Monday, November 26, 2012

An unsatisfiable urge to become who I was supposed to be

I’ve always been excited about the idea of learning and reading. The prospect that hard work and intelligence pays off and gets you a better outcome. I had trouble learning how to read so my mother stepped in and gave me some extra tutoring before bedtime on a magnetic blackboard I had in my bedroom. Later I took over and often was one of the best in my class through hard work. But already from a young age it took a lot of time and effort to complete my assignments at night so I couldn’t do much else. School was providing the basics but I wanted to know more. Since my eyes would be ‘used up’ after school and after homework I would lay aside newspaper articles and books to read later ‘when I would have time’. Maybe somewhere in summer. When I discovered the beauty of a computer, its storage capabilities and the endless possibilities of the internet I was immediately drawn to this machine but somehow there was something stopping me from learning all the ins and outs. I learned more than most people but all in all I wasn’t satisfied by how little I knew and how hard it was for me to focus on and read the screen. Still, I was inspired by how this machine connected me to the world. Mind you, we are talking windows 98. I even figured out where the problem in the information chain to my brain was located. Information was flowing up on my screen quick as lightening and I wasn’t stupid, I knew that much. So what the hell was going on? The only connection between the screen and my brain was the visual. At least I could already thank Steve Jobs for a graphic interface by then but there was something about my eyes holding me back. Looking back in time there were a lot of indications… As a teenager I would tell my mother things like ‘It’s like I’m merely a spectator, I don’t really feel as if I’m present IN the situation.’ I still don’t really know what stereovision must be like but I’m fairly sure it will address this. There were countless striking remarks and behavioral tendencies I exhibited that should have rang a bell with one of the many medical and educational workers I met during my life time…

Granted, most times I wouldn’t take a flying start when it comes to learning new things but in the end I could always do it. Whatever it was: learning a language, math, solving a computer problem that no one else at home knew how to... It was just about keeping at it. Just because things are harder on me it doesn’t mean I can’t do it, I believed. Eye doctors had always told there is nothing to be done and I trusted in the idea that they knew what they were talking about. Even if I wouldn’t have trusted them… I recently corrected the Dutch (my native language) Wikipedia page myself. The paradox of strabismus: we aren’t good at reading but no one is telling us the truth so sooner or later we will have to read up on the subject.

Notwithstanding some troubles and alarming signs along the way in high school, I went to university with a combative mindset. At the time I had this cell phone allowing me to have a welcoming message shown on the screen when switched on. I set ‘IMPOSSIBLE IS NOTHING’ after the Adidas ads running at the time and I surely meant it. I must have been the most asocial student in freshman year. Not because I lack the social skills, but I just didn’t have the time and energy for it. Given my slow reading pace I had to read and study every single day, and it would take me hours to get through a few pages. You can probably guess what my credo was at the time: ‘Not because it’s hard , I can’t do it.’ Every single move of every single day was designed to complete my first year at university successfully managing my visual abilities trying to obtain the best result. What I didn’t expect was that my visual situation and ability to concentrate would change dramatically by trying to be a good student. In hindsight I've just fought my vision for 4 years, there hasn't really been a winner since I was on both sides... Already during the second half of the first year I started experiencing double vision. That was five years ago and if you want to know more about how it was handled you should read my very first post. The complete visual system was coming down, taking the rest with it. The most appropriate way to describe the whole story is by using the German word “Schlimmbesserung”. The word describes an effort to make things better that actually ends up making things worse. It’s incredible what kind of trust people have in doctors and how little people care if it’s not happening to them. That German word is pretty cool though.

 It is safe to say there has always been a ‘glass ceiling’ when it comes to learning for me. The harder you try to break it, the deeper you will be cut by the sharp edges and pay the price in health problems. Not trying to break that glass ceiling will cost you in other ways. There is no easy way out of this, unless you are one of the lucky few whose parents accidently found out about Vision Therapy. My VT friend Robert brought an interesting book to my attention. “Suddenly Successful: How Behavioral Optometry Helps You Overcome Learning, Health and Behavior Problems.” After reading 'Fixing my gaze' by Susan Barry I had this eye opening revelation, along with many other people, that all this time I had been fighting the wrong battles and an explanation for why they had been so unreasonably hard. ‘Groundbreaking neuroscience!’, I thought. It certainly is. Interestingly enough, the other book I just mentioned was published in 1991…

"When you give remedial education, tutoring or counseling to youngsters with vision imbalances, it's like trying to drive your car with the brakes on. You won't get too far. Would you try to nail down floorboards without a hammer? As this federally funded study has shown, learning problems and antisocial behavior change after optometric vision therapy. Once some harmony and balance exists in the vision system, then the youngsters can begin to benefit from traditional education." ,- Suddenly Successful: How Behavioral Optometry Helps You Overcome Learning, Health and Behavior Problems

I’m not going to go into the incomprehensible cover-up of visual rehabilitation, but it is clear that its absence has left a lot of unlocked potential still to unlock within me and within millions of other people. When things got really bad and kept getting worse, I wondered if there would be anything in the world that would make it worth suffering this much for. 'Fixing my gaze' gave me a hint of what it could be. That book didn’t come one second too early... I had always felt like a tiger in a cage, the cage being my own body. The cage kept getting smaller and smaller. Now someone was telling me about a way to break free! It’s like I’ve been living in this altered version of reality my whole life and now I have this unsatisfiable urge to become who I was supposed to be. As Susan Barry states in a more recent article: ‘gaining stereovision was one of the most empowering, liberating experiences of my life’. I really believe it is and I will achieve it or I will die trying. Not because it’s hard I can’t do it, right?

