My eyes: Living with strabismus

27 09 2020

Warning: Very long post, and likely only relevant to those with an eye condition called ‘strabismus’. I wrote it to document my life living with this eye condition, and to provide background information to my ophthalmologist. I am NOT involved in the medical profession, and this is NOT a medical column. Please see an optician or eye specialist for anything to do with your eyes.

For more information on strabismus, see:

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Something’s wrong

I was raised in a small Western Australian country town. Everyone in the town knew pretty much everyone else, and because we were the only bakers in town, my family knew everybody, including all the teachers. At school, my best friend and I vied for first and second spot in the class throughout our entire primary school lives, and fittingly, after such a long rivalry, shared equal dux of the school at the end of Grade 7, our final year of primary school. I turned 12 that December.

The reason I mention my class position is that one of my teachers in the latter years of primary school sat the ‘bright kids’ at the back of the room, where we could get on with our work relatively unsupervised while he kept a close eye on the ‘naughty kids’ that he seated at the front of the classroom. My memory of this is a little hazy, but it seems there was a relief teacher and I’d left my seat to go closer to the blackboard to read what was on it and I got growled at. Mum says she’s pretty sure that I complained about getting into trouble at school (I NEVER got into trouble… yeah, I was that kid) and asked me why. She talked with my usual teacher and realised that my eyes might need checking.

Early testing

We lived a good hour and half’s drive from Perth, which is where the optician that my parents and grandparents used had his rooms. Whoever I saw said that he couldn’t do much for me until I’d seen a specialist (I presume an ophthalmologist). And so began the long trek to and from Perth, every Tuesday I think. It seemed like it went on for months, but as a kid you have no sense of time, so it might have only been a few weeks or even just a couple of visits. I can’t recall much of which specialists I saw or what was discussed, but I clearly remember having several sessions with an orthoptist. Why do I remember those visits? Because, among other things, I had to put birds in cages and they kept jumping out! Let me explain… One of the instruments the orthoptist used at that time was something that enclosed your head and that you peered into. Everything was black except for lit outline images of a distant bird and a cage—possibly one image for the left eye and one for the right, though I can’t recall the details. I had to hold onto some controls and adjust them until the bird was in the cage (i.e. combining the two images my eyes were seeing into one). I’d do that, the orthoptist would record the result, and then seconds later, the bird would be outside the cage again WITHOUT ME TOUCHING THE CONTROLS. My eyes couldn’t settle and hold that image, and I’d have to do it again. And again. And again. I’m sure there were other tests too, but I clearly remember putting that damned bird in the cage and it jumping out again!

After all these tests, someone at some point said I needed to have an eye operation. I doubt I was part of that discussion, but as a kid of 11 or 12, that’s not surprising.

My first eye operation

No-one really told me what was going to happen in surgery—it was something vague like ‘stretching the muscles on the inside of the eyes to match the strength of the muscles on the outside of the eyes’. What my young brain processed was that my inner eye muscles were too strong and would ultimately result in me becoming cross-eyed, and that’s why they had to do the surgery. I hadn’t noticed any crossing prior to the surgery, but it was explained to me that this is what would happen if they didn’t operate. What I learned much later was that the operation was cosmetic more than anything—it was a way for my eyes to look ‘normal’, but the vision pattern was already set in my brain.

I have no idea who the eye surgeon was, but I recall it was done in the old St John of God Hospital in Belmont (in Perth). And this bit I don’t recall at all, but Mum remembers it clearly and thinks it’s the source of all my fear of anything coming near my eyes and of eye surgery—Mum said that when she and Dad came to pick me up, I told them how frightened I’d been before the operation because I was left alone in the operating theatre, wide awake, for some time prior to people coming in and then going under the anaesthetic. No doubt the big light was on, there were stainless steel carts and trays of instruments, and all the paraphernalia of an operating theatre—scary stuff for a kid from the country!

I recall coming out of anaesthetic and vomiting several times and having a really sore throat (tube down the throat?). My head and eyes were heavily bandaged, and obviously I was blind. The nurses (nuns?) expected me to be able to eat the jelly and ice cream with a spoon, without helping, so you can imagine what that was like. But my biggest memory is of being blind and in the bandages, and alone. I don’t know how long I was in hospital all bandaged up, but it felt like a month (it was probably only days). Mum and Dad lived too far away, so they didn’t see me again until they came to pick me up. Of course, I couldn’t read (my great love at the time) or do anything at all so I just lay there in the blackness. I do remember a song on someone’s radio, and if I ever hear it these days, I’m taken straight back to that time and place.

