Wednesday, January 17, 2018

Take me off pause when you leave

An Introvert's poem. By Michael Curran

Life can be wonderful, so much to achieve.
But sometimes it's too fast. Too much to perceive.
I know I can help. Am sure I can make change.
I can see how it fits. And how to arrange.
But sometimes it gets too much, and I need a reprieve.
I need to zone out. Take me off pause when you leave.

I don't speak of love. That's not my way.
Rather I show my love, through actions each day.
I do care for you, I hope that you see,
But the way that I show it... It's different for me.
I'll do all I can, to ensure your good life,
But my own solitude, I cannot sacrifice.

Life can be wonderful, but sometimes too large.
I hope you can understand, I need to recharge.
Each touch and each word, they all come too fast.
They puncture and tire me. I wait for the last.
Your presence today, I cannot receive,
I'll just wait in my bubble. Take me off pause when you leave.

But now:
I've listened to music, and drowned out the noise.
I've had comfort food, and snuggled my toys.
I've had a nice break, I'm refreshed and switched on.
I'm ready to deal, with what comes along.

And now you've come back, and now it seems right,
Your company now, is such a delight.
I’m so in the moment, you wouldn’t believe.
Take me off pause. And this time don't leave

Tuesday, March 10, 2015

My First Sky Dive

For the last week, I have been attending the CSUN disability technology conference in San Diego California. Just like as in years past, the conference proved very useful for my work, and it was great to catch up with so many wonderful and smart people in the Accessibility industry, including friends old and new. However, as I had around 6 hours to spare on the final day before my flight back to Australia, I thought I'd make this year extra special by going Sky Diving. What the hell, several other colleagues had done it earlier in the week, and had seemed to return in one piece. I made the final decision to do it at about 2 am on Saturday morning while I couldn't sleep. It didn't take me long to locate the Sky Dive San Diego website, and book in for a tandem dive at 2 pm later that day. The whole experience using Sky Dive San Diego (including the dive itself) was great... accept for 1 issue to do with the booking process. It is really easy to book on the website. Just choose your package, choose an available time, and pay. However, it is only when you receive the confirmation email at the end when some of the most important conditions are clearly laid out. I'm sure they are available somewhere on the website, but neither I or my friend Steve (who tried booking later) noticed them. These were conditions such as the fact you must be over 18, you must be under 230 pounds for tandem, and the "refundable" package (which I chose), can only be refunded up to 48 hours before. I chose this package 12 hours before and the site did not stop or warn me. Although I did not fight this particular point, my friend however did call and ask for a refund due to another condition listed in the email and not made clear on the site. Thankfully the second person he spoke to on the phone was sane enough to fully refund him. My friend and I left for Sky Dive San Diego from our hotel around 1 pm. The trip was supposed to take around half an hour in a cab, but due to a broken tole booth, and a cab driver who would not accept a credit card, the trip took just on an hour, getting us there technically 1 minute late. Thankfully the staff there didn't seem to be in too much of a rush, while we sorted out money for the cab driver. The first thing one must do when arriving at Sky Dive San Diego is to handle some administration tasks. These include showing photo ID, filling out mailing forms for your optional video (thankfully they do know it is the 21st century and also give you a nice link to it on the internet), and filling in your legal forms. The form must be filled in on one of several iPads available in the office. You must stand in front of it at all times, keeping yourself in clear view of the camera. No one else may touch the iPad while filling. Obviously for me being blind, and no means of activating VoiceOver on the iPad probably (I admit we didn't try as we were already a bit late), my friend did all the reading and typed all names and contact info etc., but I still signed each page and checked the I Accept checkboxes... with his help of course. The form is long. Very long. It also seems to repeat itself and asks for your signature multiple times. In short the form pretty much says you can't sue them for anything, and there is no insurance what so ever. All important stuff of course, but just be aware it takes a while. Finally after successfully filling the form, you are given 1 or 2 envelopes. One must be handed to your tandem instructor, and the other must be handed to the camera man, both before boarding the plane. From the feel of them, and from what I think the instructor may have said, these envelopes contain money. I'm guessing this is to ensure that all diving workers receive pay before the dive. After leaving the office, you then wait outside the building, next to a small grassy field where you can already see sky divers coming into land every few minutes. We waited out there until I was called for my training session, which consisted of a training instructor explaining what to expect from here, all