Friday, September 27, 2013

Why and how can text-to-speech programs be helpful to some strabismics?

It is only recently that I started appreciating the value of text-to-speech programs and there's a couple of good reasons for that.

- Not all text-to-speech programs are created equal. You have to find the right one. I'm not in the business of making publicity for anything but I think the program I'm using deserves to be mentioned. TextAloud is available in English, Spanish and some other European languages. Especially when combined with an optional 'natural voice' it proves to be enjoyable to work with.

- My vision had to reach a certain level for it to be a help rather than another sensory annoyance. Now that to a large extent my double vision has subsided but I still feel like I can't fully enjoy my vision, it can be a nice 'crutch' while keeping me on the road of vision improvement. Previously the sound was just adding to the visual confusion of double vision and making for even more sensory overload. At this point in time I possess the ocular motor skills to align my eyes and execute the saccades for reading even though it's a fragile undertaking. Somehow with the help of text to speech technology the visual pressure of executing the eye movements and simultaneously extracting meaning from the text with vision alone is relieved by the auditive help. My productivity has risen greatly without hurting myself in the form of headaches, jaw cramps, eye strain, ... Essentially I like it because it allows me to do the things I love like learning new things and exploring new ideas while 'looking soft'. This activity is contributing, rather than harming, to my health and vision in the form of visual fitness and sensory integration. Combining the strab-business with pleasure for a change.

 This, ladies and gentlemen, is the beginning of the end of all this misery. Opening up opportunities for a learning disabled brain while allowing it to further heal itself. To me compensatory technology is useful as a means of transition to better vision not as a final solution. Sometimes I talk about VT and about how I want to 'break even'. By breaking even I mean reaching a level of functional vision that allows me to do my thang without regressing. Obviously I have learned and studied before in my life but always at the expense of my health and that vicious circle has to be stopped. I am not quite there yet but this technical aid is giving me an idea of how it must be and I'm loving it. Just being able to be absorbed with a certain subject without suffering. Normal people are so visually spoiled...

Saturday, September 21, 2013

Book review: Fixing My Gaze by Susan Barry

After I read 'Fixing My Gaze' for the third time in three years I decided to write a long overdue review about the book that got this whole VT party started. I first read it during the summer of 2010. At the time I was undergoing all kinds of personal, academic and medical crises and I realized I was on my own. So I turned to the oracle that is Google and went looking for better alternatives to help me get rid of my double vision. This time in English. I discovered Vision Therapy. I was already flabbergasted by this whole new universe of useful information on vision therapy related websites which I was reading with great effort. Then I found out about a book called 'Fixing my gaze' and watched some Youtube videos by the author of the book named Susan Barry. So... THERE IS A SOLUTION NO ONE HAS TOLD ME ABOUT?! Aside from the cerebral double vision short circuit all kinds of fireworks were going off in my brain. The situation was bleak but now there were new elements to consider. Quickly I ordered the book and when it arrived I read my way through it in a less quick post-op double vision strab kind of style. This book contained the information I had needed ever since my eyes started crossing at the age of three and it was clear I would have to do whatever it takes to make things right again despite of the twenty year delay and medical mishaps. Denying the information in this book, as some 'VT critics' seem keen on doing, should be listed as a criminal offence. After all, the book only talks about healthy visual brain development and has the endorsement of two Nobel prize winners on the back...

Needless to say this book got me through some grim times. If it was not for the constructive perspective and the better outlook this book provided I might not have been sitting here at all. That's something unusual to say in a book review I guess. Even reading it for the third time gave me another boost of much needed energy. Every time I read it I am relating more to different parts of the book. Partly because of the fact that I was younger back then and partly because my vision has actually changed over the years! Some parts I couldn't relate to simply because of not having had that visual experience. The first time I read it I wasn't just younger, I had the vision development level of a baby. Worse, a visually wounded baby.