After the bandages were removed, I was a mess. My eyes were red and bloody for months, and the bloodshot look (so pretty… NOT) didn’t die down for a year or two. I had lumpy stuff on my eyeballs on the inner corners of my eyes, likely where the cuts had been made. I had to wear really strong sunglasses everywhere for a while (weeks? months?), even inside the house and in class. When you’re almost a teenager, you remember this stuff—people stare at you because you’re different (who wears sunglasses inside? why are your eyes always red?) and so I have clear memories of this.

Family history

I now need to segue a bit into family history. Strabismus is believed to be familial—it runs in families, but not everyone gets it and not every generation gets it. With corrective techniques applied early enough, it can be treated and forgotten about, though it’s possible you may still have to wear glasses for the rest of your life. So where did mine come from? Likely from my paternal grandmother, Nana B. But her strabismus wasn’t obvious until she was much older. She wore glasses all her life and I recall that one lens was very thick at the bottom and the other very thick at the top, no doubt trying (vainly) to correct her double vision. By the time she was in her 80s, her strabismus was at the point where one eye would look at you while the other was looking towards the ceiling—it was a bit disconcerting! She never had any corrective surgery, just her glasses, but that was a product of the times and places she grew up in more than anything else. By the time I had my operation at 12, she was deemed too old (at 64) for a similar operation.

Now, because strabismus runs in families and because it CAN BE CORRECTED NON-SURGICALLY if caught early enough, it’s vital that children are tested early on, preferably before they turn 3 and at the latest by 5 or 6 (see the links above). With strategically applied patches and/or glasses, most instances of strabismus can be corrected if caught early enough. However, by the time a kid reaches teenage or adult years, surgery may be the only option and it’s not guaranteed to correct the vision, just the cosmetic straightness of the eyes. (Again, check the links above and consult with an optician or ophthalmologist—I am NOT a medical person.)

Life with strabismus

So, what was (and is) it like living with strabismus? For many things, no different to anyone else. But for some things, there were a lot of differences, many of which were because my eyes and brain processed images differently to other people. I only realised this in my 40s when I worked for a 3D software company and did a lot of research into how people see. When that light bulb came on, everything just clicked. So many things that I had struggled with all my life suddenly made sense and could be explained by my wonky vision (not a technical term!). What the articles linked to at the beginning of this post don’t tell you is how everyday things that other people do naturally just don’t come naturally to you. And when you’re a child, this can result in bullying, name calling, or just exasperation by you and those helping you that you can’t ‘get’ how something is done.

Some of the characteristics/symptoms of strabismus that I’ve had all my life include:

  • double vision (in my case, one strong image and a ghost image above and to the right of that strong image)
  • compromised or lack of depth perception
  • compromised or lack of binocular (3D) vision
  • compromised or lack of distance perception
  • motion sickness as a result of motion parallax (might also be known as optical flow), such as looking out the passenger side window of a car when it is in motion, or trying to read in a moving car with the landscape flicking by fast at the corner of your field of vision, or viewing an IMAX theatre movie! (seriously, I can’t do that—I had to walk out of one because I was so disoriented I was close to throwing up)

In real life, these vision issues manifest in all sorts of ways. (Note: Not all these situations may be JUST a result of my vision, but my vision would play a part.) For example:

