Friday, March 27, 2015

Two Years Deep

Two years ago today I had surgery to align my left and right eyes, removing my double vision and giving me, for the first time, the ability to perceive stereoscopic depth ie, 3d vision. This blog serves as my attempt to describe in words the incredible change this surgery has been for my vision, for my quality of life, and for my experience of the world. My surgeon mentioned to me during a checkup visit that since they are not able to directly experience the outcome of their work, surgeons like herself are voyeurs, dependent on other peoples' experiences to understand what a surgery like mine really means. I've been told by many that my descriptions of life after surgery helped them appreciate something they took for granted, the ability to see in three dimensions and across the full field of vision. I also figure there are people like me who are considering doing this surgery, and crave intel on it. Scroll down and you'll find a bunch of posts from the day of surgery and weeks after, when I was compelled to try and describe this incredible experience. The posts died off after things started to normalize a few months later. But for myself, my friends and family, my surgeon and anybody else who finds this blog, I thought I'd chime in again now that some time has passed. Bear with me, this is going to be a long post, but consider it my version of Netflix releasing a whole season of TV at a time. You can parcel it out, or you can binge-read!

So, how do things look after two years?

TL;DR: Pretty damn good. They look pretty damn good indeed.

3D Delights

I am now a citizen of a voluminous world, an expat from the land of the flat. I no longer have the wild hallucinatory experience with depth I described early on. A slice of bread doesn't quite look like the Rocky Mountains anymore. Busses don't feel like they're going to tip over on top of me when they go by. And that's a good thing. My early experience with depth was truly wondrous and remarkable, but I certainly wouldn't want that to be my daily experience of the world. I would be jumping out of my skin at every turn, distracted to hypnosis by a nice head of hair or an approaching car. My experience of depth has indeed receded, to the point where I often don't think about it. I just do my thing and count on it being there without needing to focus on it. My brain uses its naturally exceptional filtering ability to pay attention to it more at some times than others, depending on the situation.

And this has revealed itself in interesting ways, like my now instinctual ability to catch a ball. Before surgery, a ball hurtling toward my face came with all the stress of an onrushing Ferrari. I would blink rapidly and struggle to keep my head from shaking. Having two fast-moving balls to deal with back then, my eyes would dart around and I would kind of freak out a little bit trying to figure out which one to concentrate on.

Now, post-surgery, a ball might come my way and I just ... know when to reach for it. It's not 100% accurate of course, but it's a dramatic improvement, and in some sort of spidey-sense way that requires no deliberation on my part. Last summer while hanging out in the backyard I made up this game for myself to pander to this new simple and irresistible joy. I'd take my daughter's kid-size (10") soccer ball, and through it as high into the air as I can with my left hand. then try to catch it with my right. I throw it up with my right, and catch it with my left. If I miss it I have to do 5 push-ups. Rinse and repeat. I could fill hours relishing this simple act with a pure childlike joy. Throw. Catch. Throw. Catch. I can't wait to play catch with my daughter, she's almost old enough. In the meantime I crave a warm summer day, to track that ball through the sky, spin around on my toe and catch it without really looking at it. It makes me feel like a goddamned superhero. I can hit a baseball pretty well now too. I'm dying to try the sports I used to avoid like the plague. Anyone for tennis?

My experience with crowds is another place where I still really notice the upgrade. Recently I went to the Extreme Beer Fest with my fellow homebrewers Sully and Aaron. It takes place in a large conference center, and is comprised of 30 or so brewers offering their oddest and most experimental suds to folks who paid to come and sample. The place was packed with people, in clusters or in lines or wandering around. And not once did I feel overwhelmed or even fazed by the masses, like in the old days. I took pleasure in keeping up with my friends, spotting them in the room, snaking and feinting through the crowd. Depth helps me see the voids - the places where people are NOT, thereby giving me clear direction where to go while I'm moving. Before, the people would appear much more packed on top of each other, like an unorganized mess of stickers on a school notebook. Now it looks like a scatterplot, empty space with stuff filling it up.

I am more comfortable running. I can turn my head to the side while I run without feeling like I'm going to fall over. I can take in the whole scene around me, innately understanding where objects and people are in space, and just relax into my environment. Things go on around me and I'm part of it.

I admit that sometimes I am a bit sad to have lost the wild visions of the early days, but I can get my 3d rocks off with my Google Cardboard any time I want. But honestly, I only play with it once in a while. I do like going to 3d movies, and am excited about the promise of future virtual tech. Part of why I like it is that it's not perfect yet, so the sensation is exaggerated, much like my first weeks after surgery.

