1 (edited by Caccio72 2017-07-16 06:58:45)

Greetings to all fellow VIP gamers!

Unfortunately, to all those of You who might care, I have to announce a catastrophic, extremely shocking news, a true disaster, which made me severely depressed!

Some of You may know by now, that I totally lost my vision round 1 and half years ago, but that was by far not the end of all my miseries.
It was not enough, that I lost my left eye right after my birth, due the carelessness of a nurse, it was not enough, that I had to live my whole life with only one functioning eye, it was not enough that a large, malicious tumor was encountered in it over 3 years ago...it wasn't even enough that I totally lost my vision due it round 1 and half years ago...now, at my last hospital control-check, it was told to me, that absolutely nothing more can be done to save my still remaining one eyeball, so even that remaining one must be removed, in order to prevent tumor-transmission-risks!
I was also told, that this "surgical intervention" will be inevitable sooner or later, even without any transmissions, due the enormous, unendurable pain, which will be caused by the constantly growing tumor.

I was already proposed the eyeball-removal surgery, but normally I refused it for now, and decided to delay it for as long as it is possible...
Even thinking of wearing a mere,  lifeless ball over my neck, so without even a sense of a single one existing eyeball, like some stuffed, glass- or plastic-eyed dummy...this thought still makes me so shocked and depressed, that I cry like a newborn baby!

I appologise for disturbing You guys with such a disasterous news, but I just had to tell, to shout it out to someone, wether they will care or not!!!

Thumbs up

Shit brah, that sucks.
I'm no good at this,but hope you feel better soon,and deal with it. ahem.

Thumbs up

Oof. that's rough. hang in there.

Thumbs up

@caccio I'm really sorry to hear this. I'm definitely familiar enough with eye surgery to know how horrible it is to go through, and something so drastic is particularly nasty, especially with all the losses of vision you've already experienced, really sorry this is happening and you certainly have my sympathy.

However if you don't mind there is one thing you said in your above post which I do not think is true:

Caccio wrote:

Even thinking of wearing a mere,  lifeless ball over my neck, so without even a sense of a single one existing eyeball, like some stuffed, glass- or plastic-eyed dummy...

"Dummy" you certainly are not, anyone who reads your writing can know that, and whatever material your eyeballs are made of makes no difference (there are plenty of people with fully working eyeballs who are less than well endowed in the brain department)..
Even on an aesthetic level, these days artificial  eyes are not that grim a proposition.

mrs. Dark had retinal Blastoma as a child, and hasn't  biological eyes since the age of two. This is bad since she manifestly cannot see anything but it has little affect on her physical appearance, indeed she looks probably better than I do given my single sunken eye socket and clouded eye and has regularly done professional stage performances where she's been complemented on her appearance, she's also  far from being a dummy brain wise either.

so, while I definitely sympathise with the actual procedure and general horribleness it involves, you don't have to think of wearing artificial eyes as any sort of stigmain and of itself above and beyond being blind anyway.

As I said, "dummy" you certainly are not and that has bugger all to do  with what material your eyeballs are made of, it's the brain behind them that counts.

Thumbs up

Your are not a dumb person man. I know I'm loosing my vision its just a matter of when it finely all goes away. Hang in there and god bless.

Thumbs up

I think he was referring to "dummy" as in a doll.  Like a ventriloquist dummy for example.

Caccio, I'm sorry to hear about this situation.  sad

Thumbs up

7 (edited by Caccio72 2017-07-16 11:49:53)

Thanks for all the moral support guys, and it seems I used an inaccurate expression, (again), which made Dark misunderstand that certain part of my post:
Namely, it is by far not the artificial eye which I fear, nor my physical appearence, after all I wear a plastic eye-prothesis instead of my left eye, since my early childhood even, and my facial symetry also sucks because of it, (despite that prothesys, my face still didn't manage to develop proportionally), it's the feeling of wearing a lifeless puppet-head instead of my own, )"puppet was the word I meant to use instead of "dummy"), what I fear the most.
I did have a seeing eye, and now I still have that eye as an organ, which, even without its primary function, (so without seeing anymore),, is still there, I feel it as a living part of my body, and it still signalizes me that there still is...something...in that eyehole, its a living organ, with which I can still sense, registrate at least darkness, it still helps me when moving my head into directions, so it is still a source of orientation...but if it will become just a lifeless piece of glass or plastic, like my other eye is...with that one I can't "see", actually sense even darkness, there is nothing there, just lifeless skin and plastic, and that's how my whole head will feel after losing my 2nd eyeball too...

