I currently live with my wife, two children and parents in-law on the lovely Gold Coast in Queensland Australia. I have a good job in software development, and I enjoy learning about science and spending time with my family and pets. In all I am a rather happy and lucky person. But, it so happens that I am totally blind. I cannot sense any visual information at all from the outside world. It has not always been this way though, in deed I have enjoyed the wonderful experience of vision (though perhaps not as clearly as others) for at least 10 years of my childhood. Although I do wish to cover some detail about my loss of vision, the main purpose of this writing is to note just exactly what role vision has played in my life, and how the perception of vision still remains vividly a major part of my life today. And, as I have a love of all things scientific, I also wish to point out any experiences that may be scientifically abnormal or strange.
A part from being born with major digestive problems (specifically esophageal Atresia plus a tracheo-esophageal fistula), extra ribs, and a right-sided aorta, I also was born with no right eye, and my left eye was not properly formed. Specifically, the left eye was undersized, had no lens, no iris, and an opaque cornea. Doctors still don't really know what caused all of the problems I was born with. certainly there is no one name that can fit all the symptoms. A chromosome deficiency was at one point thought to be a possibility, but a test at 1 year and then a recent test at 26 years (when we were expecting our first child) has dis proven this. However, both my family and I have found it much easier to just get on with life and enjoy it rather than to ask why.
When someone is born with out an eye, it is usually necessary to get a prosthetic eye to replace it. Of course the social and image issues of walking around with out an eye are quite clear, but another reason is for optimum growth. With out an eye, it is possible for the bones around the eye socket to slowly deform over time as there is nothing to hold them up. For these reasons I received my first prosthetic eye with in months of my birth. Some doctors later on have asked how much work had to be done to prepare the eye socket for the prosthesis. The truth is none. My right eye socket has appropriate upper and lower eye lids, and the orbit (hole) is quite the right size and shape it could be. Its just there is nothing inside. Thankfully though the inside (including the back) seems to be covered in what is rather like the inside of your cheeks. No dangling optic nerve... no bits of brain exposed... just smooth puffy skin. To this day I do not know how much of the optic nerve did not grow -- is there still some behind the socket? All I know is that its not exposed to the outside.
Although I have not yet talked about exactly what I could see in my left eye, in short for the 10 or so years I did have some vision, it was enough for me to walk around familiar locations, read very large print, play certain computer games, and perceive colors. But, all this was of course only in my left eye. As I had no right eye, my brain did not receive any visual information from the right side, which of course also meant that I did not have stereo vision. Apparently a disadvantage of no stereo vision is that there is no depth perception. Although I think I understand this in theory (the idea that the brain can compare data from two separate sources) I still myself did experience some depth perception, at least as far as being able to judge depth based on the size of an object in comparison to its background, and also by how the ratio and angle of the object to its background changed as I moved my head. However I'm sure if I ever did gain full stereo vision I would be much surprised and confused at what real depth perception really looks like. Of course another thing I would have missed out on (though probably not that important to real life) was the ability of gaining double vision by crossing my eyes. Though, I have noticed that I can actually emulate this with touch, by crossing my index and middle fingers on the same hand and then touching the edge of an object. Doing this actually feels like there are two edges when there is only one.
Of course the big question always comes up when talking about the lack of one eye: "What do you see on the right then? black?" Well, in my case, the answer is: nothing. And by nothing I really mean nothing. Not black, there really is absolutely no perception or room for vision on that side. Perhaps think about it if I asked you: "What do you see out of your nose?" You know the answer really is nothing.
As I mentioned earlier, my left eye did exist, but was far from complete. For the first 4 years of my life the most significant deficiency of my eye was the fact that my cornea (the outer-most membrane over the pupil) was rather opaque. This can perhaps be thought of as looking through a frosted window. I could certainly see some colors (as I do have quite colorful memories of this time in my life) though I could not really make out shapes. Its very clear that I was aware of color, as one of my favorite pastimes as a toddler was to slide on my back through the house until I got to our shower, which had a bright green shower curtain, and then play with it. I also loved waving my blue dummy in front of my eye for long periods of time. And perhaps yet another situation was to do with assigning meaning from color. As my Dad sometimes would ware a green jumper, I tended to associate green with Dad, as that is how I could see him. Hence when I came across a bright green fence in a farm toy set we had, I would always call it "green daddy".