Widescreen Dream

The elimination of double vision remains as significant a change as depth perception. I am not confronted by conflicting images every time my eyes are open, seeing the world through a narrow portal. My single broad hemisphere of vision draws me in, making me feel integrated with my surroundings in a way I didn't before. I can cast a wide gaze, taking in everything in the room, my brain making quick assessments of what to focus on.  I describe the difference as being like, in the time before surgery, looking through a toilet paper tube with a prism at the end, panning and scanning to pick out everything in front of me, unable to prioritize anything until after my eyes have darted all around. Now I'm looking through a half-dome space helmet, able to hang back and let the scene come to me. Of course, my vision is still worse in my left eye, but my eye doctor told me "it takes in more than you think it does" and I believe him. I love to stare at an object and turn my head left and right to watch the object move from my left eye, to the middle, the right eye, and back. That is endlessly satisfying. Prior to surgery it used to be that 70% of the time the object would be repeated in both eyes, so to have such a rock-solid single unduplicated version of an object is still a thing to marvel at.

You can imagine how the widescreen view improves things. I am much better on a bicycle. I don't crash into things as much. I don't bump into people anymore. Mostly. I went downhill skiing for the first time since surgery this past winter, and was amazed at how relaxed I was. I was not frantic, scanning in front of me, surprised of anyone coming up from behind. With the ability to take in the wider view, and to have my eyes able to be steady and relaxed, I really felt like time moved slower. That there was more time in each second for me to figure out how to deal with the next mini-challenge, and the next.. Or rather, I wasn't distracted by so many other things, and nervous about what I was missing. I felt totally in control. During those moments when I felt I was pushing the envelope in terms of speed, I did not panic, but figured out how to dig in with my skis and get myself under control. It was relaxing. I felt suave. I tried different kinds of runs than I would before. It rocked.

Hiking is another activity that is now forever transformed. Anyone who knows me (and especially my wife) knows that hiking and other outdoorsy activities are part of my portfolio. I've spent the most time hiking in the White Mountains, which are particularly cruel trails to hike on. In order to prevent runoff on well-traveled areas, some very dedicated and clearly insane people lined the sloped areas of these popular trails with large rocks and boulders. This creates a very jagged and unforgiving terrain to manage to get up to the views. Prior to depth and widescreen, this was always a hectic, nerve-wracking enterprise. Especially going DOWN. I never knew how far away the next step was, and used a hiking pole to tap down before I stepped. This made me a grumpy and very slow hiking buddy. Fast forward to last summer, and I'm scampering down the Beehive trail in Acadia National Park, giggling. It's that different. Hiking is now not only doable, it's a joy like I just couldn't quite appreciate before. Plus I can look around me AND navigate uneven terrain at the same time. Won't lie. It's awesome. I'm trying extra hard to keep in shape partly to be able to enjoy these new physical skills for years to come. As for yoga, my drishti gaze is getting pretty good. I still have a long way to go with balance, but I'm much more quickly able to lock into a stable position and hold it.

Shaking Things Up

My Nystagmus remains, though slowly gets better. I am able to keep an image stable for a second at a time before my eyes instinctively twitch. I know there are some other treatments I can pursue for this, but between the minor improvement and my other dramatic improvements, this doesn't bother me quite as much as it used to. Of course it's kicked in like wildfire right now since I'm talking about it, so let's move on.

Man in the Mirror

Then there's the cosmetic element. The fact that I look in the mirror and see two straight eyes staring back at me. There are some times when my left eye still looks a little wonky, oddly pointing out now, but I can quickly reset to a position where both eyes are facing the same direction. I like what I see in the mirror. I actually like some pictures of me. According to my wife I sometimes strike a dead eye pose because I am focused too much on what my eyes are doing, taking all life out of them. I carry myself with a new confidence knowing that I am not visually confusing to people (no wisecracks) in the way I was before. Or rather than my mind is quieter because I am not fretting about the oddity. I often sensed an initial hiccup in first interactions with people as they assessed my eye situation. People didn't quite know when I was looking them in the eye. As a result, I didn't give a lot of eye contact either. I dwelled on my wonky eye. I noticed that in business meetings, when I was meeting someone new and I was with a colleague, the new person would instinctively look to my colleague. Who could blame them for focusing on someone less innately confusing? Or could it be that I dwelled on it, making my interactions more challenging both for me and that other person? How about both?