Don't know if I managed to express myself better this time...

Thumbs up

Ah fuck this, excuse my french at that point. I am so sorry to hear that man, hang in there, you will do it.
Greetings moritz.

Thumbs up

Caccio72,
I feel sad that you probably will have to go through with that ordeal.
If you think positively about the future, you could be a candidate for electronic eyes where they replace your eyes with electronic ones that are connected to chips the put in your brain that stimulate your visual cortex.

Thumbs up

I've always felt allot worse for people that went nearly or totally blind in later life, especially when allot of surgery was involved,
I lost all of my site when I was about 5 I think, before that one eye was way worse than the other. I also had a ton of surgeries, eye patches, medications with powerful side effects, and painful checkups.
But I don't remember any of it, thankfully.
I'm curious, what did the nurse do to mess up your first eye, and why was she doing anything near there anyway?


This puppet feeling you describe is disturbing, I've never heard any of my friends, of which I have many, that have had prosthetic eyes since birth say this, but of course they wouldn't remember either.
When you say puppet do you mean how you believe you look, in your mind, to other people? or is it an actual feeling of the area being dead, because I've heard of that happening and I wouldn't want to go through something so traumatic.
I've heard of phantom pain and such, but I'd imagine that the feeling of a missing body part with such a direct connection to the brain for a while right after surgery would be extremely upsetting, and I'm sorry to hear that you are going through this.


Even if it is just in your mind, I'd imagine that it would be very depressing and pervasive in every day life, at least for a while.
So I hope you have people that can help you with that, councilors and psychologists, as well as friends and family, because it will help to make that feeling go away after a while much faster than it would if you have to deal with it all on your own.
They can give you medicine that may be able to help you with your depression, like they did for me. It's much better than it used to be a couple of decades ago, and has barely any side effects unless you need something super strong.
If you are religious, then I suggest you also take comfort in worship and the church community, which really seems to help in times of great need.

Thumbs up

11 (edited by Caccio72 2017-07-16 23:12:11)

I actually fear neither the physical pain, nor the surgery process, after all I have been through quite many of those by now.
What I fear is its outcome.
For those, who have got their other, second eyeball, totally regardless if sighted or not, (and the vast majority of people do), the situation is different, they will still have one existing eye left, even if it is not functioning anymore.
If only I would have my other eyeball, like the most people do, (again, regardless if sighted or not), I would have accepted the removal surgery right away, to avoid the risks of further transmissions...but I have none, I have no other, such a "reserve" remaining eyeball left!
(sorry if I have used the expression "reserve" inaccurately again(
It is pretty hard to explain it: with my right, still existing eyeball I can still sense, register, recognize, so we can say "see" the darkness around me, as if you would have your eyes blindfolded, but knowing they are still there...with my left one I sense, "see" nothing at all, not even darkness, it is just a combination of lifeless skin, flesh, and plastic...thinking of my right eye becoming this same lifeless combination, leaving me without capable even to sense darkness around me...now that is what I fear like hell!
This was about the mentioned "puppet-feeling I fear so much, and which you asked me about.

Now about the case right after my birth:
The hospital where I was born, (back in former Yugoslavia), persistently claimed that I was already born without my left eye.
However, we had a doctor family-friend, who started to doubt in that statement, and advised us to visit a famous, leading eye-specialist professor in Germany, )West Germany back then of course), to ask for his more professional diagnosis and oppinion.
We did that, (with some financial support of a certain humane relative of ours), and the german professor stated, that considering my (back then) still existing eye-nerves, or sight-nerves, (sorry for the inaccurate translation), I MUST have had an existing eyeball by my birth too!
This can only mean, that I must have lost my left eye due careless handling, most likely of some nurse, right after the moment of my birth.
Normally the hospital never admitted this openly, and we wanted to avoid bringing the case before the court, meaning officially sueing the hospital of my home town, the town I was living in for almost 30 years, after all we did need their cooperation in many cases in the past, so "messing" with them would have certainly not been to our benefit.
Plus, the german eye-expert professor also advised us, actually insisted to "make no hussle" out of the matter, he obviously didn't want to be involved into an eventual conflict, law-process with a possible scandal, with/against a foreign, yugoslav hospital even, that would definitely hurt his fame and reputation I guess..
So we quietly accepted the "official diagnosis" about me being born without left eyeball, paid for a plastic eye-prothesys to replace it with, and lived on with it...all the way until a large, malicious tumor was discovered in my other, so far healthy and functioning eye...the rest you know.