Something that struck me every time I read it is the fact that suppression is a more energy consuming way for the brain to see as opposed to normal binocular viewing. These adaptive mechanisms such as suppression are very effort consuming. Smooth binocular viewing is the most efficient way to use cortical real estate. That makes a lot of sense of course. It's just surprising how far some people can get removed from that healthy integrated viewing position. As an eye doctor you got to be very ignorant about what you are doing to have patients end up three or four years of rehab removed from such a healthy situation. Sadly the brain does not adapt overnight but fortunately it does adapt. This is masterfully described  in various passages, notably the one covering 'the lazy eye myth'.

All in all the most touching moments in this book are the ones in which Susan Barry attempts to describe how it feels to see in 3D. Paradoxically, there is no way to describe a qualia as powerful as stereovision with language. This makes it all the more tantilizing!

'Gaining stereovision, I thought, would augment my perception of depth but not change it in any fundamental way. So, I was completely unprepared for my new appreciation of space and for the deep feelings of joy and wonder, the enormous emotional high, that these novel sights gave me. To experience for the first time seeing the most ordinary things in stereo feels like scaling a mountain and witnessing your first mountaintop view.'

Or the description of Rachel, someone who was also previously stereoblind. 'It was as if I had stepped inside a painting that I had spent my whole life observing. I was awed and moved to tears. I never experienced a forest in this way. The depth of space and emotion was overwhelming.'

Being still on the road to such extra ordinary epiphanies, my attention was particularly drawn to the link between motion paralax and stereovision. Aside from monocular cues such as size, shadowing and context, stereoblind people get some added sense of depth from movement. This is called 'motion paralax'. It seems that once you learn how to see binocularly this sense of 'motion paralax' is greatly enhanced on top of the newly acquired stereovision.
'So, my ability to see in stereo also translated to a heightened sense of depth through motion.' 'For me, as well as for many of my formerly stereoblind friends, one of the greatest surprises and delights of our new vision has been this incredible sense of depth while moving.'
This stayed with me because lately when I take my walks it seems something weird is going on while walking. Things sometimes seem to have kind of an aura. Might just be the gateway to stereo, or heaven... Whatever floats your boat.

Before you start saying I'm totally over-the-top... It's not all good. Visual transformation takes its toll and even though I don't have stereovision yet, I can already relate to it 'just' from eliminating my double vision. Because many events that happened earlier in my life are only now showing their long term effects along with the overwhelming and exhausting effects of constant visual transformation I related very much to this paragraph.
'Many days I felt both exhilaration and exhaustion. Most people learn to see when they are infants, at a time in their lives when they are cared for, are free to get cranky, and enjoy lots of naps. I was relearning how to see as a responsible, contributing adult. While I went through all the motions at work, I desperately wanted to be left alone, to be quiet and reverent, to take in one long, delicious look after another. I disappeared on long, solitary walks, I was at a loss as to how to explain this to my colleagues and friends.'
She talks about how this feeling of sensory overload just made her (and others with strabismus) want to be alone. How all the new experiences made her look for more peace. She even describes avoiding the news and instead listening to familiar music. About how the visual transformation is so all absorbing that she had to take on fewer responsibilities at work. I didn't even remember reading that the first time. Now it's so relevant to me.

Another awfully familiar experience is feeling like an idiot while trying to explain what you are doing or what you are going through. You want to tell everyone but the reactions are so mellow that you try to relish small victories on your own or with strab friends on the internet. You want to broadcast that stuff even though the rest of the world already 'got it' at the age of four months.

It's clear vision therapy or any kind of rehabilitation takes ungodly amounts of perseverance, practice and determination. I knew that was going to be the case and I thought 'Bring it on!'. I still think that but now I've got the social scars and a VT legacy to back it up. However great the book might be, it will not save you from that. So the fact that I went 'all in' for such a long time and basically studied my way out of this sorry pickle gave the pages about 'active involvement' in rehabilitation a special flavor.

Having read many other things about vision during my VT time many 'technical' names, VT techniques, the organisations involved, the neuroscientists and optometrists, the history of behavioral optometry and passages about the importance of vision in developmental delays all fit together much tighter. The author also emphasizes that the treatment of strabismus is not unambiguous. I personally too have heard of people who have greatly benefited from undergoing surgery. However, it should be stressed that surgery is certainly not the only way to treat strabismus and that in most cases VT is required or even a combination of surgery and VT. Therefore it is of paramount importance that ophthalmologists and developmental optometrists start collaborating. Hopefully this book contributes to taking away the blinders many eye care professionals and educators are wearing.