But I tell you this, having two straight eyes HAS made a difference in my interactions with other people. It just has. Sure it could be all in my head, and I have definitely gone leaps and bounds in my confidence since this event, but whatever it is, interactions feel more natural. I still have horrible issues with facial blindness - a haircut or outfit change can render an acquaintance a stranger. I need quite a few times meeting someone before their face is etched into my database. But I do engage in a hell of a lot more eye contact, and that alone really makes me feel more connected to other people. The two straight eyes just makes me feel like I'm on a level playing field with others, like I've been brought up to 0 from a negative state. Plus it just feels good to have the confidence to look someone in the eye and smile, knowing that it's the same experience for them as it is for me.

Old Habits

Despite all these upgrades, there are still some old behaviors that I'm still ironing out of my system. I've only had this upgrade for 2 years, so with 40 years before it to develop quirks, it's taking some effort to completely adjust to the difference. I still squint my left eye a lot, a by-product of not only its increased sensitivity to light (due to multiple surgeries) but also in an effort by my brain to filter out the duplicate, eroded image provided by my left eye. Now that I desperately want my left eye to work in consort with my right, I make an effort to open my eyes equally. However I find that sometimes, especially when it's bright out, or when I'm really concentrating on something, that I will squint my left eye shut. If not that, I've got that eyebrow a little cocked because I'm over-compensating the other direction. Either way, I need to just relax and focus equal effort on the eyes. It's hard to not consider the left eye lesser since the vision is poorer, but I'll continue to work having a balanced and relaxed energy to both eyes as often as possible.

I still have instinctive eye contact issues. I'm not always confident in meeting someone's gaze. I used to play around with my nystagmus, just darting my eyes around for no real reason than boredom. I do not do that anymore, trying instead to steady my eyes. I'm much less clumsy than I was before, but I still have a blind spot (har) for clear objects. I've broken more than my share of wine glasses. Windows can still baffle me and I bump my forehead.  I'm still coming to terms with my new level of confidence, shaking off the feeling of otherness that came from what I felt to be a dramatic visual oddity. Again, what I FELT was a freakish aberration. Because I internalized that feeling so much, I'm still working some of that out. But I definitely feel much calmer, I have greater peace of mind, and I feel like I am still partway along the journey. 


Rarely in life do people get to experience this unique kind of positive change, especially after many decades having gotten used to a lesser experience.  I feel truly blessed to have been introduced to this miraculous surgery. I am so appreciative of the people and circumstances that enabled me to have this experience. Our vision is so critical to our experience of the world, and the human world we inhabit feels like it was designed by and for people of better than average eyesight. I now have a new realization of the level of stress I was under all those years just navigating the world on an average day. But reading those words, that doesn't make sense, because I didn't experience it as stress, but just normal life. I am lighter now, and more calm, and I want to carry that into the rest of my life. I want to shake off those remaining feelings of otherness and awkwardness, and hike and ski and play Minecraft on an Oculus VR. I'll check back in with any other interesting events, and am happy to talk to anybody considering this very simple but remarkable surgery. Thanks so much for reading, and I hope I helped provide a new perspective to a typical experience. Bee seeing you!

Wednesday, July 31, 2013

Four month check-in

Hola amigos,

It's been a while since I rapped at ya, so I figured I would do a check in now that it's been four months since the eye surgery that more or less changed my life.

And to this day, all systems normal. There hasn't been any change in my vision since the last time I reported in. I have two eyes that work together, I am more of a citizen of the world, I have depth perception that informs and aids my navigation of the world, and I am so much happier with the face in the mirror. It is in fact so normal now that I really don't well remember how my vision was before. I can pull up memories of things like two sets of headlights coming in my direction, but in terms of how my vision pre surgery affected my life, those memories are melting away. It makes me very glad that I wrote about the experience in such detail. If I were to do it now my recollections and descriptions would be far more dull.

I have gotten used to the view of myself in the mirror to the extent that looking at old pictures of myself is kind of shocking. Oh god, that was me.

I do still marvel at some of the improvements, most notably with navigation. Maneuvering through crowded spaces is an exhileration and a breeze when it used to be a nightmare. My runs to and from work on busy city streets are so much easier, most notably the ability to look around as I continue to propel myself forward. Prior to surgery, when I wanted to look left or right, I had the feeling I would fall over. Not so anymore! I can be at a full tilt and look behind me to see if a bicycle is bearing down and can keep up my momentum. That's a lovely improvement that others enjoy without thinking about it. I haven't been on a bicycle yet, but I think that will be a lot easier to do for similar reasons. I will know more soon, as I am moving to a place where riding a bike will be much more a part of my life.
There are much fewer visual surprises, such as cars and people being in a place that was in a blind spot. I am far more aware, less surprised by the objects in their trajectories.

I still hate clutter, but I can navigate around it without tripping over every damn thing.