Thumbs up +1

sad
I did not have vision but it is verry sad.

Thumbs up

13 (edited by Caccio72 2017-07-17 00:05:49)

Well this is something I always wanted to ask those of You, who are without both vision and existing eyeballs, so those wearing prothesys in both of their eyeholes: Do you "see", meaning sense at least the darkness around you, like in the case of my right, still existing eyeball, or you don't sense even darkness around you, like in the case of my left, plastic-prothesys eye?
Dark, could you please ask your wife about this matter?

)the answer to this question is what I am afraid of so much, but unfortunately the time has come for me to ask it, and face the result, which will be identical with the outcome of my future, inevitable eyeball-removal surgery)

Thumbs up

[wow]! This is a coincidence. I recently started reading TFIOS, also known as the Fault in Our Stars by John Green. Isaac had also dealt with having to lose another eyeball and in this case, becoming totally blind.
Are you currently going under any chemo, radiation, or immunotherapy to keep your tumours in check?

Thumbs up

15 (edited by Caccio72 2017-07-17 07:27:15)

Of course I have to undergo several regular controls and examinations, (3 or 4 times in a year, it depends), examinations like the so called "ultrasound" method, and of course roentgen rays, in order to check for eventual further malicious transmissions of the tumor...luckily none was discovered so far!

Btw those are no therapies, therapies would be necessary only in case a transmission appears, those are a little annoying, but still mere ordinary control-examinations.

Thumbs up

I'm really sorry to hear this. I hope you manage to have a happy life, even without your eyes. At least you'll be able to make some (not so) good jokes, like telling people your real eyes were eaten by spiders, or asking them for help because you suddenly can't feel your eyes anymore. Yes, I have a bad sense of humor. Best of luck, I hope it all goes well.

Thumbs up

hi Caccio,

It seems like you and I have a lot in common,  not only in the taste of audio games but our age and we both started life with sight.

I have got RP and at this moment I can  only determine light and dark.

people who have been blind from birth in my experience don't suffer as much with the psychological effects, like in my case manic depression.

Also I have found people who are born blind have much more fulfilled lives, what I mean by this is, they are much more independent, have full time jobs etc.

I am now 44 years old and cannot even make it to the local shops on my own even though its only 100 yards away,  I can't have mobility training at the moment because my anxiety levels will not permit it..

people who I talk to smile when I refer back to my sighted life like I have been born twice, but it seems  likre its 2 different life spans.

I was 32 by the time I needed a screen reader, and the sight loss was gradual, on the plus side I nanaged to see my 2 sons being born and could drive and managed to see a bit of the world, but in some respects I wish I was just born blind because I would have been a much happier person and may not have contracted mental illness.

please try not to dwell on it to much mate or you could end up with far more problems than just blindness, I always used to think why me but there are far more worse people of than us, that's the only crumb of hope I can give you to cling onto.

Thumbs up +1

18 (edited by Caccio72 2017-07-17 20:24:11)

Many thanks for your empathy and moral support Shrike!

You see, it's not blindness itself which makes me depressed, I already learned, actually forced myself to accept it, and "cope with it" in a way.
What I fear is far worse, far more scaring to me than blindness itself:
Namely, since I totally lost my remaining eyesight, I thought, actually hoped, that "blindness" itself means, equals "seeing", sensing, experiencing total darkness all around me, which is how I "sense" with my still existing eyeball now.
And I was convinced, that it was the worst possible thing what could have happened to me.
However, I am starting to realize, especially after this shocking news I posted here, that there is a far worse alternative even than blindness, when I will not be able to "sense" even the darkness around myself, nothing more at all, just like with my left eye, with a "lifeless" plastic prothesys in its hole.
Sensing nothing at all anymore, instead of sensing at least the eternal darkness...this sounds much more scary to me!
And this so scary thing is exactly what WILL, inevitably, happen to me sooner or later! (I can just hope for "later")

