Asking a Question

[kittytech]

I'm going to ask you all a question. It's one that I know could be
rather controversial, and people really have some strong opinions one
way or another. But, I'd still like some thoughts. First, the question,
then an explanation.

When does a little bit of vision beyond light perception turn into
trouble if it's causing physical pain?

I've tweeted about light, and I've probably written about it here too,
especially over the last several months. I've had light-sensitivity
problems since I was in high school. At the time, the quack of an eye
doctor that I went to told me that I had little to no pigment in my
eyes, so the light came through more and that's why I was uncomfortable.
About a year after that statement was made I had a cornea transplant.
Without it I could have lost my right eye. After the transplant, I had
major issues with light, and that was because the graft was trying to
reject, and the cornea specialist that I was seeing at the time did an
amazing job of trying to reverse the rejection.

I've continued to have problems with light since then, and lately it's
getting to the point where I just can't even find sun glasses dark
enough to make a difference. A couple of years ago I got some
prescription glasses that were supposed to go from light to dark
depending on my environment, and they were absolutely useless.

Over the weekend I had a headache that just wouldn't go away. The cause
of the headache was from sleeping wrong, and that happens sometimes. The
thing is though, for almost the entire day on Saturday, I tried pretty
much everything to get the headache to go away, and it wasn't until I
thought of using a sleep shade that completely blocked out all light
that the headache finally went away completely. Even when I don't have
an actual headache, I've got pain. The lights in my cubicle here at work
have been removed, and I have to keep my monitor off pretty much
constantly now, and yet it's still not enough.

People have always told me that my eyes are a very unique shade of blue,
and I've gotten lots of compliments on the color over the years. But,
lately I'm starting to wonder if it's time to start considering other
options. I just don't know what the right thing is in this case. Also, I
know there are so many people who would give anything to have even the
little bit that I have now. I rarely ever have any lights on at all when
I'm home, and I keep my drapes closed pretty much all the time. It's
just not enough. I know that in the end, anything I do has to be my
decision, but I'm curious to know what others have to say. Now though,
I've got one more hour of work, so it's time to get back to it.

Comments

[shazza59.livejournal.com]

I think if the pain is getting worse, and you're to the point where even on a nice sunny day you can't go out and enjoy the warmth, it is time to think of other options. Especially if there's a chance the pain will only increase. I stil have my eyes with no light perception or vision of any kind, and I want to hang onto them because they are mine, they are pretty, so people say, and I'm rather fond of them. But if I started having pain, I'd reconsiderin a real hurry.

Cornias.

[alexbanwell.livejournal.com]

Hi Caroline.

I found it very interesting to read your post today, as I also had a cornia transplant when I was about 7 years old. In my case, my body rejected the new cornia, and I almost died in the process.

Before the operation, I had a little sight in both eyes. They operated on my right eye, which had the least amount of sight, and for a while, I became more dependant on my right eye than on the left. The improvement was amazing! However, once my body rejected the cornia, there was nothing they could do, and now I am totally blind in the right eye, but still have some sight in the left.

My situation is different to yours in that, although I cannot see much, I do depend on the little sight I have, and can't imagine living without it. But I am not in any pain.

I used to suffer from migranes which centred in the right eye, and at their worst, I used to wish someone would come and wrip the eye out just so I wouldn't feel the pain anymore.

If it were only light and dark I could see, and if I were in the kind of pain you have described, I think I would definitely look in to other options. By the sounds of things, you aren't able to benefit from your light perception because of the pain it causes, so it is more of a hindrance to you than a help.

I don't suppose any of this rambling actually answers your question, but I just thought you may find it interesting.

If I were offered another operation, I would refuse it, even if they said it was vertually certain to work, because the sight I have left is too important for me to lose, and I know if I lost it I'd have to re-learn everything. It is my colour vision which I find most useful, and from what I've read, I'm assuming you can't distinguish colour.

Well, take care, and I hope my ramblings will a least be something interesting to read.

Re: Cornias.

[kittytech.livejournal.com]

Actually, I do have some color vision, although certain colors are hard for me to distinguish. I can also see crosswalk lines when I'm crossing streets, and can usually avoid running into people or objects. That's another thing that really gets me because I know I'd miss what little I've got, even if it's not all that much in the scheme of things.

You Have To Do What's Right For You.

[lulu-bear66.livejournal.com]

Hi, Caroline. My husband has a younger brother. He has a condition, I don't know exactly what, but his eyes were causing him constant pain. It affected his life every single day. He couldn't enjoy anything particularly because he was always in pain. That is no way to live. He had the eyes removed, and now has arteficial ones, and he says it's the best decision he ever made. He is now completely pain free, and can enjoy his days, not dread them.

In my view, having beautiful eyes isn't much good to you if they are making your life uncomfortable. I think having to have your drapes closed, keep all lights off, try to find glasses you can wear to keep out bright light, well, I'd find it hard. In the end, you need to do what will give you the best quality of life. It doesn't matter what anyone else says or thinks. Controvertial it may well be, but you have to live in your own body, no one else does. You must do what is right for you.

A Difficult Question

[rachaelwarke.livejournal.com]

I found this very interesting, and at the same time, very familiar. Sarah has gone through this same struggle for most of her life. It is hard for me to understand, since I have no light perception, and know that she, and you, could get along fine without it. It's hard to understand why you would willingly endure pain for such a little gain. But the bottom line is just that! I don't understand. Not that I think either of you is wrong or crazy, because I'm sure that the loss of a body part has to be traumatic, even if it is painful. And being the critters that we are, hard-wired to gain most of our knowledge of the world through vision, contemplating losing even the tiny bit you have must be painful indeed. But I wonder if it is as painful to contemplate as that headache was to endure. Neither choice is a happy one. Know that you have many friends who will support you, no matter what your decision turns out to be. Praying for strength for you!

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