Last but not least I don't want to spare anyone the closing paragraph of 'Fixing my gaze'. This is what many strabismics out there have been dying to hear and wonderfully recaps what this book is all about.
'I finally relaxed and thought back at all that had happened. When I first learned about stereovision in college, I assumed that if I could see in 3D, I would be better at threading a needle, parking a car, and hitting a tennis ball. Of course, all of this is true, but I had no idea just how different and how magnificent the world would appear in all its glorious dimensions. Most importantly, I learned that I was not the victim of a visual fate that had been sealed in early childhood. I could rehabilitate my own vision. My newfound and hard-earned stereovision has given me an enormous sense of security, confidence, and accomplishment. It is with a stable, clear, and depth filled gaze that I now encounter the world.'

Thursday, September 12, 2013

Strabismus and academia

Yes, so what about it? Well, it's complicated. I will try to explain it though. It's important to understand that my vision never could be relied on and it was always changing over the course of time. Initially as a first grader I had trouble learning how to read. At the time I didn't get why it was so hard for me but my mother tutored me a little bit and in the end I was able to read. I read slowly but I had a very good understanding and retention of what I read. However, reading aloud never really worked for me. I would lose my place, misread words or start reading the wrong line. Because the early beginnings of math are taught with columns of exercises instead of long lines you need to track binocularly, I got into the math and really excelled at that.

So things went on like that during primary school... Putting in massive amounts of effort to read and getting good grades. During primary school I was pretty much one of the top of my class but I put a lot of time into doing homework because I couldn't always pay much attention in class.

By the time I went to high school, even putting ridiculous amounts of effort and time into learning started to be insufficient. Of course I would try but it was weighing on me. Performance, or the way my vision had adapted to strabismus with suppression, was already eroding. Seemingly I was still an okay student but it didn't make sense. My math skills, because of the more visual nature of algebra, were leveling out and reading and language related subjects were still not my strong suit.

Two years into high school I became aware my working vocab in my own native language wasn't as rich as it should be. I was highly annoyed by this. I knew I wasn't stupid but why didn't I just know this kind of stuff? In vacations I forced myself to read books and look up words in the dictionary I didn't understand. I was always very motivated to learn but there was this 'invisible' barrier. Sadly I didn't understand my visual situation and how it could be resolved at the age of about 14. I was resolved not to be defeated and things picked up more or less.

A year later we started being taught English and the beginning was easy enough. I am, you are, ... However I remember having to read Jane Eyre. Boy, reading a book in my own language would already take me an ungodly amount of time, let alone if I didn't understand half of the words. So once more I would battle through every page looking up words I didn't understand.

Half way through high school I was having trouble keeping up. Especially during math class I was already happy to have copied the black board and I would figure it out at home. Again, having trouble copying the blackboard is a routine complaint by someone with binocular vision issues. I remember myself saying 'I don't have much of a problem understanding it when I see the math, I just don't get around to seeing ALL of it in a reasonable amount of time.'. I mean... Could I have said it any clearer for someone to help me?

Anyways, don't think I was failing miserably. I was putting in ridiculous amounts of efforts still. That never stopped actually. I was miserable but not failing. I could not entirely make up for my visual disability that way anymore so I felt the need to change to another course of studies with less math. To make sense of it all I told myself I didn't like math and I wanted to focus more on language learning. Actually I really like math/science and if there had been some visual help I would not have to choose between both. My math teacher even tried to convince me to maintain the heavy math load because she thought I clearly had the capacity to do it. She was right, if it wasn't for untreated binocular issues.

If I was going to give up something, I didn't want it to be in vain. Me being me and still putting in unhealthy amounts of effort, started to take language learning more seriously. This might come as a surprise because now I do speak four languages with considerable fluency but I never had much of a talent for language. Well, it's hard to say since everything has been so distorted by abnormal visual brain development. I might be one of those people who think that talent does not exist. It's all about effort, persistence and most importantly, being given the opportunity.