  • Sport, particularly ball games, was (and remains) a horrible experience:
    • I need to state up front that my family was never ‘sporty’—we didn’t follow sport, we didn’t play sport (though my parents played social tennis and golf at certain points in their younger lives), and sport wasn’t part of our extended family’s lives either. However, I had to play ‘sports’ at school, and I also played netball outside school as a kid and teenager; I suspect I was forced into this, because I certainly didn’t want to play.
    • I was crap at netball. So bad that when my girlfriends were playing A and B grade netball, I was in D or E grade. I was useless at catching the ball, let alone making a shot for goal, so was always relegated to the least useful defence position where I could do the least damage. I was called ‘butterfingers’ often because I couldn’t catch a ball coming through the air (depth/distance perception + double vision = two balls + two sets of hands = something isn’t going to work). I have a wonky (broken) little finger and a wonky nose to show for it to this day. The end of school meant the end of netball, thankfully.
    • One other sport I ‘played’ at school was golf. I came home after the first time (I think I was about 13) and Mum asked how many I hit. I said 33… on the first hole! Then she asked if I’d included the ones I missed. I was horrified! You had to count the ones you missed too??? Needless to say my golf career began and ended badly. Why? Because when you have bad depth perception and double vision, you really don’t know where the ball is on the tee or ground in relation to the club or your body. I replaced lots of divots and dug the ball out of the ground numerous times. And there were innumerable ‘windies’. Because golf wasn’t really supervised when I was in the later years of high school, I just took the opportunity to use it as an excuse to go for a walk and chat with friends.
    • In later years I was asked at various times to give tennis, squash, volleyball, and sailing a go, purely social of course, and often with work colleagues, despite my protestations that I was useless and could I serve the drinks instead? I loved sailing and volleyball wasn’t too bad. But tennis and squash were complete disasters. With tennis, a small white (later yellow) ball coming at speed against a blue sky trying to meet the sweet spot on a racket just didn’t work for me. Again, I could see two balls, two rackets, and had NO idea of where the ball was in time and space, so there were lots of misses or hitting the ‘wood’ of the racket (including during serving). I had better luck with a tennis ball coming off the ground (including for serving), but no-one wants to play ground strokes all the time. Squash was a complete disaster and I only attempted it once or twice. This time, a TINY TINY ball at superfast speed bouncing off white walls—my eyes couldn’t cope and I had no idea where that ball was.
    • In later years, I’ve played pool with my husband. He’s good and I’m not, yet still he perseveres. I can line up a shot, I can see the angles, I can see where the cue needs to hit the white ball to achieve the desired result. And then I execute. Invariably I’m a degree or two (or more) out of alignment and the shot certainly doesn’t go where my brain told me it should go. Occasionally I fluke it, but most of the time (80% or more) my shots are wayward.
    • In summary, I had years of horrible ball game experiences, but at the time I had NO IDEA that my vision might be contributing to my hatred for sport. I just thought I was useless (as I was told by other kids often enough). Aside: If you’re a teacher, especially in primary school, NEVER get kids to pick their own teams. Kids know who they think of as useless and we’re always the last picked, and often with comments that we overhear such as ‘we don’t want her on the team, she’s got butterfingers’, ‘she’s a klutz’, ‘she can’t catch’, ‘do we have to have her?’. Teachers must hear these comments but do nothing about them. It is cruel in all respects, and certainly doesn’t do the unwanted person’s self-esteem any good at all.
  • Heights and open spaces at height are traumatic:
    • Where do I start? Let’s start with open stairs, particularly metal stairways with metal mesh treads, open air for risers, and open metal handrails (or no handrails) whether inside or outside (though outside is worse). Bad depth and distance perception means that going up a flight of open stairs is particularly frightening. I can usually make one flight to the landing without a problem, but about halfway up the second flight, I start to ‘freeze’ and have to use every ounce of mental will to get up those last 6 or so steps. I have ‘frozen’ many times on stairs like these, and if you’ve never experienced your body ‘freezing’, I certainly don’t wish it on you. What happens is that your hands grip the handrails so tightly you can’t open them—and nor can anyone else. And your body stops and starts to go into a sort of paralysis, whereby you can’t move, no matter how much (logically) you might want to. Eventually (it could be seconds or minutes), your brain starts to release the muscles and you can make it those last few steps. But not without a lot of trauma and exhaustion and a promise to yourself to never do that again. And that’s just one set of stairs—if there are two or three stories of open stairs, then I’ll leave because I just can’t do it.