the way to landing. He showed me the correct body shape I should assume when my tandem instructor and I leave the plane, and he had me practiced this both standing up first, and then lying on the ground. The position is rather like an upside-down rainbow, or a smile. I.e. head back, bum forward, legs back and up. when you assume this position when first leaving the plane, you must also hold on to the front straps of your harness, until your tandem instructor taps you to notify that you should let go of the straps and start to move your arms out from your sides. After training, you then wait to be called over to get fitted up and to meet your instructor. After perhaps 10 minutes or so I was called over and was helped into my harness. It is a strange configuration of straps that fit over your shoulders down your front, lots of things on the back including 4 places for the tandem instructor to clip himself to you, and straps around each upper leg. It is when doing these bits up that it finally becomes tight. I then met with my tandem instructor, Larry. After giving him his envelope and alerting him to the fact that I was blind, my tandem instructor and I started to walk out towards the plane, while he explained exactly what would happen once we got there. Along the way we also met my assigned camera man who took my second envelope and got to work straight away asking me questions and revving me up to go (while recording). From a long way off I could hear the plane's engine already in action. The unmistakable smell of plane fuel was also very much present. As we approached the plane it became extraordinarily noisy. Pretty much to the point where I could not communicate with people. No problem though, as discussed beforehand, I had my hand placed on the 5-rung ladder which I was to climb to get up into the plane, and another guy was at the top ready to help me get into position on my seat. My tandem instructor climbed up into the plane after me and also took his seat. In my sky diving group there were several members of a family, including a man in his older years. With me, the other family, all our tandem/AFF instructors and one or more video divers, the plane carried around 20 people. We got in to action, taxying to the runway. For some reason I can't quite remember, we taxied all the way with the main door open, and then someone was instructed to close it just as we started to accelerate for take-off. I've been in some smaller-sized commercial planes, for instance when traveling between LA and San Diego or Canberra and Sydney, but I had never been in something this small before, let alone also sitting perpendicular to the plane's direction of travel. Therefore, this was already starting to be a new adventure for me, even before the jump. As we made our ascent over the next 10 to 15 minutes, my tandem instructor explained some more about exactly what was going to happen when we got to 13000 feet. And whenever the video guy felt like it, he would do more question asking and revving me up. My instructor explained that just before 13000 feet, I would slide across and sit on his lap. He would then connect me to him and we would walk squatting to the open plane door. Once on the edge, we would prepare to jump by rocking forward, then back, then finally forward all the way out, at which point we would be lying face down to the earth, free-falling. We must assume the correct upside-down rainbow shape at this point. Before long it was time for me to slide across and get connected to my tandem instructor. Oddly it was at this point when I really appreciated how steep our ascent angle was, as sliding across to him (towards the back of the plane) was far from a horizontal move. I never really felt nervous at any time during the flight or jump. My adrenalin probably started to kick in a bit as we took off in the plane, but it really kicked in when someone again opened the plane door, signalling that we were at 13000 feet. I travelled on my instructor's lap connected to him for a little while longer, and then someone shouted: "Video Out!" which I guess meant that my camera man diver had jumped. My instructor and I then slowly walked squatting across the few feet to the plane door. As we got very close, someone put their hand on my head so I didn't hit the top of the rather low door. I was also instructed to hold on to my harness straps on my chest. I could hear a wall of wind in front of me. The air was much colder than on the ground. I remember feeling that the very tips of my shoes were off the edge of the plane. Probably due to noise, there was no longer any verbal communication between me and my instructor. I was sort of in my own world at this point. Then I felt it: rock forward. "is this it?" I thought. Rock back. "Think so. I better remember to assume my correct shape pretty quick." Rock forward... The clear feeling of falling… and then pretty quickly stabilizing lying horizontal to the earth. "aa yes, asume correct shape". Even there and then, I was somewhat surprized that I was still able to think easily. For almost the next minute, we were in free-fall. However, the feeling of falling (downward acceleration) was only felt for the first 5 seconds or so, as after that we were at terminal velocity because of the atmosphere. The majority of the fall really just felt like not moving, lying horizontally with this massive wind blowing straight up at