Saturday, November 17, 2012

Similarities and differences between Strabismus and MS

A couple of years ago, before I knew about Vision Therapy and I was very down because of studying with double vision without any solution in sight, I entered a musical instruments store. I wanted to get a book to teach myself how to play the guitar in order to possibly find ways to relieve my eyes and my obsessive brain. At the counter I had a nice chat with the sales person who himself was a musician and I started telling him about my condition. About how I was slowly losing control of my eyes resulting in double vision and how the harder I tried to do well academically the worse it got. He was very interested in how I dealt because it turned out the guy had Multiple Sclerosis. I am not an expert on this condition but it’s an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged. He had suffered various attacks and after every attack it takes a long time to recover, sometimes without full gain of function. A person with MS can suffer almost any neurological symptom, double vision is only one of the possible symptoms that can occur.

Source: Wikipedia
It's a very serious illness. Again, I’m no expert on MS but I think that currently there is no cure and it slowly progresses over the years. I don’t know exactly how long he had been suffering but he told me some days were really bad. Some days he lost the ability to play the piano which is what he loved doing most of all. It was quite an unexpected and magical encounter that day and the true meaning didn't actually occur to me until recently. I think some strabismics will not completely relate to what I am about to say but the ‘advantage’ of being a severe case is that some symptoms are much clearer. Strabismus is a neuromuscular dysfunction and, being a neurological symptom, can be part of MS. However, longstanding childhood strabismus starts out at an early age when you don’t learn how to use your eyes correctly. Problems occur immediately but get worse over time. Because the problem occurs at such a young age the experience is quite different from a sudden onset of strabismus later in life as the brain is very adaptable during that developmental stage called the 'critical period'. In the case of childhood strabismus the brain develops with a built in flaw, which is deplorable knowing that doesn't have to happen with the right external stimulation such as vision therapy. The neuromuscular connections that did develop despite misaligned eyes often degenerate over time and when put under too much pressure making your vision worse. Trying to do well academically was increasing my neuromuscular dysfunction because of the pressure put on my visual system. I could relate to him in the sense that I was slowly losing the ability to do what I love most: to read, to learn and to master new things. Also the central symptoms as stated in the above image are awfully familiar to me. The good news is that, unlike with strabismus that is caused by underlying and progressing MS, you can reverse this neuromuscular degeneration by relieving yourself of certain pressures and retrain these connections and even gain stereovision in most cases. I cannot repeat this enough:

 "Patients should be advised that many accommodative and vergence anomalies are neuromuscular problems and not refractive problems. Thus, the most effective treatment relies on not only spectacles, but active vision therapy to eliminate neuromuscular dysfunction. Patients should also be told that treatment (vision therapy) improves accommodative and vergence reflexes. Proper management usually results in improvement, due to changes in the slow vergence system. When the patient is cooperative, the prognosis for the elimination of accommodative and vergence dysfunction is excellent.
American Optometric Association 

 That’s why it should not be accepted that any child with this neuromuscular problem should slip through the net and has to deal with long lasting problems when it is perfectly avoidable. To go back to my story, I never did actually learn how to play the guitar because I was too busy ruining my eyes to obtain that degree after all… That didn’t turn out so well either. I wonder how that man would be doing now...

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Wednesday, November 14, 2012

How to prevent a strabismus or double vision burnout

Perception is a constant flow of action and reaction. Your own actions, even unconscious ones like moving your eyes, and other events beyond your control shape your perception and your perception shapes your actions. Both are intimately linked in a lifelong perceptual stream. Once your mind is infected with the idea that acquiring 3D vision is possible, a heightened sense of self-awareness, a lot of patience and supportive people can avoid a total double vision burn out. You can divert the visual stream to a better place, but it’s similar to steering the titanic away from an iceberg. You might hit some icebergs while you’re trying and it might do a lot of damage but if you get through it and keep persistently poking that VT bear, things might just start to change little by little. Even after starting Vision Therapy there are loads of road blocks in order to get out of this kind of burn out.

What's a burnout?
“A state of physical, emotional and mental exhaustion caused by long term involvement in emotionally demanding situations.” - Ayala Pines & Elliott Aronson
“A state of fatigue or frustration brought about by devotion to a cause, way of life, or relationship that failed to produce the expected reward.” – Herbert J Freudenberger

I was totally locked down in damage control mode, and even while trying to control the damage and reverse it, things kept getting worse for a long time. Why?

