It has been very therapeutic to write it down for the first time so honestly. Just a warning: it’s quite long, but I hope this helps someone out there in some way!
I was born in the outback of Western Australia 37 years ago. In the earliest months of life, my parents noticed a turn in my right eye (strabismus) – in towards my nose. Only recently I was told my grandfather was also born with this condition, and we’ve recently noticed it in my young niece.
While I was still a baby, my parents took me to see an eye doctor in Perth, a few hours drive away. He was also a surgeon. I think he was reasonably progressive for his era, and very compassionate. I know that my mum respected and trusted him enormously. All I remember of him is that he put drops in my eyes that made them extremely light sensitive so he could do tests, that he would give me sweets, and that he seemed very kind.
I had several surgeries at a young age, an eye patch and glasses which I wore through most of my childhood. The result of all of this was pretty positive for me initially. My brain and body adapted. My eyes looked fairly straight – not perfect, but ok. I did well academically and musically at school. I could ride a bike and catch a ball, and although I wasn’t amazing at sports, I wasn’t noticeably bad either.
What we didn’t know then was that I was suppressing the input from my right eye in order to cope (although the “channel” was still open and I could see through it if I shut the other eye) and that I had no stereovision – no depth perception, no ability to see in 3D. I was using one eye for everything, and saw the world as flat.
So, things were all ok until I reached about the age of 11 or 12. Then, triggered (I believe) by the strain of an ever-increasing academic load, extracurricular demands like piano exams and performances, duties as a school prefect, sport training and so on, my eye turn became stronger and more noticeable. (Note: it might sound strange, but if there’s one thing I’m now certain of, it’s that my inner state and general health, very much effects how my eyes behave, especially stress and tiredness). As my teenage years wore on, and my awareness of my appearance increased, I started to loath the way I looked because of my eyes, and my confidence and self-esteem suffered enormously.
I remember being teased a few times by boys in high school about my eyes (I was probably 14 or 15). At that point in life, I found this utterly devastating. I tried to style my hair so that a fringe fell over my “lazy” eye, but again, this just meant that this eye became even less engaged and weaker, which made it worse.
By my late teens, I had left home, was studying full time at university, working most nights and weekends as a waitress to support myself financially, and living with a few other girls. All we did with our (very limited) free time was party. And all the late nights, lack of healthy living, and the stress of being away from family support added up. My eyes got even worse. Everything felt so hard. Any and all social scenarios become something to dread. I especially hated making any direct eye contact, sitting at tables with groups of people, having my photo taken, and meeting new people. The only time I felt happy was when I was wearing sunglasses, because nobody could see this terrible flaw, and I could pretend I was “normal”. In those moments hiding behind dark lenses, my entire character would transform, and it felt like bliss.
Then came the night I was in a club and much older, gangster-looking, mean-spirited guy came along and very publicly started ridiculing me – pointing, laughing and mocking – saying “look at your eyes, one is right over there” as though it was the most entertaining thing he’d ever seen. I can’t describe how deeply this wounded me.
Not long after this, to my great sadness, one of my grandparents passed away, and in the Will, each grandchild was granted a small sum of money. For me, it meant I now had just enough to cover the cost of an eye operation.
I did very little research. I just wanted a quick fix. Something to make me feel better about myself. I thought surgery was the answer. If only I could have looked into the future and seen how disastrous it would turn out to be.
The first surgeon I went to take said he would never operate on a case like mine because my eyes were within 5 degrees of normal alignment. I simply couldn’t accept this, and insisted that he help me find someone that would. Eventually he succumbed to my pleas and reluctantly gave me the number of another surgeon.
This one didn’t even flinch. We had a very short consultation and before I knew it I was in the waiting room preparing for the operation. I can remember sitting there and seeing a girl ahead of me, whose condition was so much more extreme than mine: both eyes were pointed in opposite directions towards the very edge of her face. It looked like her mum was leading her along because she could hardly balance herself to walk. I felt so sad for her and the suffering she must have endured, but still didn’t even consider for a moment that, in contrast, I might be overreacting to my own circumstances.
My next memory was waking up in the middle of the operation. I had a thread connected into each side of my right eye and the surgeon was standing above me, asking me to look at him and then pulling the thread to straighten it – I’m guessing it was the muscle – until it looked “right”. I have no idea if this is normal, but it was pretty traumatic. To make things worse, next to him was a young female student doctor, smiling and looking on politely as he flirted with her and talked about me as though I was a meaningless science experiment. I can’t describe how angry and humiliated I felt in this moment of incredible vulnerability.
The result was not good at all. In fact, things had become a lot worse. Now, instead of my eye subtly turning in and only being noticeable when tired or stressed, it was now permanently pointing much further in the other direction. It hardly moved at all, and I now had terrible double vision. The surgeon offered no rehabilitation, support or referrals to help me afterwards. He just sent me on my way to deal with the aftermath alone. Perhaps the saddest part was the number of people who told me they had hardly noticed any issue with my eyes before the surgery, but that now the turn was really obvious.