you. And although I could feel down from up, and I knew that the earth was below, my mind's vision was painting a picture like falling into the sky. Still down, but obviously with no vision, I had no sense of the land below. It was a strange feeling. Pretty quickly after stabilizing in free-fall, my instructor tapped me on the right shoulder which signalled to me that I could let go of my front straps and move my arms out from my body. I slowly did so. During the fall, I remember my instructor sometimes slowly moving my arms around a bit. Possibly for aerodynamics, but possibly for a better video. It wasn't terribly hard to breathe up there for me, though I did feel the pressure on my chest from the wind, and I'm pretty sure my face was locked in some kind of hideous expression for most of the time. I remember making some quiet groaning noises as well. As we got further and further in to the minute of free-fall, my memories start to get a bit jumbled. I vaguely remember thinking about the length of time and altitude etc., but also always coming back to the thought that I am completely helpless here. There is absolutely nothing I can do right now but to simply live the experience. It was really quite relaxing and freeing for me. I also noticed that I could feel temperature gradients. It ever so slowly got warmer as we fell, but a couple of times I did feel some slightly warmer spots along the way. But then my mind was suddenly brought out of its wondering by this intense feeling of... turning inside out! My instructor had obviously pulled our Parachute chord, so very quickly we started decelerating and assuming more of an upright position. it was a really strange feeling. It started so fast. It was really like someone had suddenly pressed rewind. Of course deceleration is really just acceleration in the opposite direction. So it feels like you suddenly get pulled up. Yet at the same time, as you feel you get pulled up, that wind coming up at you takes some time to die down. Rewind, inside out, liquid... it is very hard to describe. After a few seconds things calmed down and we were left quietly gliding along. The first thing I needed to do was to fix my ear drums. I could hardly hear anything due to the sudden increase of air pressure while we fell. I blocked my nose and mouth and did the blowing thing and then swallowed. Yes, I know it is bad, but I've always done it on planes. My ears were all fixed, and I could now talk with my instructor, and just enjoy the quiet ride. My instructor seemed quite ecstatic about the success of the dive so far, and complimented me several times on my ability to assume the correct shape accurately and quickly. For the next 5 minutes or so, we slowly drifted towards earth, while my instructor described our surroundings. It sounded beautiful enough, but it was already good enough simply to be hanging 3000 or so feet in the air, occasionally turning, to be at various angles to the wind and to move toward our grassy landing area. Soon we were around 1000 feet and my instructor reminded me that soon he would tell me to lift my feet up for the landing. 300, 200, 100, "lift your feet now."... and bump. Surprisingly not a hard landing, though enough for us to both fall backwards. My instructor disconnected himself from me, and I stood up. I was feeling great. No shaking, no adrenalin anymore, but, darn I was happy. I profusely thanked my instructor for the ride, and we started to walk the 50 yards or so back to the building. My video guy was there along the way of course and did his usual question asking and revving again. I finally got back to my friend, and I got my harness off, collected my instant photo CD and went inside. We were able to take a quick look at the photos on a computer to double check that they had burned correctly. Oddly the first 150 photos were of someone else, but the last 100 were all me. The video however takes up to a week to be edited, so even at time of writing this is not yet available. After checking the photos we requested a cab, and sat outside and waited. We finally got back to the hotel with a good hour and a half before I needed to head to the airport for my flights back to Australia, so I bought dinner for my friend to thank him, and we had an enjoyable meal catching up with several others including 2 who had Sky dived earlier in the week. My sky diving experience was one I will never forget, and most certainly something I would do again. The only time I felt nervous was just after I had booked my sky dive at 2 am that morning. After that, I had fully resigned myself to doing it. I seem to be very good at relaxing and surrendering myself in situations where I have no control. I find it an extremely freeing feeling. This could be both a good and a bad thing of course. Obviously choosing to sky dive is a personal thing. You must way up the risks, no matter how small these days, but if choosing to dive, I would highly recommend Sky Dive San Diego. All the instructors were very friendly, keeping it as enjoyable as possible, yet still keeping safety at the top of the list. Obviously the form was a little hard to fill out as a blind person, but other than that, both my trainer and instructor did their utmost to ensure I received all detail in a way I could understand, and ensured that I was always where I should be and doing what I was supposed to be doing. An extremely enjoyable experience.