Thumbs up

That sounds like a birth defect Catchio, the fact that you got a cancer later on makes me think that your mother may have been exposed to a toxin of some kind when she was pregnant with you.
If she wasn't drinking, their are still allot of other things that could cause it.
Pesticide spraying, AKA, crop dusting can cause harmful chemicals to get into sources of drinking water, but even in the air over a few months it can be bad, particularly for a fetus.
Especially with the kind of crap being used back then.
Also industrial runoff can get into groundwater, if it isn't just straight up dumped in a river that is, and though it's less likely, that was the cold war right? who knows what kind of testing was going on or where, most of it was top secret and the governments never cared what happened to their own people, there was plenty of nerve gas being dumped willy nilly.
Also their is radioactive waste, but that is even more unlikely, who knows though with Russia dumping things where ever the hell they wanted.
It could also be a genetic problem that your family has, but you would probably know about that before. Either way, those can manifest differently for different people, so while your grandfather may have a hearing problem since childhood for instance, you would have an eye problem, but it would be do to the same issue.


Yeah I get what you mean now with the puppet thing, I've never had an issue with that because I went blind so early, but it sounds very upsetting.
Look on the bright side though, you will be able to remember the colors, I still do, and I lost my sight when I was only five or so.
So when you read a book or a poem, or someone tells you that something is a certain color, you will be able to remember what that is like and understand.
You will also probably remember what most objects look like, even if it's just in general.
Some people will never know what that's like, at least you do though. :-)

Thumbs up +1

20 (edited by Caccio72 2017-07-17 21:05:38)

Yes, the colors I can still remember, and hopefully will remember them till the end of my life...actually dreams are the most pleasent part of my life now, since in my dreams I can always still see, despite being subsequently aware of my vision loss, sometimes I dream of seeing again, while knowing what happened to me, and I dream it often even round 10 times during a single night, those dreams mostly look so realistic, that I almost always believe, that by some wonder my vision has returned, and feel so happy...you can imagine, how depressing my final wakeup feels after such dreams...it's always the worst, most painful part, realizing the true reality, meaning my total blindness, each single morning, over and over again!

As for the birth-defect theory, some doctors are still claiming it too, but my mother definitely keeps denying it, and after she told me the the true story of my birth, the one I already told here in this forum-thread, the one about carelessness of some hospital employee, probably a nurse, which was approved by that certain west-german eye-specialist professor, you know...I maximally trust her, and don't believe in the "birth-defect" theory at all, especially since in such cases, usually some other physical, or mental defects manifest by birth too, along with the one in question, (this was told by more doctors-specialists to us so far), but in my case no other defect occured at all!

However, this doesn't exclude, that one of the other events you mentioned, still affected my birth-conditions, except the ones involving my mom's lifestyle, who wasn't drinking, and had stopped smoking 10 years before my birth.

Thumbs up

Well for me having been born premature with all the stuff that went on in the 80s, my eye condition was because of to much oxygen aparently its probably more complex than I am putting it.
But if I was born today what happened to me would not happen well a lesser chance but I was born at a time when lasers didn't exist.
I've never had to loose eyes but I do know people that have, your life is different that's for sure.
For me I still have eyes though they do not work.
However I can still see light and shaddow and for me thats rather good.
But if I ever lost light completely I don't know, true heat could be light but when you know there are variations of it well.
On the other hand as I have grown older at the age of 20, My eyes are sensitive to light, when I was small I had this stuff all the time flashes, headakes, and the like.
Now there are situations, ie its to dark or to much sun or a fluro light or something I just have to wear glasses.
Or take tablets for alergies and pain killers.
And even with this going on there are situations where I really need to just leave a room with to much light in it.
On the other side I have to wear good glasses most of the time and maybe hats sometimes inside buildings.
Sadly Once I had to be in a place for a while that had no curtains its my uncle's place and unless its winter or raining I will need glasses all the time.
Even with the best eyeware and the right lenses polarised etc, they can get uncomfortable.
If you can afford it getting custom fitted glasses helps a lot.
But they cost 100 bucks at least, having had 20 dollar glasses though and worse when they broke 7 dollar inported bits of fake ones without protection at all, the custom fit does help.
It also helps that I live at the end of a house that doesn't get all that much sun in it all day so its not a problem.
But there are times that if I could usually in summer or when in a drapeless room, if I could pull my eyes out and put them away or put filters on or something that is stronger than standard glasses I'd probably do that instead.
At any rate, going blind is not the worst of it, its being in a situation where your blindness is an automatic limiter.
My grandpa has had heart trouble most of his life, and about a month ago he fell on the floor.
He is now noninteractive and weak and its been confirmed his heart muscle is gone.
He has a few months to live, big deal.
But what is a big deal I have found is the fact that while everyone else rushes round, while I have actually visited him once for all the good that that was there is little I can actually do to help the situation.
Bar take some of the preasure off the family by helping around the house doing chores, but I am 99.9% out of all decisions otherwise.