In compensation for my vision challenges, I have long learned to be very aware of sounds around me. This is most significant when I am running and I become aware of an approaching car. Now that I am better able to take information in visually, I sense a union of sight and sound that didn't before exist, that just makes it easier and less stressful to encounter the world.

Also, depth is now at the level of instinct that I can dodge out of peoples' way without thinking about it. If I open the cabinet to reach for a tupperware bin, and one drops, I can catch it without thinking, as opposed to letting it tumble out in front of me. Little changes like that are super fun and make me feel like I got a real power-up.

Some old habits are still hard to break. I am still TERRIBLE at eye contact. I look around the room, I look away. I'm still instinctively insecure about the way I look and having people look at me. There are other times I remind myself I don't have that wonky eye and it feels empowering, but on the day-to-day level, my old reflexes are still very active.

I still really concentrate on my right eye vision. I guess this is understandable since I get so much more power out of that eye. It's the eye with which I do everything, and most times this is how it is and how it's always been. One place where that is not doing me any favors is with my balance, which ias really not improved much at all. I have been going to yoga multiple times a week quite regularly now, and while I'm starting to really be able to contort myself and hold challenging poses with a smile, I still really suck at the simplest of balance poses. I know this also has a lot to do with the fact that my eyes still jitter uncontrollably, which makes it very hard to to maintain a drishti gaze. I had a breakthrough on monday night's power class when I really tried to zone out my vision, and also focus on trying to pull in my left eye, to really focus on it. I was able to hold a balance pose for a little longer - I think it was tree pose - but that emphasized what a long way to go I have to get better at that. I've always been so clumsy that I'm really yearning to fix that. I hadn't been thinking too much about going to a behavioral optometrist to work on eye exercises since I had been enjoying my improvements so much, but that experience with yoga made me think that maybe I should, that maybe there were additional things I could do to not only help my nystagmus (eye jitter) but also improve the cooperation between my two eyes. Maybe then I could stand on one foot for more than a friggin' second.

But all in all, life in the new improved normal is wonderful, but oddly normal now. It's really interesting how quickly we adapt to a new reality, to the point where the impact of the change recedes into memory. For whatever reason I had high hopes that this experience would leave me deeply changed not only in a physical but psychological way. But while the physical part of it is very much improved, I am still the same ball of stress, anxiety, insecurity and tenuous discipline that I have always ever been. There are no quick fixes to brain chemistry, at least not for me. But I do feel blessed, lucky, and thankful that I have been able to have this experience, and that I could bring you along for the ride.

Be seeing you!

Wednesday, June 5, 2013

2 Months On...

... and things are better than ever in terms of my vision. My view is open and my eyes are wide. Depth is natural, my balance is improving, and I am getting better at catching a ball that I toss across my field of view, left to right to left. I still have a measure of double-vision, of the slight glitch variety, and I still collide with things, but I am definitely doing better than before.

I had my two month checkup with my surgeon this week. She said I was healing great and my alignment is steady. The sutures are healed, and I am now able to wear my left contact lens. This did not change my experience with depth at all really, or if it did it's very subtle. It's just nice to have that side of my peripheral vision be clear instead of fuzzy, dim as it may still be. I'm wearing both now and very happy about it.

I'll see my surgeon again next year, and in the interim I'm fully recovered and really doing optimally. It's the best.

I posted this to FB on the two month mark. The support and comments were overwhelmingly wonderful. It's such an incredible part of this whole story for me. I'm all healed up and both eyes working together like old pals.

Stay cool everyone!


Friday, May 24, 2013

Sweet Simulacrum and the Protruding Overhangs

Another unseasonably spring-like day in the land of the 1-week spring! 60s and rain. Our transplanted dogwood, Hukura and Black Eyed Susans thank the high heavens.

I had a few experiences recently that tie into my wonderful new view of the world. New wonders don't come day to day now, hence the slower pace of blog updates, but when they come they are still exciting and worth talking about.

It actually started earlier this week, when I went with my good friend Sully to see the new Star Trek movie in IMAX 3D. Sully had said previous to my surgery that he had dibs on my first 3d movie. At the time I thought that was a bit silly, thinking that if I got depth, the whole world would be a 3D movie to me. However, now that I've seen one, I can say that the experience is uniquely noteworthy.

In fact, the kind of 3d you see in movies is pretty much exactly how I saw depth the first few weeks I had it. Since then, as I've detailed before, it's become more subtle, another vital but embedded layer of data in my overall view. I'd say having double vision gone and a single field of view has been as impactful as gaining depth, but depth is now pervasive but quiet, implied more than expressed.

