to be.
This isn't an argument, but my attempt to help you understand that when you are on the defense you may feel oppression when you aren’t actually being oppressed.
Now, I’m not there, so I can’t say this for sure.
I do know that sometimes people do put themselves in a tighter pair of shoes, so to speak, then they actual are just because they think the shoes are tight.
Let me give you an example.
Someone opens the door for you, and you notice his wife is moving out of your way quickly.
You can perceive her moving a couple ways. She doesn’t want me near her, or she’s just trying to be careful and help me get through the door without her being an obstruction.
If you want to take the negative perception, that is what you’ll do, but there just might be another reason, and it isn’t negative at all.
Let me give you another example I used in my other post.
You felt as if you slipped through a crowded room and nobody noticed you.
If you think about that, it simply couldn’t have been. What did you expect the people to do?
I’m serious. Did you expect them to make a big deal because, well, here’s a blind man trying to get through a crowd, or suppose they just continued on with their talking, eating, or whatever they were doing, and didn’t make a big deal out of your moving past them?
Because they didn’t make a speech, help you, or whatever doesn’t mean they didn’t notice you. They had to.
When you could see, did people make a big deal or do anything specific when you were trying to get through a crowd?
What did you expect now?
The thing is, if you insist on having this epic blind man experience, you’ll have a difficult time adjusting to being just a guy that doesn’t see well, not a blind guy.
If you look at experiences as they probably are, or don’t get so emotionally tied in to that, people are treating me differently thing, you’ll live a much happier life.
Sure, it is going to happen, but it isn’t happening all the time.
Your first task is to adjust, not be concerned about the other people. I think if you concentrate on you, and adjusting, you’ll find your world will be a much nicer place.
I’ll not post on this board again. I just figured you needed to be told by a person who could once see as well to deal with your reality, not what you want it to be or misperceive it to be.
You put blocks in your way that probably aren’t actually there.
If they are, you really need to get on and let them go so you can deal with your personal adjustments.
I’ll say this again. I’m not being mean, or whatever.

## Post 7 by forereel (Just posting.) on Sunday, 23-Oct-2016 19:54:34

I need to add this.
When I say unnoticed and you say you were unaided, I am talking about the same.
I am sorry people make rude remarks sometimes, and disbelieve you, but that isn't what I'm doing.
I think maybe I should have allow this board to rest like the others seem to have.
Smile.
I've reread my post, and I don't guess I've done a good job explaining what I'm trying to get across.

## Post 8 by lalady (This site is so "educational") on Tuesday, 25-Oct-2016 0:47:13

Hi. I can so relate to what you are describing. Actually Iwent through something very similar years ago when I lost my sight gradually, very gradually while I was in college. I was diagnosed with Retinitis Pigmentosis in my late teens and things started goin downhill from that point on. Some days I could see quite well,as in able to read and take notes in class and walk around on campus normally. Other daysI was not able to function very well at all. It all depended on the glare of the sun or how cloudy it was outsideor how the well the lighting was inside. Always, I had night blindness and could only function as a blind person. Each day I faced new circumstances and must say that it was very frustrating to function not only in daily routine living, but I was trying to pass my college courses and was determined not to give up even though I did not know braille or even have any training in using a cane. Losing my sight bit by bit took about 6 years or so. I must admit now that I went through a period of being angry, or sad. and always frustrated. Peace did not come easily or quickly. What I can say is that only when I had completed rehab after graduation and learned braille and cane travel and prepared myself to face life as a blind person did I really have any success in accepting myself as a whole person worthy of the same happiness as sighted people. That acceptance did not happen overnight, but was a gradual process that mainly occurred when I began having small successes in every day living. Then, and only then, did I begin to view myself as a complete person with many of the abilities as other people, sighted or blind. Accepting my blindness was and still is a mind-set that I have control of. I decided that life is too short to constantly be looking for reasons why the world might be better if only... Sometimes we have to change our way of looking at things if we are to be happy. I don't know if any of my rambling has helped or even made any sense,but I hope it has. Good luck and most of all, peace to you.

## Post 9 by Northcountryguy (Generic Zoner) on Tuesday, 25-Oct-2016 23:58:45

Thanks Lalady. It's comforting to know these feelings and changes are more or less par
for the course with the ongoing process of loss of vision and competence in the visual
world, while scrambling to learn skills I'm rapidly needing. I'm sometimes put off when
people say they or their blind uncle can do anything a sighted person can. Sorry, but that
koolaid wont go down easy here.I was sighted, and did lots of heavily vision dependant
things. I raced motorcycles, I flew radio controlled planes, and was a competition
shooter and expert race gun smith. I did engineering and design work on very precision
small parts. None of that happens when I'm blind. Sight casting a fly to a fish, ditto. I
spent my life outdoors, boats, motorcycles, shooting, fishing...
So much of what I did for forty years is gone or going. Its an unnatural acceleration of
aging, except my brain and body except the eyes is still young. A head trip to me.

