Friday, September 23, 2011

Cry for help

In the summer of 2011 I was going to graduate. As any graduate has a 'what now' moment, mine had announced itself well in advance and it was not going to be pretty. I always knew this disastrous scenario was going to present itself and warned my family saying  'Even if I manage to graduate like this, it is not going to be okay'. But their understanding was a luxury I was not going to earn easily. One year earlier I had found out about optometry and vision therapy but after 8 months of training a solution was nowhere in sight. I wrote a long e-mail with my personal eye history to 'Fixing my gaze' author Susan Barry which I will attach to this post. Her answer was helpful, supportive and confirmed everything I had learned so far. It was going to take a lot more patience, rest, will power and lots of time.

Let’s start at the beginning… I was born on 17 December 1989. Then at the age of three I started being cross-eyed (horizontal deviation), also I was experiencing learning difficulties in nursery school. So they started doing batteries of tests to figure out ‘what is wrong with me’. Their conclusion was that I was  long-sighted and they would try to fix the strabismus applying eye patches to reactivate the lazy (left)eye. In addition they prescribed me some +3 eye glasses. My learning progress more or less caught up, even though lasting problems with out loud reading. I remained to be a slow reader but at least I would not lose my concentration as fast as before… The glasses corrected the strabismus to some extent but the ability to coordinate my eyes and having 3D vision was permanently lost. Corrective surgery was never mentioned by that doctor.

This way the situation was stable until 2006. I kept wearing my glasses, feeling there was something latently present that was bothering me but not sure what it was. In 2006 I went on my yearly ophthalmologist visit to check on my eyes. It was a new eye doctor in the same practice and he started talking to me about the possibility of corrective surgery. I was 16 at the time and I’d liked to have better eye alignment, but was not really informed about the risks involved. I agreed. The operation initially appeared to be a success: wearing my glasses the squint was barely noticeable. I was not experiencing apparent double vision. All I had to do was to wear the glasses and everything would be ‘fine’. On another note, because of increasing study loads and the slow reading issue I shifted branch of study in my high school from ‘Economics, Mathematics’ to ‘Economics, Living languages’. This has postponed upcoming problems, looking back on it.