I understand that the 3d as rendered in movies is exaggerated, and more so in Star Trek's case, as it's a big blowout Hollywood blockbuster. But that's how it was for me when depth first revealed itself after surgery. Exaggerated, dazzling and distracting to the eye, bigger than life. I loved that about the movie, and pretty much only want to see 3d movies in the theater from now on. Movie cinematography, lighting and effects bring something completely new to it as well. Lens flares that would never exist in even film photography floated in space in front of me. Blurry objects in the foreground of deep focus shots loomed in my view. Buildings reached toward me, warp trails squirmed in my near focus, and shuttles cruised a trajectory like a person on the street. It made me feel nostalgic for the days of early discovery, even if they were only a couple months ago. I really enjoyed the days of exaggerated experience. In the end, I'm glad for the state under which my sense of depth currently operates. It works, it's a huge help, and it's a frakkin' miracle. I really enjoyed the sensation in the theater, though, and I understand that this movie is one of the best present day uses of the 3d technology. It certainly added an additional element of spectacle to the proceedings, and I will definitely be seeking out future 3d features to savor that same experience.

I ooh'd. I aah'd. I moaned aloud a couple times. It was a fun popcorn movie. I am not a Trek purist, so I am not rankled by the artistic choices. I want a good story with good performances and good production elements, and that's what I got.

Interestingly - when I left the theater, the walls seemed to bulge toward me more. The exaggerated experience returned, just a little. It didn't last, but I could tell that my brain was definitely excited about it.

Of course, 3d movies are not perfect. They are blurry around the edges. There is a big hotspot on the screen. And it doesn't have the same sensory level of real life, obviously. There's still more of a sense of levels than real life. But in terms of the relative difference between a sense of depth or not, 3d movies are the best analogue yet. I feel like there's a way to share the difference of my experience. Imagine a movie being a crude simulation of real life. Then add that layer of depth that 3d adds to it. What is that difference to you? How do you describe it?

Truth be told, I actually saw Trek twice this week. Eliza and I recently played hooky for the day and went to see it again (she's as big a sci fi nut as I am), had dim sum for lunch, and then went to the rock gym to do a few hours of climbing. What a feast of a day this was, in terms of a lovely day with my lovely wife, and all other respects. And then on TOP of all that, it was a dazzling day of visuals too. I am a junkie for that level of exaggerated depth of my first few weeks post-surgery, so savored once again the hyper-real eye candy. We then dim got sum' at Empire Garden, and I enjoyed the huge interior space. I cannot live without some periodic administration of pork buns to my face.

We then spent the afternoon to MetroRock.  Eliza has really immersed herself in rock climbing, and is quite a joy to watch dance up the wall. I'm still a relative n00b at this sport, but love its mix of physicality and problem-solving. This was my first time at the rock gym since my surgery, and in a lot of ways I feel like I was starting all over. It really took me a while to get used to being up high in rock climbing. To trust the rope, and your belay partner. I have a really strong irrational sense of danger when I get up the wall. It makes me clench and tires my muscles out. It makes my head swim and makes me curse. And that was before. Now, when I can look around and see all the pieces swelling off from the wall, see the rope stand out from the wall, look down and see HOW FAR DOWN ELIZA IS. And how those overhangs looooom. I ... got burned out really fast. I couldn't focus or concentrate. I did note that thanks to all the yoga and working out I have a lot more strength available this time around. But man my brain tilted like a cheap pinball machine very quickly. It's going to just take me a few trips back to get my head around it. I'm not sure if depth or aligned eyes will have an impact on climbing long-term. It's too early to tell. It might be easier to look around to find where to put my hands or feet.  I certainly have more of an instinct about heights now, that's for sure.

I have my final post-op checkup on tuesday. Hopefully I will be cleared to wear my left contact lens. I have noticed that the more I make a point of trying to look with both eyes, not just concentrate on my right, that two do work together better. With the left eye clear instead of blurry, even with its very limited optical power, I think it will give my vision another critical lift. As always, we shall see.

See well my friends, and I hope you all have or had a wonderful Memorial Day.

Thursday, May 16, 2013

Familiar Perspectives

My goodness how the time does fly!

I go back to my regular routine and like that two weeks have passed. Phew!

I just got back from a 2-day business trip to Atlanta, which always gets me knackered, but it's been so long since a post I had to check in with an update. I even have two other blog posts in the works that I just haven't finished yet, so those will come along soon enough. But in the meantime, let's catch up.