    • Glass elevators inside or (worse) outside a building. Nope. If there’s absolutely¬† no other choice and I really want to do this, I’ll go inside the elevator and literally hug the only solid wall and shut my eyes tight and fight off the mental demons. I’ve also been known to tell complete strangers that I’m terrified and that’s why I’m hugging the wall. That said, I’ve discovered over the years that I can turn around very slowly and look out from my position on the back wall as long as I look straight out and never down. It’s still traumatic. I consider going up the CN Tower in Toronto (twice) a major achievement, albeit hugging the inside wall in the external glass elevator as though my life depended on it. Again, depth/distance perception + speed of the elevator throws my perception out. I’m OK in fully enclosed elevators where I can see four solid walls and a roof—it’s the glass ones I have trouble with.
    • Ski lifts, chair lifts, gondolas. I’m slowly getting better with some of these, but I still can’t go on an open chair lift of any sort (see open stairs above). I can do an enclosed gondola/cable car, but as long the sides are high enough that I don’t feel like I’m falling, there’s a seat to sit on (e.g. Christchurch, NZ; Sulphur Mountain, Banff, Canada), or the gondola is big enough that I can keep well away from the windows if standing (e.g. Palm Springs, California).
    • Escalators. I’m OK on escalators and travelators, likely because there’s a handrail and half-walls on either side that make you feel relatively enclosed. That said, I have trouble getting onto either—that moving step thing with all those lines means I have to stand and watch for a few more seconds than most when getting on one. And then my first step is tentative, but once I’m on it, I’m fine. Again, depth and distance perception at play here.
    • Rides at theme parks, fairgrounds. I’m fine on a carousel or a Ferris wheel, probably because of a combination of these: they either go slow, have a predictable rhythmic pattern, I’m enclosed or I have something to hold onto, I can see the horizon and can look out not down. But any other sort of ride or roller coaster, particularly a fast or spinning one that disorients you? Nope. Just a BIG NOPE. My first experience of one of these was the Wild Mouse at the Perth Royal Show when I was about 17. It was so traumatic I still remember the name of it! I collapsed on the ground once I got off and couldn’t move for some minutes. I vowed never to do anything like that again. Fast forward to my 30s and I was in Los Angeles with my husband. We were at Knotts Berry Farm and we’d got there early so he could ‘do the rides’. I’d told him a long time before (and reminded him then) that I didn’t do rides, but he insisted I wait in line with him for Montezuma’s Revenge (yep, I still remember the name of that one too). Unfortunately, once you’re in line and get to the end of it, you can’t go back and there’s no way to get to the exit platform on the other side of the cars. I had to go on the ride. I’ll spare you the details, but that 90 seconds was the most terrifying of my life. When we got off, I literally collapsed and had to be carried to an area aware from the eyes of those waiting to get on the ride. The ride staff wanted to call an ambulance for me, but after sitting on a bench for half an hour, I was OK, though still traumatised. I think my husband had bruises on his arms where I had grabbed him, for weeks! Suffice to say, he’s never asked me to go on a ride with him again, which suits me just fine. My disorientation on rides is severe.
    • Tall buildings/skyscrapers. I’m fine working on the 30th floor of an office building, provided I’m not right up against the window. Looking out is OK, looking down is not. I’ve been to the Top of the Rock (Rockefeller Centre in New York City) and once I saw there was a big parapet wall on the outside level, I was OK going out there. The CN Tower in Toronto was another story, though. Back in the day, you stepped out of the elevator onto a carpeted floor that went straight to a floor-to-ceiling wall of glass and disappeared into nothingness—needless to say, I hugged the solid wall all the way round! I wasn’t going anywhere near that window. Again, I could look out but not down in any way.
    • Rock crevices and open gaps. I recall an incident when I was about 16. We went up to Kalbarri in Western Australia, and my parents and sister and I went clambering over the massive rock platforms at the base of the red cliffs (at Red Bluff?). I was fine, running over the rocks, jumping over the crevices between them; fine, that is, until we had to come back. Somewhere in my brain I must have registered that some of the crevices I’d leapt over dropped down a long way to the ocean. Yep, I froze on a rock near one of the crevices! I was stuck like a limpet, and no amount of verbal cajoling or physical means could get me to move. Dad tried to prise my hands off the rock but he couldn’t budge them. He didn’t know what to do, and I doubt he’d ever seen that before; I doubt any of them had seen it and I think they thought I was playing some sort of prank. Eventually, my brain must’ve told me that I’d jumped over it on the way out without issue, so it must be OK to jump over it on the way back too, and released the muscles holding me in place on that rock. But I didn’t go back over that crevice—instead, I walked up high on the rocks to avoid it altogether. I guess the old depth and distance perception was at play here too. Another thing about this ‘freezing’—you cannot do anything, you can’t move, you can hardly even talk, and you have no control over your body. It’s horrible.