Around the age of four, it seemed as though my vision was starting to become a little clearer. In deed it was, but at a cost. My ophthalmologist noticed that a bubble was forming on my cornea, which had the affect of thinning it out, thus making it less opaque. However, it was quite clear that eventually the bubble would burst, and irreversibly damage my eye. To try and fix the problem, I underwent a cornea graft operation to cut out the bubbled patch of cornea, and replace it with another piece of cornea. However this did not really work and at that point my eye certainly did not look too healthy at all. However, there was one more solution to try, and that was a complete cornea transplant.
On the 25th of April 1988, I was apparently the youngest child in Australia (then 4 and a half) to undergo this type of operation. My old and damaged cornea was taken off, and a donor cornea was put in place. With any transplant there is a very high chance of rejection. In fact the doctors were so unsure of the success that they thought it may only last twelve months. To decrease the possibility of rejection, I was placed on a large amount of steroids, in order to compromise my immune system, and therefore lessen the chance of my body fighting the foreign tissue. Of course due to the steroid tablets, I became quite chubby and did not gain much height. However, this was a very small price to pay for the 10 years of stable vision I gained from the transplant. My vision improved significantly because of the transplant, in deed straight after the operation I was able to see patterns on the floor in the hospital ward, see fish in a fish tank. In fact my opthomologist tells me that he remembers me tracing my finger around a brick on a wall, looking at it very intensely. Apparently I asked my brother: "What's that? " very amazed at the new stimuli to my eye. My brother replied: "Its a rectangle silly!".
With my new found vision, I quickly made very good use of it. I learned to read large print (which was useful for reading the time, or large labels and so forth). I learned to write, though only in printed (or dis-joined joined writing), and obviously I used it to navigate my way around obstacles and such. Although I did use my vision for some reading and writing, 90% of my education was done using Braille or computing with speech. My love of color stayed with me, though my absolutely favorite color was purple.
As I had no lens, it was impossible for my vision to focus. In fact the very concept of focus was, and still is rather foreign to me. I liked to think that my vision in comparison to others' was rather like a camera zoomed out as far as it can go (or perhaps further). In that, what I saw did not seem blurry (in deed it was a lot clearer than what it was before my transplant), but everything seemed much smaller than how others described them. For instance looking at a book with small print. The print did not seem blurry to me, simply just too small. I could not understand (even if it was made clearer) how you could fit the extra information in such a small space. Similar with looking at something far away, it was just too small to see. For this at least I made heavy use of a monocular (like binoculars but only one of the sides). This allowed me to see things up closer, though did not help too much with small print.
Recognizing people was all about their clothes, sounds or hair color, as I did not have enough vision to recognize faces. Even when I did get close enough to someone I'm not that sure I had that "magic" facial recognition gift that others tend to have. Recognizing people in the way that I did was mostly accurate, though I did get caught out once or twice. for example we were staying at a holiday house with close friends when I was about seven, and I walked up to mum and asked her if I could have something to eat. The reply was "maybe" but... the voice was not my mothers! it was one of our friends who happened to have roughly the same hair color and length as my mother. Although the mistake was not harmfull at all, it certainly gave me quite a fright.
A part from missing a lens, my left eye also had no iris either. From another persons' point of view, this meant I had no eye color, as it is the iris that is the blue or green or brown part of your eye. However, the iris has importance for the eye in limiting light going to the back of the eye. As the environment gets darker, the iris opens to let in more light. As I did not have an iris, my eye would have always let in maximum light all the time. Of course I do not know what its like to have an iris, but I understand usually one of the disadvantages to not having one is photo phobia, where bright light such as sun light is very uncomfortable. I did not really find sun light to be that problematic. In fact if I was to ware sun glasses in the sun, I found it harder as my vision became too dark. After having done some reading recently, I now think I understand why I was different. As the lens focuses light, it also increases the power of the light going to the retina. As I did not have a lens, this meant that the light (iris or no iris) was already quite less powerful than it would have been.
I have also later found out that the lack of a lens can have dangerous affects on the rest of your eye. The lens is very good at preventing ultra violet rays from reaching the retina, plus the lack of a lens can also contribute to the chance of retina detachments. If I had known this I may not have done some of the things that I constantly did as a child.
I absolutely loved looking at light. This is quite common in vision impaired children as it is an easy to get stimulation. As a very young child I used to wave my hand in front of a bit of sun light coming in the window, making it flash on and off. I used to constantly look straight at lights for long periods of time. But some of the more questionable things I did were things like: Shining one of those video machine timer setting bar code lasers directly in to my eye at point blank. Looking directly at the sun. Looking directly at those black lights (ultra violet blue lights) they have at discos. Looking at those lovely violet arc welder flames (from a long way away of course). And I'm sure there were other things.