It's been six weeks since surgery. My left eye is still reliably straight, and the white of the eye has more or less turned to normal. I look in the mirror and see straight eyes looking back, which still gives me a jolt, but not all the time. I'm starting to forget what it looked like to look in the mirror and see the lazy eye. I think I spent so little time looking at my eyes that it just didn't lock into the brain. But it is also an interesting testament to the fluidity of memory and priority of real-time experience in the mind that it's hard to remember.

Another thing that's getting hard to remember is what my double vision looked like before. I am so used to my current wonderful view now. And that's a good thing as far as I'm concerned. I've embraced and adjusted to my new reality to the point where it's starting to be second nature.

And that's the case for depth too. More and more often I don't think about it. Sometimes, like in an airport terminal, I get a nice visual sensation of the size of the interior place, the drama of its geometry. I  get a good sense of the layering of objects in front of and behind each other. Far distances have more of a sense of away-ness. It's really integrated itself into my day to day life now. I still have a couple more weeks before I can wear my left contact lens and enjoy the hope of one more big push to depth.

I'm planning to see the new Star Trek movie in 3d sometime next week, and we'll see if I get anything new out of that experience.

Interestingly I had someone who I had just met ask me if there was something different about my eyes. She said she was an artist and was very used to observing faces, and noted what she called a ring or crescent in my eyes, that caused a strange reflection. I do still have cataracts in my eyes, which I call the clouds in my eyes. But I don't think that's what she was talking about, as they are definitely not reflective. I think maybe the light at that odd moment was reflecting off the scar on my eye left behind from the cataract surgeries.

So, vacations done, back in full home-field swing, apart from the occasional business trip. I'm feeling like I'm starting to run the risk of "had a ham sandwich for lunch, it was in 3d" level blogging. I want to make sure to keep this blog relevant and interesting, and so will likely be posting less often, now that my surgery is a bit behind me and things have leveled off. Like I said I have a few I'm still finishing up, and lots of topics in mind for future posts. I also might expand the subject area a bit to keep it fresh. I really like the writing habit and want to maintain it, as I'm also trying to write a lot of songs nowadays. So we'll see what kind of verbal trouble I can get into, and I hope you'll come along for the ride.

Tuesday, April 30, 2013

A Not-so Brief History of Medically Everything

It's high time I spilled the beans on my medical history, to provide some relevant context and reinforce one of the important themes of this entire blog - take charge of your own destiny!

To begin more concretely, it all started when I was born. It was clear pretty quickly to my parents that I was not responding visually to their cues, and after a few weeks they took me to the doctor, who concluded I had congenital cataracts, a whiteness that covered the eyes and prevented me from seeing anything at all. I had a surgery when I was 8 weeks old to clear out the opacity by essentially poking holes in both eyes and trying to clearn it up. Nowadays they can peel the damn things off with a laser, but in 1971 their choices were very limited. The surgery was remarkably successful, though the cataract returned in the left eye. They had to do the same surgery again in that eye several weeks later.

This condition provided the obvious genesis for my visual challenges in two important ways. First, my eyes were completely covered during a time of critical neural development, providing NO visual information to the brain. It is believed that the visual area of the brain is likely undeveloped in comparison to a normal person. Second, the surgery itself caused damage to the eye, lowering my visual acuity and likely causing (or at least contributing to) the nystagmus I've had ever since. Since the surgery was done in the left eye twice, its visual acuity is even lower, rendering it far inferior to the right. My strabismus (lazy eye) was likely caused by the fact that the brain was trying to focus on the input of the good eye, and ignore the poorer signal of the other. The turning in of the eye is a means for the brain to try and ignore the bad eye's input.

Incidentally, for my whole life I did more or less try to pretend that my left eye didn't exist. It has always caused a distraction. I often close it out of habit. Interestingly, my impulse to do this has dropped to zero post surgery. For years I didn't wear a left contact lens, feeling like additional acuity in the eye caused exhaustion and terrible distraction.  I was even half-serious when mentioning to Eliza that if the only thing a surgeon could do for me is rip out my left eye and replace it with a glass one, I would do it. One thing I did know is that I was still seeing out of the left eye, and consistently so. This of course was endlessly frustrating to me before, but I believe it was a critical piece of what allowed me to be able to have the two eyes work together. Apparently other patients experience a total shut-down of the eye, or at least even more diminished than even mine, and that they can never get that eye to cooperate. Another way in which I was in the end insanely lucky. The eye was ready to do the right thing when it was pointed in the right direction. Miraculous.