  • I can’t see in 3D:
    • I have some binocular vision, but I don’t see like others do. I’ve now worked for two software companies whose main product was 3D software! One converted 2D movies to 3D; the other created 3D images of geological data. I was the only person in both companies who couldn’t ‘see’ the 3D effects. One time at the 3D movie place, the content converters had worked on a section of a movie and were very proud of what they’d done with the 3D rendering. All the staff were invited into the screening room where they all put on different types of 3D glasses. The content people proudly showed off footage of this massive golden ball (spacecraft?) coming through the darkness and supposedly into the mini-cinema. Everyone gasped and moved back as the ball rolled over them, and tried to touch it. And I couldn’t see it. I could see the ball and saw that it got bigger on the screen, but I couldn’t ‘see’ it come into the room as the others could.
    • It was while I was working at that 3D movie conversion software company and realising I couldn’t see 3D that I started to research how people see, and importantly why some people, like me, don’t see things in 3D. As I said earlier, I was in my 40s when I discovered that what I had was called a strabismus (that’s the first time I think I heard the word), and as I researched some of the symptoms and characteristics, suddenly everything clicked into place. It was the first time that things like not being able to identify a fast yellow ball coming through the blue sky because there are two of them and two rackets, made sense. I ended up only working at that company for 6 months or so, but my time there was an epiphany for me. Finally, I had an explanation for why some things were so hard for me, and had been for all my life; things that others took for granted and who got frustrated with me when I couldn’t do them (yes, I got frustrated with myself, too!)
  • I use other visual cues and glasses to make sense of my place in the world:
    • Despite not being able to see 3D effects, I must still have some binocular vision, though my time at that 3D movie software company made me realise that I’ve been using all sorts of other visual cues all my life to make sense of my world and to compensate for the aspects that are lacking. For example:
      • I know that a person has a rounded shape, because I’ve hugged people.
      • I know the shape and dimensions of a vehicle because I’ve driven one and washed one.
      • I can see cars when I’m driving without any problem—I just see two of them (well, one main one and a ghost image for the other, so it’s not two complete images)! Driving during daylight hours wasn’t an issue with my strabismus because of all the other cues I use subconsciously, like how far objects are away based on how things meet at a point on the horizon (vanishing point) and therefore an itty bitty car on the horizon is further away than a much larger vehicle not near the horizon.
      • Night-time driving? I avoid that where I can because I have few other visual cues—high beam is a necessity, where I can use it. Headlights are dazzling because I see four of them when there are only two.
      • Hitting a tennis ball that bounces off the court isn’t too difficult because intuitively I know how tall my body is, how long my arms are, where the line markings are in relation to my body, and because there’s more contrast with the ball against the background of the court than there is against the sky.
    • Glasses. I think I’ve tried them all! I’ve had prism lenses, half glasses, multifocals, bifocals, glasses for distance (more recently as I age), and magnifying glasses for close work (again, more recently as I age). I’ve always had at least two pairs of glasses—clear and sunglasses, and as I’ve got older, I now have magnifying glasses scattered all over the house for computer work, sewing, quilting, reading, doing crosswords, checking things on my tablet, watching TV, etc. All have improved my vision somewhat, but none have totally corrected the issues with my sight—double vision is still an issue, as is the depth and distance perception stuff, but as I said, I subconsciously use other visual cues to help me with that.
  • Tiredness makes the double vision worse:
    • Watching TV. Watching TV with me is interesting! As it’s something I do at night, I tend to be tired, and a comfy chair puts me well into sleepy mode. Even when I’m alert I can’t watch TV sitting straight and upright in a chair. If I’m on a sofa, I’ll be semi or fully prone on one side and watch TV sideways. If I’m in a chair, I’ll screw my body round like a pretzel, twist my head on an angle, and watch TV like that. If I’m getting tired, I’ll close one eye (usually my right eye). Why? Because the more tired I am, the greater the separation of the two images I see. If I’m very tired, I’ll have the main image of the 55″ TV in one position, and the ghost image totally separate from it (not overlapping at all), way off to the right and slightly above the main image. By closing one eye, I only have one TV to watch.