Thumbs up

Hi @Caccio72,

My name is Noah Carver. I'm 13 years old, and am going into eighth grade. I've always been blind, due to a genetic condition known as Leber's Congenital Amaurosis. This condition' has left me totally blind, save for light perception.

I can totally see where you are coming from; going blind in this way. If you want to talk, please don't hesitate to PM me on the forum. Good luck!

Noah

Thumbs up

@Caccio,  I understand what you mean about losing a part of yourself now, isnce it seemed from your first post you were using the English (and to an extent American), expression where "dummy" is equated with idiocy.

To answer your question Since Mrs. Dark had canser at the age of two she doesn't have any clear memories of having vision. Indeed I am fairly convinced that like me she is synaesthesic and so still experiences colours, just from her descriptions of the way she senses things, but it is difficult to say whether she "literally sees darkness" or not as you describe.

I'll say for me with the eyeball I lost to a Haemorrhage at the age of 7 it is mostly as if the eye is not there. I can feel that it is there, but if I try to see out of it it is like trying to see out of my finger. It definitely still feels, indeed at one stage I tried to get a prosthetic  to wear over the eyball so that I would no longer have a constantly sunken in, perminantly closed eyeball on one side of my face, but wearing the shell was too sensitive. I might even consider having this eyeball removed accept that it my family don't have a good record with surgery, ---- hell my own lack of sight is very much due to medical bad luck as well.

Either way I'm really sorry your having to go through the surgery and you can recover easily.

On the question of depression, I wouldn't say there is a clear divide, hell I don't know exactly whether you would class me as "blind from birth" since while I was born with considerably more vision I have now I certainly have used the vision I have a lot and dread the thought  ever losing it. I'll certainly say I am not a stranger to mental illness and depression either, and whichever  you cut it being blind for whatever reason certainly is! more stressful on a basic level of logic just from having to memorize details, check by touch first where objects are etc, quite aside from occasional arse holes (like the chap the other day at the supermarket who told me to go away since he was too busy to actually help me get stuff).

Thumbs up

24 (edited by TJT1234 2017-07-19 09:19:18)

Shrike, I disagree with what you have said when you describe people who have been blind since birth as "more fulfilled" and "more independent" in the sense that they are able to have a full-time job and travel around by themselves. The reason that I disagree with you is because I do not put these things down to having been blind since birth. When blind people have good opportunities, whether they are congenitally or adventitiously blind, they are able to do these things and much more. It is perfectly possible--and unfortunately quite common--for a person who is congenitally blind to be unemployed and to be afraid or incapable of travelling around independently; and it is also perfectly possible for a person who is adventitiously blind to be employed in a well-paying job and to be able to travel around with confidence and ease.

The Australian Broadcasting Corporation aired a series on national television where marginalised groups in society spoke openly about their challenges. One episode of the program featured "blind people". Caccio72, if you listen to this program, you will see that each person's experience of blindness and what they see is different. Also, you shouldn't worry about what you will see because you cannot be certain of exactly what you will be able to see. I know that one panellist on this program experienced vision loss in adulthood and is employed, so this is not something to worry about. The link to the program is here: http://iview.abc.net.au/programs/you-ca … 617H001S00 This episode has audio description.

Thumbs up

hi TJ,

my comments regarding people who were blind from birth was based on the people I know as friends, so although its quite a few people I guess I am still generalising.

but everyone of them agrees with me in the sense that it must be much more traumatic trying to adjust to a completely different world, 1 of my friends lives in Germany and regulary travels the world litrally on his own which I find truly amazing.

I on the other hand am petrified when I go out alone, up to a point where I developed a kind of irritable bowel syndrome, where I have soiled myself due to stress in getting lost and needed the toilet so bad.

so like I said previously, all the blind people I know from birth or went blind at a very early age certainly seem to manage far better in general terms.

Thumbs up