## Post 10 by LeoGuardian (You mean there is something outside of this room with my computer in it?) on Thursday, 27-Oct-2016 17:24:37

Hello,
I'm a lifer, someone who has been blind my whole life. No optic nerves here.
I sympathize with the grief and loss aspect, even when I was younger and quite callow I sympathized with the grief and loss aspect, mainly because I lost friends to being shot or getting AIDS and the like, and recently-blind people sound somewhat the same as that when describing their experiences.
I will say that the pressure to be some kind of spokesman is unrealistic, and I join you in rejecting it all.
What I do find is that when I'm unsure in an area, when I'm not feeling well like being at a medical facility or other similar vulnerable positions is when I encounter the types of experiences you describe. It's irritating and more, you're right, because it's then that you actually do need some real human understanding. I don't have any real answers for you on some of this stuff.
I will say, like Wayne, I go into and out of places without incident, but that's because I know the area really well, and that can take time.
Another aspect to this that I think some of us miss: I've never seen, and so don't necessarily know what to expect. My expectations of some things are probably lower than those of someone who used to have sight. That doesn't mean you should adjust yours, but I think it's a factor you may experience with some people who have never had sight.
Now Wayne said to remember what it was like being sighted, that you may have been that asshole once. Maybe, but maybe not. In my personal experience as a blind person, there are populations of people who seem to attract those kinds of assholes, then there are others who are pretty easygoing about it.
You mentioned doctors, I would say medical people can be some of the hardest to deal with in that situation. Part of the problem is that you actually need something when you're there, and you really are out of your element.
Interestingly, when I was a performing musician I had little problems that way. I don't know if it's true anymore with all the expectations of digital meters and the like. I'm just breaking back into music after a 20 year hiatus.
Certain populations will do it more than others. Hang out with the boys at the bar, you're likely to be all right. Be in some sort of polite society environment, all bets are off. I find people who've been in the military tend to be pretty easygoing about it also.
Anyway, hope some of this helps. And again, I realize i'm not the demographic you're looking to talk to, but you've got my sympathies.
You can check out my board posts, you're not gonna find me pretending to have done any heroics or some super-blind acts, I'm just an average guy with a 20-something daughter living at home again, aging parents, right in the middle of the midlife "What-in-the-hell-happened" phase of my life at the moment.

## Post 11 by Northcountryguy (Generic Zoner) on Friday, 28-Oct-2016 21:46:20

Thanks Leo. I agree you can't know the feeling of loss associated with something you
never had. It would be like me claiming to understand a woman losing a breast. Wtf do I
know about it?
That said, the functional aspect of truly sightless living are only a glimmer (visual
representation of course) that I'm having now, as I lose the ability to focus except in a
narrow distance frame. Imagine a guitar with only one correctly tuned string. You can
make noise with it, but only a hero could make anything resembling music. Where once I
had the eyes of a sharpshooter and pilot, etc, I got junk.
The famous rehab people who wrote the programs used since world war 2 characterize
losing sight as second only to the fear of death for most people. I survived spinal
surgeries, cancer, buried my parents and two exes. This shit is different because it is the
loss of previous competence, going in less than two years from motorcycling up and
down the east coast to losing my license and very nearly the ability to read as clarity and
visual field angle dissolves. It's been described as the slow death of the sighted self.
Some even say its easier to lose sight catastrophically as in an accident, horrid as that
sounds, because for me the days are a continuing saga of inexorable loss, causing one
to process grief over and over. It's a fucking ride for sure. And yet I'm not quite blind, so
can't imagine your world quite yet.
I'd like to think I'm not that asshole, nor was I ever. At age 6 I befriended a man blinded in
ww2. He had a dog, and sold cigarettes and candy at a kiosk in the post office. I used to
run errands for him and act as visual interpreter when He would hear or smell something
and wanted a picture...
I worked as a teacher for mentally handicapped folks. My best friend is legally blind
following a stroke 15 yrs ago. He would tell you I see him as Mark. Mark falls over stuff
at night or bumps into people at times, but when we enter a crowded restaurant with one
sighted friend, he follows the sighted person, I follow Mark. I would trust him with my
life.
So far it's a mixed bag, but yes, when I most need help, feel vulnerable, I'm sometimes
frustrated most by those who should be helping, not the unknowing public. Its humbling
when I know what to do but have to count on others to do....
So who ever said life was gonna be easy? It is what it is. I guess much of what I'm after
isn't nuts and bolts answers. That stuff works out. I think its more knowing I'm following
an expected course. Like when you lose a loved one and it hits hard, sometimes
someone remembers losing their mom, etc and reminds us its a part of the process and
we are not alone nor losing our mind permanently, even when we can't see the path
ahead.
Cheers my friend.