Another thing I tended to do when I was really board, was to place my finger on the outside of my left eye, on the side of my eye lid, but pressing up against the side of the eye ball, and leave it there for many seconds. At first I would notice that my vision would become brighter and brighter. It would then start becoming rather distorted and blurry, still remaining very bright. After this, the image would tend to loose all the red and green, and just leave a blue image in its place. eventually if I waited long enough, the image would eventually fade to black. If I took my finger away, my vision would return completely with in about a second. I'm not exactly sure what was going on with my vision when I did that, but I can guess it may have had something to do with my retina, and it probably was not too good at all.
One very peculiar experience I had with my vision about a year before I lost it fully happened while my family and I were on a holiday. I was in the middle of a relaxing spa bath, when I suddenly noticed everything had a rather strange pink tinge to it. This was odd, so I got out of the spa, dried off and got dressed, and went and asked mum if the sky today was oddly pinkish. She said no, as I had expected, and I continued on with my day ignoring it. However that night I was playing around in the bathroom, and I switched off the light with the door closed for a few seconds, and after I turned it back on, I noticed that the pink tinge was back. I did this again, but this time for a slightly longer time. After turning on the light the pink tinge was even stronger. I tried this this time for a whole minute, and low and behold when I turned on the light, it was almost like looking through pink cellophane. This went on all that night, and even when I woke in the morning things still had this pink tinge. However it seemed to go away further in to that morning, and never returned after that. I have no idea what was going on.
Towards the end of my childhood and going in to early adolescents, my cornea started becoming slightly opaque again. Nothing too drastic, but both eye tests, and my own visual experience was showing that things were getting a little harder to see. It was eventually decided that we should try to get another cornea transplant. This cornea had lasted a wonderful 10 years, but it was probably coming to an end. There was also the possibility (and this was the reason why I was 100% for the transplant) was that they might be able to provide me with a lens as well. I knew that this was major major cool. It would provide me the ability to focus, and allow me to gain probably similar vision to others (or so I thought).
After visiting with a new doctor, and finding a donor cornea, I underwent the operation. The doctor had told me there was a 70% chance of success, in my teenage mind that equated to 100% chance of course. I was rather excited (and a little nervous) before the operation. I spent the previous evening happily with my brother doing audio editing on the computer working on a project, and I went to sleep on the floor in his room as we had been talking about what was to come tomorrow. I remember the preparations at the hospital, and going off to theater. I was happy and hopeful right to the end. However, things turned out not to be very successful at all. Apparently as soon as the doctor had lifted off the old cornea, my retina started to come away from the back of my eye, which also caused bleeding behind the retina. The doctors tried their best to stop the bleeding and replace the retina, but in the end they just placed the new cornea on top and hoped for the best.
Waking from the operation, I do faintly remember mum saying something along the lines of "The doctor said there was some bleeding, so is not sure really how much sight you'll really have left now". As what usually happens after a long operation, I most likely drifted back off to sleep again. Oddly enough I think I in deed did commit what she had said to memory, but I'm not sure just how much of my brain really processed it. After I had fully woken up, we headed home in the car. I felt rather ill and had a terrible head ache. Although I had a patch over my eye (which I was well aware of), I remember touching the car window "looking out of it" and musing upon the fact I had no idea if it was in fact day or night. Once we got home, we walked to my room and I went straight to bed, and although I was in a rather dazed and somber mood, I think I had a pretty good night sleep.
The next morning I woke feeling quite okay, except for the head ache of course which in fact stayed with me for at least a month. I got dressed and had breakfast, managing all tasks surprisingly well even though I had a patch over my eye. Before we left again for the hospital I went to my room to look for an eye chart I had created and printed before the operation. I looked on my cupboard door where I had stuck it, but it wasn't there. I called mum in and asked where it had gone. She told me that dad had moved it. I asked why and mum again like back in the hospital told me that there was problems with the operation and that no one was sure if I'd have any sight left at all.Hearing this was obviously a major shock to me again, but strangely my reaction was to simply say "Say sorry!" (for moving the chart). I did not cry, I did not fall in a heap, I simply focused on the trivial fact of my stuff being moved. Another reason perhaps why I did not fully process what mum was saying, was because at that point in time, from my vantage point, I could see her. I was not blind, I could see mum standing right there in front of me. Of course now I know that was impossible as I was wearing a patch over my eye, plus as we found out later my sight had completely gone.