My understanding of my own condition is relatively new. A lot of ‘specialists’ told me there was nothing I could do so people around me accepted that and moved on. I tried to but things just kept getting worse. Going for a Masters degree while suffering from diplopia worsened by what was supposed to be a corrective surgery wasn’t really the most intelligent move either. But me being me, I would rather die than accept that I should be denied the opportunity to study because of something that isn’t my fault. Turns out that’s pretty much almost what I did… My abilities kept shrinking and the effort I had to put in to keep up my studies kept growing. Ironically, the combination of strabismus and a university education made me dumber in the sense that my ability to focus and read diminished throughout this period. The few visual abilities that had developed despite strabismus have gone downhill over the last few years of studying with diplopia. Hard work does pay off, but only if you do it in the right order. If I would have known the truth, I would have fixed my vision first and then moved on to more constructive study efforts. I acted on the knowledge I had at the time and did my best to carry on while sucking up the physical price without bothering too many people. Nobody suspected that this long silent struggle could be so damaging.

Example of double vision

"While individuals can cope with the symptoms of burnout, the only way to truly prevent burnout is through a combination of organizational change and education (in my case understanding strabismus and Vision Therapy) for the individual."

So when I finally graduated in the worst condition of my life, I wasn’t exactly at the same wavelength with the rest of the world. Thank God I had discovered Vision Therapy during my final year or I would not have seen a way out. Even so, the clash of me being KO and people’s expectations, whatever they are, of a newly graduated Economist actually set me back a few months. I lost some ground and had to rebuild. Again… Even after trying to explain the process of Vision Therapy to my immediate environment. ‘Yes, ok but…’. No but.

"The relationship between asthenopia (eye strain) and school performance is governed, to some extent, by discomfort. The increase in symptoms reported by young adults is probably related to increased severity of chronic symptoms that have been present most of their academic lives. "
American Optometric Association

Considering everything the graduation by itself was pretty much a miracle but sadly no one could read my mind or relive the last four years with me to know what it’s like. Or the last twenty years for that matter. Even people with good intentions were pulling me back, just because it’s impossible for them to understand. It’s a shame that good intentions can be so detrimental. It’s just a perpetual misunderstanding because you are running on a different operating system. From then on, my one and sole priority is something most people take for granted and never even heard of: gain control over my eyes and acquire healthy vision…

"Patients should be advised that many accommodative and vergence anomalies are neuromuscular problems and not refractive problems. Thus, the most effective treatment relies on not only spectacles, but active vision therapy to eliminate neuromuscular dysfunction. Patients should also be told that treatment (vision therapy) improves accommodative and vergence reflexes. Proper management usually results in improvement, due to changes in the slow vergence system. When the patient is cooperative, the prognosis for the elimination of accommodative and vergence dysfunction is excellent."
American Optometric Association

The deeper you’ve gone the harder it is to turn the current. Depending on how deep you have fallen, it will take months or even years before you start feeling better little by little. I am very fortunate to have had some very awesome extended family who allowed me to do what I have to do to get better. At that time it was very difficult to change environment, explain the whole problem again and the solution. I needed to trust my own judgment and take a stand because I am the only one who understands. I just wanted to be left alone somewhere and close my eyes but I was lucky enough they were willing to listen and even encourage me. Just sitting, talking and being ‘presentable’ was hard at that point. When I went somewhere I was afraid I would collapse and not get home... In order to change your own brain you need some supportive brains around you. I had finally found an environment allowing me to recover. I’m still pretty much in damage control mode but it is getting easier and I am bound to break even one of these days because I understand the process I have to go through. I know the plan and I’m getting closer, even though I can’t imagine what it's like to have stereovision just yet.

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Tuesday, November 13, 2012

Session 45: What's next?

Since a few months I am able to keep eye alignment, so I can do almost every eye movement required. But in order to obtain healthy 3D vision you need to be able to sustain it AND switch between different eye poses in a split second. So my eyes need to move faster and more accurately. For the moment, when I am fixating on something a few inches from my face and then look at something more distant it takes like a second to readjust. The two images first wander around and then come together and fuse, but it's still way too slow. My eye muscles haven't always been so slow, not even while already suffering from strabismus. As a matter of fact in order for a strabismic to suppress the second image you need relatively fit eye muscles because it's a complicated process. In order to suppress your brain mismanages the eyes, but at least it's still doing some kind of management. If your eye muscles can't respond well to their orders from the brain, the brain just receives bothering images... My eye muscles have been severely traumatised by a well intended but misguided strabismus surgery. It set me back a lot of time up to this day. Not only had my visual brain developed incorrectly by lack of correct treatment, but surgical interference crippled fairly healthy eye muscles... However, I do want to say that a well performed strabismus surgery can be a good starting point for visual rehabilitation through Vision Therapy. That being said, crippled eye muscles respond to training however crippled they were. Everyday life is the training now along with the exercises and a lot of rest. My optometrist and I think it's possible but it's impossible to say how long it is going to take... Although I think the worst is over. Gotta keep pushing forward but not too hard :)