Wednesday, July 25, 2012

School Dreams

Every time I get that little bit stressed either at home or work, I end up having this recurring dream that night, which oddly allows me to wake up the next morning feeling quite okay. This is obviously a good thing over all, but I must say the dream itself is still rather stressful while I'm in it, and also, now, rather boring. The dream is always me in High School. I am either working or collecting my books in the integration room (a coordination/work room for students with disabilities and their helpers). I think about my next class (usually maths or English) and dread going to it. I also think about the fact that I havn't been to another particular class for about 3 months... "can I get away with not going to it for the whole year?" Usually towards the end of the dream though I come to realize that this is actually my second time going through high school. In fact its my choice to be there. I usually then leave the school and go home, knowing that I made the right decision for myself. The most recent occurrence of the dream was a little more odd in that I came to realize that actually I have had a good job in software development for the last 4 years or so... "I don't have to cope with school on top of that!" I thought to myself. And as usual, I woke up feeling pretty good about life. Over all, I didn't think school was the worst place on earth... but, I guess there's still issues there that I'll need to work out, one day :)

Sunday, July 10, 2011

Vision - Through the eye of Michael Curran

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.

Friday, October 22, 2010

Strange call from Telstra

Yesterday while sitting in the study, I received a call on my mobile. The number was a 039 number, which means in Australia its from Melbourne.
I answered the call and at first heard nothing. Then, I started hearing a standard dial tone -- the one you hear when you're waiting for the other person to pick up the phone when you have rung them.
This went on for about 10 seconds, and then... the phone picked up. On the other end of the line I heard what seemed to be outside trafic noise, or a train station or something... and then a young voice, said "Hello?".
I was rather confused and hung up my mobile very quickly, which I'm sure the young person on the other end thought was quite rood I guess.
I started to think... did I miss that other call, and then accidentily bump something on the mobile to ring that other person? surely not.
I then looked at my call history on the phone, and sure enough, all that had happened was one incoming number, that 039 number. There was no outgoing call after that.
I was very curious, so I rang that 039 number again.
What I heard, was a message that went something along the lines of:
"Hi, we've just tried to contact you to talk to you about products and services from Telstra you may be interested in. If we did not reach you, we will try you again soon. However please feel free to leave a message."
I hung up.
So, I guess, though this does seem rather impossible, that Telstra tried ringing me and Then I answered the call right that the very point there system gave up on my call and went to ring some other person. However, the system for some odd reason routed that new call to me, rather than to the sales rep at Telstra.
Very strange!

Wednesday, September 29, 2010

Finally Registered as an Organ Doner

After listening to the story about Marc Colvin on ABC Radio National's Life Matters, I have now registered as an organ/tissue doner. My family is supportive of my decision, including my wonderful wife, whos beliefs probably would not let her register herself.

Born virtually blind, I was lucky enough to receive a cornea transplant at the age of 4 and a half (apparently I was the youngest child to have one in 1988). Although logically this meant I probably should have definitely become a doner myself when I was old enough, this story, plus another on the same subject on Radio National's In The Spirit of Things a few months back I think, finally pushed me to register.

Although at the age of 15 a second eye operation went rather wrong causing me to loose all my sight, I am extremely greatful for the 10 years of partial sight the donated cornea was able to give me.

I never got to thank the family of the 19 year old boy whos cornea gave me those years of partial sight, although I believe I did get the chance to contact them in around 1999 or so. It just happened though that this was just after I lost my remaining sight at 15, so I was certainly not in the right space to be thinking about those kinds of things.

Although the donation I received was not needed to fix a life-threatening situation, the gift has most certainly shaped who I am today. I certainly believe that people must be comfortable with the decision to donate, and in no way must it conflict with their cultural or religious beliefs. But, if people are happy to donate, please make sure to register, and let your family know you have done so.