Anyway, I was put on a solid treatment plan after the surgery. My mother was instructed to have me wear contact lenses as soon and as much as possible. Let that sink in. Contact lenses. On an INFANT. My mother tells stories of pinning me down and bracing my head to get the lens into my skull. I would start to cry and rub my eye and POP it would fall out, leaving my parents diving to the floor to find it. As a parent of a three year old I could not IMAGINE trying to get a pair of contact lenses into a kid that young. And I remember from starting lenses again in high school that it takes a bit to get used to them. And these were HARD lenses. Miniscule pieces of hard plastic take a bit to get used to.

Apart from frustrating bouts of contact lens wear, I just had a REALLY thick pair of glasses. My prescription is +13.50 right and +11.50 left. Strangely, my left eye is less blurry but worse in terms of overall vision (20/200 vs. my right eye's 20/80 optimally corrected). They've essentially been the same prescription my whole life, which is remarkable, from what I understand. I still have the same pair now that I've had for 20 years. I just keep going back in and having them adjusted. They  are uber coke bottle glasses, and always have been.

I recently got a snazzy new pair that has Carl Zeiss lenses. They are much lighter and a fraction of the weight. Interestingly, before surgery I really hated them. They are progressive lenses, and I struggled to adjust the slightly different way of focusing to read, and the image always seemed to have weird streakly Doppler effects and other blurriness that made it a struggle to use them. However, since surgery I swear by them. I switched to them immediately and was so thankful I had them. They distort the view much less than the ol' coke bottles, so that's certainly one reason. I think I can focus with them better now than I could before.

Anyway, I stuck mostly with the coke bottle glasses and occasionally an attempt at contact lenses. I remember having them when I was five and unable to adjust to the discomfort. I remember lying on the floor and my mother looming over me trying to get them in. Ugh. Sorry, mom and dad. I tried contacts again in junior high, and that didn't work, and then finally in high school, and took to them. Of course it was high school, so I was psyched too ditch the coke bottles, and I was older and a bit more mature so sucked it up and dealt with the discomfort. I've worn them ever since, though I always still used the coke bottles to read.

I couldn't live without my contact lenses now. I adore them. Especially the new pair I have - soft lenses, disposable after a month. Having previously used expensive hard plastic gas-permeable lenses that I kept a year or more, this is MIRACULOUS. Plus my vision is better, and the soft lenses irritate my nysatgmus much less. Thanks, Parelli Optical!

These lenses are good enough that I can use $25 readers from CVS to read, which is better than carrying the cokebottles around and popping out my lenses to read.

Frankly, I don't understand why ANYBODY would wear glasses when they could wear contact lenses. The experience with lenses is INFINITELY better than glasses, and seriously, the "sticking something in your eye" oogieness subsides within DAYS. And then you have super clear full-peripheral without a heavy plastic thing on your face. Do it if you can, you guys!

Anyway, as I grew up, doctors didn't push too hard to get contact lenses in, or to do much of any treatment really. Most every medical professional had pretty much the same attitude about me my whole life, up until my very recent change. I was apparently lucky to have the sight that I did have. The surgeon who did my original cataract surgery had done a beautiful job, but it was still a miracle that my vision is as stable as it is. As I got older and more interested in improving my sight, I always asked what new procedures were available, and doctors only said that there was nothing that could help me, most of the trouble was in my neural development, I was lucky to have any sight at all, and that it was questionable whether it would stay stable. I was told that I was susceptible to glaucoma.  The only treatment that was ever suggested was lens implants, which are essentially permanent contact lenses. My doctors always discouraged me from pursuing it, and admonished that the benefit was far outweighed by the risk. (I'm actually going to see a new specialist in this area next week.) I even went to Mass Eye & Ear in 1997 for a second opinion after years of getting annoyingly negative news from my regular doctor at Lexington Eye Associates. MEEI essentially told me the same thing, that I was fine at Lexington Eye, that there was nothing they could do for me. The next time I went to Lexington Eye my doctor got bent out of shape that I had been to MEEI. I got really discouraged at Lexington Eye a few years later when, in response to me complaining that using my left lens made seeing more distracting, they just said "yeah I can see how that would be". My doctor used to, when he passed a colleague in the hall with me,  say "hey, check this out!", wave us into an examining room, sit me on the chair and let the other doctor examine me. Not for an official task or a second opinion, but to check me out as an oddball case. I really didn't like their whole vibe - sour and pessimistic. But that's just me. Lots of other people go there and I'm sure are happy. They do give good treatment.

Note that nobody - not MEEI, and certainly not Lexington Eye - suggested strabismus surgery. I hadn't even heard of it until this past year, though they've been apparently doing them for 40 years. Either they hadn't heard of it, or they thought it was too risky for me somehow. I don't know, I can't imagine.

