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.

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!

Depth Takes a Holiday

or "Straight Eye for the Pale Guy"

As previously hinted in this blog, I recently returned from a family trip to Mexico. Since we sipped internet through a straw for 10 days, this is my first chance to blog, and boy do I have a few things to lay on you today. The beaches of Tulum and Playa de Carmen are wonderful playgrounds for my new view of the world, and it has been a great time of experimentation for me in this area.

Here's one of the places we stayed. A friend of a friend who lives in Tulum says it this place is considered an insider place and the best on the beach strip. We tend to agree -

Rancho San Eric

We had direct access to an extremely private beach, on one of the world's great beachfronts, on the east side of the Yucatan Peninsula in Mexico, right across the Gulf from Florida. Dry, scrabbly country lay across the interior, while gorgeous palm-tree jungle-rimmed white beaches lined the shore. Turquoise water, sand like flour, a steady breeze and sunrises over the horizon in the east. A very mellow vibe, definitely off-season, very international crowd. I didn't get to a yoga class but I did run up and down the 3 mile stretch of beach a few times. We took daytrips to Chichen Ittza, Tulum Ruins and Punta Leguna Nature Reserve  We swam through a few different cenotes, and let me tell you those things are ASTOUNDING. Eliza promised some instant gratification batch of photos, so I will post them as soon as they're available.

So yes, there was an astounding array and quality of visual stimuli for me to play with. And play I did.

I previously described my depth perception like a magical bird that would grace me with an occasional visit then fly away, with no assurance of return. If my depth perception were still that rare magical bird from, then our relationship has changed reliably from a rare wondrous occurrence to a regular presence. This bird has become like my new cool laid-back roommate. He always knows what to watch on TV, he's usually pretty fun to hang out with, and occasionally lobs me a few curveballs to make life more interesting. I no longer question whether or not depth will return, but only how much and when. Depth doesn't jump out at me as much anymore, but has insiunated itself into my overall view. Especially around familiar places like the house and the car. My collected 3d map of these familiar spaces lends a great deal of sense of volume to these places. New places tend to be flatter. Only after accumulated experience in the space does a sense of its true depth emerge. My brain is still learning to work with this new influx of data, and appears to fudge some scenes. Not everything has a ton of depth individually, but objects are generally still positioned reliably in space. Busy scenes are flatter. Individual objects are more pronounced. Everything inside a car is well-defined, while the exterior can be very flat. This has improved since I got home, as I am now spending more time around cars. They individually are starting to have more of a boxy quality than before.

The interiors of airplanes are groovy. Curves bulged in on me like the ceiling of a Cheesecake Factory.  Dramatic lines and narrow fuselage wrapped itself around me. The repeated, boxy seats were always worth a visual chew.

The sight of moonlit palm trees bobbing and swaying in the night breeze is the planetarium laser show of my dreams. They are a repeated cadence of 4ths or 5ths, spiked by a chromatic woodwind run, then easing into a 5ths to 6ths pattern, always moving, never resolving, but always soothing, always swaying. Silver fingertips reaching for my cheek.

People continue to dazzle. Faces hold my stare, and hand gestures pop and catch the eye. People appear to reach toward me in an exaggerated manner.

As for curveballs, depth is still casting some spells on me. My interpretation of the world through this new lens is still flawed. Walking back from our car one night, I was lighting the way with my Android phone LED "laser". Lyra was in front of me, being line leader as she always wants to be. Her shadow took on the appearance of a separate being, standing direct walking in front of her. It really popped like an individual entity. I think my brain was trying to grok whether it should have depth.

The ocean looks higher than before, and like every next wave could wash over my head. Waves and foam are entrancing and dazzling. Being in the water, the waves in front of me draw much more focus with their hypnotizing undulations. I can perceive bubbles, volumes of roundness that swell out and then pop in the swelling and release of the sea.

Snorkeling was lovely. In the cenotes, there are spaces where the floor of the pool drops away, and it's another underwater cave deep below. Even underwater, I got a real deep sense of my relative smallness when compared to the space. The wake I made with my hands had a wonderful depth of space, like a 3d simulation of the Universe on your iPad. SolarWalk is my favorite.

Also in the cenotes, floating on my back and looking up at stalactites and little caves, with birds and bats flying from one hole in the rock to another. The awesome gravity of the rock pressed down on me from its bulging, imposing belly up above. But seriously, cenotes are the coolest things ever. Check them out.

There was one area that I really hoped would be helped by depth, that has instead proven to be more problematic than ever. Supermarkets. I live near the Porter Square Shaw's, and my preferred time to go there is 1am, as I have the place to myself. Busy supermarkets for me are kind of a sensory overload. The act of having to find a specific object in a strange supermarket is extremely stressful to me. The combination of navigating strange carts in strange aisles among strange people reading strange currency on shelves arrayed in strange ways melts my brain. The addition of depth has definitely provided more of a sense of arrangement of people and stuff in the store, but I struggle to wrap my head around the trajectories of people with their big carts in small busy aisles. Then having to look for what I wanted to buy? That was one too many things.


So depth is taking on much more of a supporting role, rather than being a front player. Defining spaces, informing me constantly of the relative position of my body to the environment. And it feels right, the way it should be. And I think it will get better. My brain will continue to accrue memories and experiences and have more information from which to build its internal referential models of the environment. I am better informed about what's around me, and am blessed with a truly awesome fresh source of beauty and wonder (and confusion) in my world.

After a week of a rustic paradise of mostly home-cooked meals and open windows, we spent a couple days in an all-inclusive place in Playa Del Carmen called Sandos Playacar.

I had never been to a place like this. Massive pool with peppy instructors giving pool-dancing lessons. Open bars and frozen blender drinks. Spa, gym, tennis courts, mini-golf, monkeys, not to mention a gorgeous beach. And not to forget all the beach vehicles and activities on offer. Eliza and I went para-sailing while Lyra was in the kid's club.