That morning we drove back to the hospital so that the doctor could remove the patch, and test what vision I had left if any. The removal of the patch is still quite clear in my mind. Its a funny feeling to feel it being removed, yet for your vision not to change. At first I saw absolutely nothing, and I'm sure everybody realized this from my expression and movements. Though after a little while I could see a faint bit of light from my left side where I had known a window to be and quite calmly and almost excitedly pointed this out as if to say that there was no problem, I could still see things. As I got used to the light, and after several tests with the doctor it was clear that in reality the only vision I had left was a few degrees of pink-tinged vision on the very left, and a very minute bit of light perception (only from a torch or the sun) over the rest of my visual field. The doctor did mention there was a lot of blood there still and suggested perhaps the red/pink was because of that.
Over the following several months, the little bit of rather unusable vision I was left with, eventually faded away to nothing. The head aches remained for at least a month, and with that a general feeling of unwellness. I was extremely tired in the first few weeks, constantly sleeping when ever I could. I would get up for breakfast, lunch and dinner, but in between I preferred to sleep. This may have been for a few reasons. The first was probably depression, though I never would have admitted that back then, in deed I really did feel as though everything was okay. The second was lack of light perception, so I could never see when it got light or dark outside. Even if I did try and stay awake through out the day many times I would find myself sitting on the couch after lunch, and then suddenly mum telling me its dinner time. This sometimes would startle me visually as I'd be sitting there picturing what was out the window, and then someone would make some remark about it being ark outside, it would give me a rather large jolt as my mind corrected the internal image. This was not too unlike when someone experiences their legs suddenly shooting straight out after tripping over in a dream and suddenly waking up, though in this case it was my imaginary vision, not my legs.
Quite quickly after my sight faded, I noticed that I was not actually seeing black, but instead a blur of dark and faded colors and patterns. At first it was rather vivid reds and greens, but over the years it has dulled down more to faded browns with a hint of other colors. Its definitely clear that this visual information has nothing at all to do with the outside world, but I do perceive it where my vision once was. That is to say, that it is there all the time, right in front of me, not just in my imagination. This I'm sure is rather like phantom limbs for those who have had amputations. What I can see cannot really be controlled, most of the time its rather random. However, sleep deprivation, drugs such as alcohol or morpheme, can change the brightness or hue of what I see, sometimes quite dramatically. Recently I have also started to realize that if I concentrate quite hard on the thought of a particular color (for instance my favorite color, purple) I can bring this color in to my visual field. But controlling its shape or brightness is still out of my reach at the moment.
I find it rather amazing how the brain allows the perception of vision. From my own experiences, it is clear to me that much of what we see is actually generated by the brain and is not simply just a live camera view. A part from the meaningless dull color I now see, I also see some other things, that are in deed linked back to the real world, but still obviously do not come directly from my eye, but instead are generated from data from my other sences or memory. When I first lost my vision, I frequently noticed bright flashes of light if I turned my head fast. At first I was hopeful that this was my retina briefly reactivating, though after a bit of trial and error, and the fact that this still occurred while wearing a prosthetic eye over the top of my real eye, I realized that this must be simply a trick of the mind. These flashes I saw in fact were not just random bright light, they were actually an exact image of what I would have seen had I not lost my vision. These images would only happen in familiar places, which makes sense as they were coming directly from my memory.
I did manage to trick my mind one day by quickly turning around and very carefully taking note of what I saw. This time I saw the wall I should have, and the light above this wall was on. However, in relity, the light in fact was off. My brain had got it wrong. I also carefully watched to see exactly what happened to the image (how long did it last etc). And what I noticed was that it stayed for about a quarter of a second, and then... all the red in the image disappeared... and then all the green... and then all the blue, finally dissipating the image completely.
Another example of these generated images, although in this case not that clear, is when I move my hand in front of my face. I do actually see a faint shadow move across my visual field, moving in the same direction and at the same speed as my hand. However if I stop moving my hand, the image goes away very quickly. This certainly is not real vision, but instead my brain generating the shadow from my movements. I had a rather odd experience with this once, where I was sitting on the floor in the bathroom, and I put my head on my knee, so that it was directly covering my left eye. As my knee moved towards my eye, my brain drew in the shadow. But as my knee settled against my head, the shadow went away, just leaving the general background dull color I normally see. This caused me to have the very strange sensation that my body must be transparent! Because although I could feel my knee directly in front of my eye, I could see the normal dull random color, not the shadow, which suggested that in deed my knee was transparent. Of course I knew in reality that none of this was true, but its still interesting how your brain can put things together.