So when high school ended I wasn't exactly in the best position to make a choice regarding Uni. Because of my lighter math schedule in high school a lot of things already seemed off limits... In the end I settled for Economics. It seemed the best compromise and with my visual problems which I still didn't understand fully it was actually an ambitious plan.

I was determined to 'show them' and to do whatever it takes to succeed. I did just that. In the process I accidently broke through suppression and got myself into a serious double vision mess further complicated by surgeries. Four years later, at the age of 21, I graduated with an MA in Economics and into total visual disability. My reading abilities were litterally worse than ever. Education without proper vision care is a scam.

I started doing VT during my last year in Uni already and continued two years after that up until now with considerable results. I am hoping to achieve my goals during the upcoming 'academic year' and maybe, just maybe, study something out of interest and ability rather than settling for a degree that can be obtained with serious visual brain disability.

PS: I simplified the story a little bit to make it fit into a blog entry. I'm actually writing down the whole story in book format but more on that later.

Related entries on this blog:
- Visual impediments to learning: what's it going to be? Your health or your education?
- An unsatisfiable urge to become who I was supposed to be
- Strabismus and sports

Related entries on other blogs:
- Correcting stupid

Wednesday, September 4, 2013

Session 60: An unconscious reflex to many, a giant leap to a strabismic

Yesterday I had my 60th vision therapy session since I embarked on this mission almost three years ago. Things are as good as can be expected given my history. Expectations have already been exceeded several times and things are still getting better so objectively there shouldn't be any reason I can't get this monkey off my back if I keep strong.

A few examples of how far we've already come:

- After 20 years of accommodative strabismus and 6 years of them with double vision 24/7, I have eye alignment and single vision almost all the time now. This first showed its head in September 2012 and during the past year this has gradually been improving. I never thought I'd see the day! At the same time I know my binocular vision isn't 'locked' yet so I try to adjust my activities in a way that doesn't hurt further development of my vision. I'm not free yet.

- Complementary to this development is a 'vision test' I do frequently. It's a very simple test. Just making circles with my face while try to keep my eyes fixated on a certain point. Ideally the entire landscape doesn't shift in front of your eyes because of poor ocular control. However simple this is for most people, this has been a disaster for me ever since my second strabismus surgery five years ago. Over the past three years the gaze holding while head turning has been getting better and now I can almost do it without my vision doubling up while doing it. No self inflicted 'earth quakes' anymore. Almost. The uncontrollable eye spasms are disappearing. I don't have divine powers of stopping earth quakes but this is pretty freaking close.

- Every ten sessions my Vision Therapist takes out her standardized test box. It's a simple stereoscope like device one has to look into with simple cardboard charts being the tests. There was one particular chart I have never been able to get right. One eye sees a red and yellow block and the other eye sees a yellow and blue block. If you are doing it right you will see a column of thee little blocks, superimposing the yellow blocks. This 'final' chart has been so hard because the blocks are very small and require very fine close range motor control. I expected myself to be able to do it by September and yesterday I did.

My point being that ocular motor skills are still improving and increasingly the 'gaps' are being filled in.

- A cool, albeit modest, real life example of this is a computerized bar game I played last week with some friends. This particular game requires one to find 5 differences between two pictures as quickly as possible. The score depends on timely completion and the game gradually increases its difficulty. Two years ago I was 'like a retard' when playing any kind of game involving quick visual capturing of a situation and reaction to that situation. This became painfully clear when having to do visual assessment tests in order to get a job... This particular bar game required A LOT OF QUICK saccades. Last week my performance wasn't significantly worse than that of my friends. I could physically execute the saccades in order to play the game without any double vision. I mean... Two years ago I was experiencing constant double vision and I was totally baffled by any kind of visual test not concerning studied knowledge. After playing that game for a while I was tired, but what a universe of difference still. It's always good to put this kind of small events like a bar game in this broader perspective. To some people it would be insignificant, but it's huge. This tells me that over the next few months and year things will keep getting better visually. I have the same innate visual capacities as everyone else and however hard they tried to keep me from it, I will develop them.

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- How about this weather?