I don't hold any grudge for them not hipping me to this surgery sooner. I'd rather focus on the fact that I'm living the positive benefits now, and there's no point in looking back. Though I do mention it here to emphasize the main point of this long screed. BE YOUR OWN ADVOCATE. Do not rely solely on the opinions of experts to be informed. There is unprecedented access to good medical information on the far side of a Google search. Look stuff up. I sure wish I had.

Then it all changed in summer 2012 when, thanks to my wonderful employer, an author named Susan Barry came to talk about her book Fixing My Gaze. I didn't usually go to these authors talks, but the caption was captivating - the story of a woman who gained stereovision at age 50. I consumed her book, and immediately sought out a new eye doctor. Based on internal recommendations also at my employer, I went to the Massachusetts Eye Research and Surgery Institute. I found these folks to be endlessly optimistic, enthusiastic, and interested in my case. The intern assistant who did my initial exam there asked me more interesting questions and performed more interesting tests than I had had in the last 20 years of eye exams. They told me that strabismus surgery was a possibility for me, and there may even be other surgeries they could do to help.  I was immediately given a referral to Boston's Children's Hospital, and that brings us back to blog #1.

I grew up believing that I was lucky to see at all, and didn't question this overwhelming opinion for my whole life. I was so set in my belief that my eyesight would be the same for my entire life that frankly, I skipped a year or two of eye exams. Thanks in large part to where I work, whose stock in trade is connecting people with information, my eyes were literally opened to a completely different view. A circumstance that essentially came by accident, despite my efforts to understand how I could improve my sight. I will never be so casual about my medical care again, and I will be much more wary to rely exclusively on the voices of the expert in front of me, and check things out for myself. More information from more sources will always help in providing a full understanding of a situation. Take it from me. But not exclusively.

Monday, April 29, 2013

Days Since Last Accident

Back in college I used to do a gag where I'd walk with my head to the side talking to someone, then deliberately slam into a doorway. It apparently shocked a few of my friends and so eventually I stopped. I realize now how alarming that must have been, and see that gag as a way of acting out my frustration about something that regularly happened to me without my choice. I ran into doorways. I smashed against tables. I knocked over lamps. Things jumped out at me shockingly. I broke dishes. I was the embodiment of a bull in a china shop. I did feel like I was kind of battling against the world. Colliding and trying to gracefully recover, maintain my dignity, and move on.

After surgery, as I have reported here many times, my view of the world has changed. I feel now much more like I am in the middle of a big dome, with all my experience surrounding me. Doorways are no longer surprises, but in their position in the hallway, easily understood and navigated around.

But my "Days Since Last Accident" counter is regularly re-set to zero, even now. I still collide with things, but it is much better. Much much better. With more time and experience, I will be able to clock some days on that counter.

In recent years I had started dealing with my balance and coordination issues by going to yoga. I have attended classes at O2 Yoga  regularly for the past few years. I love the flexibility and core strength exercise, the full-body approach that leaves you feeling like you glow in the dark. I am getting pretty good at the flexibility poses, despite chronic tightness in the calves and hamstrings. I can do twists, and my body has elongated in a way where I've unlocked a lot more flexibility in my shoulders, back and core area.

One area of chronic weakness is leg balances. I cannot stand on one leg easily, and cannot sustain it. I am very wobbly and unsteady, and despite all the admonishments about stacking the bones and flexing the toes, I cannot sustain a good leg pose.

Some months before surgery, I complained about this to Mimi the owner of o2. She mentioned that my lazy eye could definitely contribute to balance issues, as the brain is getting conflicting information and the left and right sides are off-kilter. Additionally, it occurred to me that my nystagmus makes it very challenging for me to focus on one spot, an essential skill to gain the kind of gaze that supports balance poses. It's hard for me to feel still and grounded with my eyes jerking around. I was hoping surgery would help this, but thus far my nystagmus is not much better in either eye. I can maybe control it a bit more, but it's hard to fight off the eyes' impulse to move.

My goal with eye surgery was to remove the conflict between the two eyes, and give them the chance to work together. Removing the conflict and correcting the left-right alignment would improve my overall sense of balance. As of now, I would say that I can see where it's going but it's still a little early to tell. My brain is still adjusting, and I am very wobbly in some situations. Before surgery I could smoothly go from down dog to high lunge with confidence, but not so nowadays. Holding some poses just makes me stumble.

I do feel however that I have a stronger more stable base now. Someone shoved a folded paper under the table leg and now you can play Jenga on it.  And with that stability of vision I have a better fundamental awareness of the world now that I didn't before. This new awareness will help me get to a better sense of balance, I can see where it's going, but I have to walk the road to get there. Here's my answer to that -

Strap them boots on!