In September 2007 I started studying Economics at the university of Leuven even though my arrears with regard to mathematics. Increased study pressure led to having to study every day quite intensively, straining my eyes for hours. This had two simultaneous effects. Firstly I started to hold my hand in front of my left eye because I had trouble focussing. Sort of starting latent double vision. This combined with stress, obviously, caused me to scratch my face with all its consequences for my skin. Secondly,  my long-sightedness was getting better by ‘training’ my eyes meaning that my glasses were getting too strong in relation to my eyes. I had a harder time trying to read black boards or just far away objects in general. So I went for less powerful glasses and tried lenses for a while. Changing the position and the angle my eyes and my brain were accustomed to. My left eye was also getting ‘reactivated’ or ‘less lazy’, according to my personal experience.  I now only had like +1 at both eyes. I started seeing my nose in combination with photophobia (sunglasses were often necessary). Both conditions made me extremely miserable.   In short, at the end of my first year of university my eye situation had changed dramatically.
 October 2008: After consulting my eye doctor, we decided that the only way out of this deadlock would be to take a chance and undergo a second strabismus operation. (Which I should not have without consulting other doctors or optometrists for that matter, but I was desperate to get out of this ‘nose vision’ situation.) I woke up in a far worse situation. I had gone from being slightly cross-eyed to being wall-eyed. I had way less power over the coordination of my eyes, making me very insecure in my movements and making it impossible to read without occluding one of my eyes. The operation even messed up the vertical alignment of my eyes which had never been deviating vertically before. The major problem is that patching one eye gave me tremendous headaches while studying. But I had no choice if I wanted to complete my year, so I carried on doing this. Studying was literally painful. I used all sorts of remedies to alleviate the pain (drinking wine while studying, putting ice on my head, paracetamol, chewing coca leaves…)  It is needless to say I reached rock bottom. I have considered ‘escaping’ several times, if you know what I mean. Me and my parents started seeing other specialists in the meanwhile. Most of them were sceptical about the possibility of improving my position by operating again. During the exams in June 2009 I started to experience more problems: I felt like my left ear was getting increasingly stuffed. I had no time to go to the doctor because of the exams, the only thing I did was apply pressure on my ears till it finally ‘popped’. Feeling liquids coming free I slept with that particular ear down, discovering the next morning blood had dripped out of it. This episode is to be continued, because my ear/ jaw still didn’t feel right.
One physician truly believed he could help me and I let him convince me. In August 2009 I got operated on my eyes for the third time. Given the circumstances, he did a good job. I still have double vision but I have more control over my eyes. So if I am looking at something holding my eyes in the same position I can keep it that way and quite effectively shut out the second image for a limited amount of time. The problem is, yet again, the reading. Because this includes a lot of left right movements which I can’t execute properly holding my eyes in the same angle making it impossible for me to shut out the second image. A big improvement is that I don’t have to patch my eyes every time I want to read something. I still have problems having a short concentration span and having to hold my hand beneath to my left eye to suppress the second pair of letters I see. But overall, have my eyes improved since before August 2009. This brings me to my ear/jaw problem. The previously mentioned full ear never really recovered to its previous state. It feels different inside, compared to the other side of my face. The specialist I saw for this told me this is caused by excessive muscle straining around my jaw, which sounds like a logical explanation. I went to a physiotherapist to relax the muscles, but this does not really help me permanently. It always comes down to the eye problem So at the beginning of this academic year (2010-2011) I discovered about vision therapy thanks to the book ‘Fixing my gaze’ by Susan Barry and some websites. I went to an optometrist in Antwerp (Berchem) named Guy Naegels. He wasn’t really hopeful about the chances of success but agreed to take me on for some training sessions. I’ve been going there since November last year and have completed 25 sessions. I’m not sure whether I’m making a lot of progress but there is definitely an evolution in my vision. I will try to describe my experience. My gaze has been somewhat steadier and individual eye tracking movements have improved over time... Although the major problem remains to be the fact that when looking right or left the angle in which my eyes are positioned changes, making the second image move in comparison to the ‘main one’. That’s why my brain can’t get used to the situation, I guess. This results in a very confusing and nerve-racking perception, especially annoying while reading. Every ten training sessions I had a check-up to record my progress. The measurements show that my angle is decreasing and I feel like I am starting to have fusion of the two images every so often.
As far as fusion is concerned, I do believe I have fusion at certain particular moments melting the two images. Using the green and red glasses in combination with the green and red transparent sheets, I can make stuff into one although I’m not completely sure I’m seeing the right thing. Half of the figure is still red and the other half is green, and I cannot sustain the view very long. My peripheral fusion seems to be better than my central fusion. Attempts to enlarge my range of fusion have been rather unsuccessful up until now. Very short distance is hard or even impossible as well as long distance, medium distance works better. It has to be said that aside from being in therapy I have been studying on a very regular basis inducing my suppression system (as far as it still functions) meaning I might have undone my efforts to achieve fusion to some extent by straining my eyes. I plan to take on a rather physical job for the year to come, giving my eyes a chance of relative rest and visual exercises. The situation you described in your book reminds me of the time I was still able to suppress the second image.  I was reasoning since I already saw the second image I just have to be able to bring them together, so I figured I was already half way. I just hope the relatively recent dates of the operations didn’t mess up the actual agility of the eye muscles. Individually my eyes can assume any position, even though the joint coordination habits seem to be hard to break. Not being able to freely live my life because of the limitations double vision brings along, is literally eating me away. It was hard enough to have my academic performance smashed to pieces, but now having to start to work I feel very constraint option wise.  I’ve been losing weight for a few months now and am losing hope for the future. If some things are unclear or you need more specifics, I'd be more than happy to provide them. I would greatly appreciate any advice you could offer me! 
Respectfully yours,
Michael Lievens