Tuesday, September 28, 2010


From as far as I can remember, I have always seen colors when I hear sounds, feel temperature, and slightly when I taste things. Mentioning this to people throughout my childhood usually just resulted in confusion and funny looks. For example, there was the time that my family and I were playing a word association game, and the word someone told me was "teacher". Me, being the honest boy I was said straight out: "The color peach". People just thought I didn't understand the game. Another time, I was being taught about the blue and red markings on water taps (to tell which is which). I wanted to asked: "Why are they red and blue? hot is pink and cold is yellow". And yet another time, in the car with mum, I asked "You know how the sound 'ee' is light blue right? well..." With the reaction mum gave me it was then I certainly knew this was specific to me. I was so glad in 2002 when I finally found out this was called synaesthesia, and that there were others like me. The first type of synaesthesia I have is sound-to-color. This is where I see a color in my mind's eye when I hear a sound, rather vividly. Its worth noting that for some synaesthesia can be quite debilitating as color can be projected outside the body rather like an elusion, though mine only remains in my head. All sounds produce a particular color. For example, the sound of a lawn mower is pink, and a trumpet is yellow. It seems for me, that there is some pattern to this. For those well versed in sound and harmonic theory, it seems as though a sine wave going from low to high presents a backwards color spectrum, (blue, green, yellow, orange, red), but is extremely biased to red. Rather like looking at a rainbow through red glass. However, when further harmonics are added, such as in a sawtooth wave, or other instruments, the rainbow becomes more vivid in one or more parts of the spectrum. E.g. a sawtooth wave is primarily bright green, a guitar is purple-pink, a base guitar is dark blue. The second synaesthesia I have is grapheme-to-color. This means that when I think of a number or letter, I again see a particular color in my mind's eye. For example A is white, B is dark blue and C is yellow. Or for an example of numbers, 2 is blue, 3 is red, 4 is rust. Related to this, I also see colors when I think of particular words. Sometimes the color is simply generated from the contained letters and or sound. But for certain categories such as days of the week or months of the year, these have very vivid and specific colors. Feeling large changes in temperature with my hands etc also produces colors for me. Very cold is yellow, this fades away to nothing as it approaches my normal temperature, and then getting warmer produces pink to white (too hot). Finally I see dull colors for taste, including pink for sweet, blue for salty, yellow for sour and tan for bitter. My synaesthesia doesn't just produce colors, in some circumstances it also gives shape to those colors. An example of this is time of day. When I imagine a certain time of day, I see all the hours represented by their associated number colors, placed in a huge ring around my head. How ever, this ring isn't completely horizontal. The ring is tipped so that 12PM is slightly higher than 12 AM. When I think of an exact time, (in my inner mind) i turn to face that time in the ring. So if I think of 12PM, I see 12pm right in front of me, but slightly higher than my nose, and I see 1PM to the left, and 11AM to the right. Yes, that's right, my time ring actually runs anti-clockwise. If I am thinking of say... 4PM, I see 4PM in front of me, at about mid height, with 3PM to the right and a touch higher, and 5 to the left and a bit lower. The hours are their number-color equivalents, except for the fact that the hours from 7PM to 9AM are slightly darker than normal. Days of the week, and months of the year also show themselves as a slightly tipped-up ring around my head, going from right to left. Lists like letters and numbers (which don't rap back around) just keep going up and to the left. In fact, all ordered lists that you can think of, all show themselves to me as going from right to left. The only exception to this rule is the spelling of words, and musical scales. These both go from left to right. I do not think of my synaesthesia as a disability or something negative. I find it can help me to visualize and remember numbers, or sometimes to help me remember names. However, sometimes I must admit it can get me in to a bit of trouble. An example is 2 pm and Thursday. Both of these concepts are the same type of pink. So sometimes I can't quite remember if the appointment was at 2 pm, or it was on Thursday! I was born with only partial sight, and at 15 became totally blind. Therefore I am extremely glad that my synaesthesia exists, as I don't think I'm ever going to forget the wonderful world of color. Indeed, one of my most favorite pastimes is to relax with some headphones and some music such as Enya, which can always produce an amazing display of colors for me.