I was forced to face the harsh reality that I had just made a very foolish and damaging decision about my body that was driven by vanity and a lack of self-love and acceptance, which may be impossible to ever recover from.
I could not have known that prior to this surgery I was an ideal candidate for Vision Therapy – although I don’t think it even existed back then in Australia. It would have saved so much additional nerve and muscle damage, while giving me all the cosmetic and functional help I needed.
The rest of my twenties were pretty awful. My life probably seemed ok from the outside to others, but on the inside, I was increasingly riddled with extreme anxiety over every social interaction, and was deeply ashamed of my appearance. I obsessed over my eyes and never felt a moment of inner peace. I would wake up every morning dreading the day ahead, and I felt very alone with my struggles. I didn’t believe anybody else out there could possibly understand my suffering.
About 10 years later, I started looking for solutions again. By this time, Google was better organised, and the behavioural optometry industry had some more profile. And so, I discovered Vision Therapy.
My first attempt at Vision Therapy was while I was living in London. I had to cross the entire length of the city to get to my appointments, and the trip was about an hour and a half each way on the tube (subway). The travel and treatment were expensive, and it took a staggering amount of self-discipline to keep showing up, week after week, and doing the home exercises, day after day.
Things started slow, and it was hard, but I was so very, very hopeful, and I hung on. Upfront, there was a lot of training on gross motor skills that seemed silly, awkward and frustrating, and totally unrelated to my condition (although I now understand their critical importance). But I kept believing and working, and after a few months, we started on exercises that felt more closely related to my eyes.
I can still remember the time I was able to see the words on the line of a page from both eyes at once, sitting pretty close together, and I knew were making progress. Cosmetically, things were slowly starting to improve too.
Then, about a year in, I became pregnant with my daughter. I was very unwell with the pregnancy, exhausted keeping up my job and the commute to work, and I found it too much to manage the travel to the clinic, so I put the treatment on hold. After my daughter was born, I was consumed with being a first-time mum and my eyes were de-prioritised. I tried to keep up with some basic exercises, like the brock string, to maintain a bit of stability, but that was it.
A few years later, we moved to the Middle East (first Doha, and then Dubai) and my eyes really started to bother me again. I hunted around but couldn’t find anyone doing Vision Therapy, even at the big, flash “specialist” eye hospital in Dubai. In my first and only visit there, they almost laughed me out of the room when I mentioned Vision Therapy. The women I spoke to promptly informed me that in her university training, Vision Therapy was not considered a serious or valid treatment and that there was no evidence of success. As I’m sure you can imagine, I was infuriated by this haughty attitude and single-minded views on treatment options.
So, it was on hold again for a few more years until we moved to Malaysia. When we arrived, I was ecstatic to come across the awesome Stanley Tien at Sun Time Vision Specialist clinic. He was a passionate ambassador and skilled practitioner of Vision Therapy, and a Fellow of the College of Optometrists in Vision Development, regularly attending training and events in the US.
So, I jumped back in. Again, with a track record of surgeries like mine, where the muscle and nerve has been cut so many times, the progress is not linear, predictable, fast or easy. It is a long, hard slog, with many highs and lows, and it also dug up a lot of difficult emotions.
But in time, I got results. I was able to start to control the muscles in both eyes, to better use and move them together; feel more calm, steady and safe in my body and space; make eye contact with people more easily and be in social situations with far less anxiety and panic (like at the classroom door with other parents for pick up time, which I found incredibly difficult); and to get rid of the double vision that had plagued me for many years. And – believe it or not – I also had fleeting moments of 3D vision. Incredible!
We are still working on it, and I may never have perfect eyes, but the improvements so far have been more than worth it. And from this experience I am convinced that Vision Therapy has astonishing potential to heal people of all ages with a wide range of challenges.
In case this helps any parents out there, here’s a few things on reflection I wished that I had to help me along the way:
i. Better guidance, as a young person, on how to deal with adversity and handle my emotional reactions to my struggles, and help to realise that from these times of struggle can come real strength, courage, growth, and wisdom;
ii. A stronger grounding in myself of self-worth, to ensure it is not dependent on the validation of others, my appearance, or any other outer definition of value or success;
iii. An awareness and a trust that there are many ways to heal without cutting and damaging the body, and that the brain (and consequently the mind and body) has an almost unlimited capacity for rewiring, in so many ways, and at any age.
I will be forever grateful to all the professionals and researchers in this field, and for the many caring people who make up groups such as this one, which provide a safe and supportive place for people to come for guidance when facing these difficult challenges and decisions in life.
Wishing you all much courage, compassion and success in your journeys of healing with Vision Therapy.
Ms.J , 11 September 2017
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