If I specifically don't think about my vision, I find that I start perceiving, or at least remember perceiving, a form of vision related to the environment around me. For example, I can tend to perceive the luminosity of a room (not only its brightness, but also the type of light). Sort of perceiving the light that would bounce off the walls, with out actually seeing it directly. I know the light, but do not see it. Of course though my mind can be tricked, and again this is all generated by memory, but when I'm busy with a task such as walking, or writing, I'm not exactly aware that I'm actually blind. I also find that if I remember back to watching a particular movie, I find it hard to remember whether or not I had vision when watching the movie. My mind has generated visual memories if in deed I had no sight when watching.
One thing I have not mentioned until now is my Synaesthesia. Literally meaning union of the senses, Synaesthesia is where one sense is is perceived in the way that another would be. For example, some people may hear a noise when they see a particular color or shape. There are many forms of synaesthesia, but the form that I have had since I was very young has been sound -> color synaesthesia.
This form of Synaesthesia allows me to see colors when I hear particular sounds. For instance the sound of a bell is yellow, and the sound of a lawn mower is pink. These colors do not appear directly in my visual field, but rather in my mind's eye. However, they are still very strong. A part from sound -> color synaesthesia, I do also have taste -> color, temperature -> color, and grapheme (letters, numbers etc) -> color synaesthesia. One synaesthesia that I have that does not result in color is list -> position synaesthesia. This is where I perceive lists of things (times, dates, etc) to extend in order from my lower right, going up and around my left shoulder, creating a tilted anti-clockwise circle or spiral.
These synaesthetic experiences have not been a great disadvantage to me, in deed I'm glad I have had them, and continue to have them, as it is one form of vision that does remain with me to this day. However they can sometimes make life just that little bit difficult, especially when they cause me to confuse concepts or names. For instance sometimes I can't remember if I have an appointment at 2 pm, or on Thursday (as both of these words are pinky purple). Another example is when I kept telling someone that a real estate agent we spoke to was Paul. This caused confusion as there was no one there called Paul. In the end I realized his name in fact was Tony. It happens that in my mind Paul and Tony are both dark green.
Vision has been a very important part of my life, and I hope it remains so. Although I have come to terms with being blind, and although I still have my memories, my synaesthesia, my phantom vision, and my dreams, I still look forward to the day when I may be able to gain vision by some kind of technological or medical means. Although I would probably have to gain at least the same amount of sight I once had to be truly happy, any form of controlled perception in my visual field, even for just a few minutes would be a wonderful thing.
In 1984 I had three corneal transplants as an infant. However, being in Perth, I suppose your doctor's hadn't heard of me. So I contend that I was younger and earlier than you.ReplyDelete
I have Peter's Anomaly. A condition where you are performed with various deformaties, the primary one being of the eyes. Was this considered as a possibility? I ask, because the things wrong with your eyes sound similar to mine.
My left eye's cornea was completely clouded, and they tried three different corneal transplants, which of course were going to be rejected because they can't give an infant rejection drugs. I don't know why they bothered. Maybe you were the youngest child to have a successful transplant?
I now only have light perception in my left eye. In my right, they did an iridectomy, that is they cut a small window in my iris to let light through. This worked.
My vision, as it is out of my right eye, is largely as you described, albeit I have a lens, and with the correction of glasses I am able to pick out details in things. I very clearly remember how things looked when I was a child and before I had glasses, everything was foggy, and a bit blurry.
I can definitely relate to your points of view about depth perception and about the size of things. I really can't imagine what depth perception would be like because I can get depth from the size of things, judging how far away they are. I suppose this is like someone looking at a painting.
And as for print. I still marvel at the way people can pick up something at normal print and read, it, I can't imagine how the stuff would be big enough to read. If i think about that too much, it scares me to think how big stuff really is for sighted people. I mean, if 12 point is is big enough to read, than big things like 6 point must be unbarebly large.
I hope my comments are useful or interesting or something. Sorry about some of my spelling and grammar, I should go have a coffee, but I really wanted to make sure I got round to commenting, rather than putting it off until after coffee and then neglecting to.
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