Other eye surgery

My first eye op was when I was 12. The next was a five years ago when I had a blepharoplasty to remove some of the excess skin from my droopy eyelids; see https://rhondabracey.com/2015/07/16/eyelids-before-and-after/

Then in July 2020 I had cataract surgery (see: https://rhondabracey.com/2020/07/04/cataract-surgery/), with Toric lenses used (these are meant to correct astigmatisms, to a degree). My initial response after surgery was how bright and clear everything was, and yes, I could see distance stuff much clearer and without glasses. However, I had some smokiness above everything I saw, especially from my right eye, but I had to wait 6 weeks before I could see the optician (this allows time for the eyes to settle after cataract surgery).

Six weeks after the surgery, I went back to the optician to see if I needed new glasses (I believed I did for distance as the smokiness seemed to be getting worse and was compromising my ability to see clearly in heavy or fast traffic situations, under some circumstances). I was his problem child! I don’t know how many lens combinations he tried, asking ‘1? or 2?’ and getting ‘they’re both bad’ from me, especially for my right eye. Eventually, he decided on a combination he was happy with. The glasses arrived 2 weeks later and I put them on in the store. My first reaction was that they didn’t work and seemed to make my vision worse (especially in the right eye) than without the glasses. I was advised to ‘try them for a week’ and come back if they still didn’t work. I went back and the eye tests done by the optician the second time showed that my vision had got worse since he tested me only a few weeks earlier. He told me he couldn’t do anything more for me and I would likely need a laser procedure done and referred me back to my ophthalmologist. The degree of deterioration was such that my eye doctor saw me within a week (the original appointment was for January 2021!)

Guess what? I’m one of about 20% of people who have issues after cataract surgery, where the vision becomes cloudy and fuzzy. There’s nothing wrong with the new lenses—it’s the capsule holding the lens (the eye doctor likened it to cling film, and in some people the cling film becomes like bubble wrap). This cloudiness can occur anywhere from weeks to decades after the surgery, or, in most cases, not at all. In my case, it was probably days. Instead of the double vision I used to have (main image with a ghost—almost outline—image above and to the right), I now have a different type of double vision, where everything has a main image and a smoky image directly above it. I’ve tried to draw diagrams of how I used to see with just the strabismus and how I now see after cataract surgery.

How I saw any object with strabismus: There’s a main image, then to the right and above, there’s a ghost image of the object

How I see the same object after cataract surgery: The main image is clear, but it has a smoky image immediately above it. This is fine for one object, but now think about that with multiple cars on the road, all moving at speed, and all with smoky duplicate images

Representation of how I now see an eye chart without glasses (right eye mostly). There’s the main line with quite a bit of smokiness and blurriness, and a duplicate line above it with much more smokiness. Yes, even with one eye closed I have double vision out of the other.

The eye doctor did all sorts of tests, some of which I’d never done before. I also told him that my left eye was now exhibiting some of the same smokiness, though not to the degree of the right. After doing all his tests, he said that it likely could be fixed with the laser procedure (YAG capsulotomy), and that he’d do both eyes right then (this was last Thursday, 24 September 2020).

The procedure took just minutes, was totally painless, and I could resume normal activities immediately afterwards. The lifting of the cloudiness is expected to occur after 24 hours. But as usual, my eyes want to do their own thing!

Update: 24 hours later and my vision was perhaps marginally better, at best (that could have been wishful thinking).

Update: 48 hours later, and there’s still no change.

Update: 72 hours later, nothing’s changed—the smokiness is the same as it was before the laser surgery.

My next appointment with the optician isn’t for another month, and the follow-up appointment with the ophthalmologist isn’t until early December. I hope I’m just a late bloomer and that there’s some improvement in my vision by then. And I need to remember that I’d used compensatory techniques for decades to live with my ‘old’ eyes—perhaps expecting instant change is just wishful thinking and over time I’ll develop new compensatory tricks to deal with how I see the world.

For me, cataract surgery might have solved some issues with my vision, but has created others. This saga continues… I’ll update this blog post if there’s any radical change.