One of the indigenous species at an all-inclusive is the multi-station buffet. This place had several different buffets running at any one time, and one night they had a Mexican night with yet another ad-hoc buffet.

I have to be honest. I hate large buffets. The buffet we went to regularly was crazy loud, and set up in various different stations. There is so much visual and positional information going on at any one time in an environment like that for me that I feel paralyzed to both process and navigate that information. You might as well put me in for a fluff cycle in a clothes dryer.  A single-line buffet I can handle. I have a grounding element in the line of serving dishes, or tray rail.  Navigating a multi-station buffet for me is the very definition of stress. This has not improved with depth. In fact, people feel like they are jumping out more as they zoom back and forth. People do not move in predictable trajectories in multi-station buffets. They think they're going back to their table with their pile of fries, but notice the display of sweet and savory sushi. My strategy for dealing with this personal terror was to gravitate toward the hot cook stations. I ate crepes, steak bites, omelets and tacos. Also, if you go for the fresh-cooked stuff, you don't have to worry about how long it had been sitting around on a buffet line. I can hang out there waiting for my fresh-cooked thing and get the lay of the land for the rest of the buffet, and figure out specific points to which to gravitate. I really can't stand carrying plates of food through zig-zagging people and rows of tables. I like sitting at a table, having someone give me a menu, squint at it in the gleam of my Android phone's LED "flash", telling someone what it is I want and having them bring that thing to me. I also hate carrying a plate of food and trying to find someone in a cafeteria. It's brutal. Due to my vision I also loathe places where menus only exist above and behind someone's head on a high wall. And that is a LOT of places. So that's the view of one crappily-visioned person toward the food service industry.

Anyway, there were other great visual experiences at this place. They had a lovely Mexican party with lights and decorations dangling. Everything was bold, brightly-colored and open. Palapa roofs vaulted over my head. And oh so much people-watching.

I remain so in awe of the wonderful contribution of this new view to my quality of life. Even though my balance is still not back to where it was before surgery, I do have more confidence in my general navigation through the world. I feel somehow more a part of the world, less cut off from it. And I look people in the eye more, and strike up more conversations. I don't wonder if they're confused by my eye, or are judging me for being different, because I know I can lock in with them in confidence. It's an incredible feeling.

I'll be able to pop in my contact lenses in another few weeks or so. I'm going to wait to check in with my surgeon again in mid-May. The sutures and stitches are still dissolving, and there's still a bit of pink around the edges of my eyes. I don't want to push it, and I'm not feeling overly compelled to rush it. I am reliably living with depth now.

Before I close I want to honor something we were completely separated from this whole time away - the tragedy related to the Boston Marathon and the ensuing chain of reactions and events. My experience with this event was completely through facebook postings and what I could pull down via Google News. It felt terrible to be so far away from the pain at home. Both Eliza and I have crossed that finish line multiple times. While we are not directly related to the killed or injured, our deepest sympathies go to those families affected by the horrible event. I also give my greatest appreciation and gratitude to the law enforcement community, and to the community at large for coming together so spectacularly to bring the perpetrators to justice. I also give my respect and love for the spirit exhibited by the city of Boston, the city I call my home by choice, and one of the great cities of the world. A lot of people come and go through here, but I feel very much at home here.

And home we are, and coming down from a long journey home. We were definitely "that" family today on UA1047 EWR-BOS 24APR13, so our deepest apologies for the passengers from rows 24 to 28. I welcome any advice for dealing with an irate 3 year old during an extended landing sequence.

Back to life as normal ... though for a short time for me. I leave again next week for the New Orleans Jazz and Heritage Festival, where I expect many new sights to behold. And I already have a good base tan, for a pale guy.

Boston strong!

They should have sent a poet.

But they didn't, they sent me instead.

So in the full light of all the bad poetry I've used to describe the sensation of adding depth perception to your ocular arsenal, I will try once again to explain what exactly it IS as an experience. I will use all of the scientific acumen I have to provide a clinical, factual account of the experience of depth perception.

I can't. I have no science for this experience. All of my words to describe it revolve around the concept of "feelings", "gut instincts" or, "just KNOWING" something. Is there a Scoville scale for depth perception?

My experience of depth perception is not one of seeing something additional, but of having my brain impose additional information upon what I already saw. I can point at myself in the mirror, and know without additional information that the finger in the mirror was separated in three-dimensional space from the shoulder of the arm attached to that finger. Based on the combined information of the two eyes, the brain can - not always perfectly - replicate a 3-dimensional arrangement of the things in view.

The perception of three dimensional space is not consumed as additional visual information. It informs the visual information. It is inherent in the visual experience. The knowledge of depth is not represented with any additional content provided by the external world, but as interpreted by the brain. This knowledge is immediately implicit in every interaction with the world.

Prior to having depth perception, when I would point point at myself in the mirror, I knew my finger was in front of me because it was attached to me, and because I know what it looked like to have a finger pointed at me. To me this came with the knowledge that the finger was far in front of its possessor, since I knew from accumulated experience that the shortening of the arm meant it was pointed at me and not toward the side. The same way I knew that when I saw a similar pose in a photograph, or even comic book.

Now, with the awareness of 3-dimensional space, it is the same finger pointing at me in the mirror, and visually looks exactly the same as without depth perception, but my brain has deduced from the input of both eyes that the finger is ahead of the holder.

Alignment of the eyes is essential for depth. The two eyes need to work together to ignite the neurons responsible for processing that internal 3d map.

In other words, I got a performance upgrade, and can now use the 3d chip in my GPU.

As a quick personal update, depth has returned regularly, and has taken on a bit mellower a quality for me in many situations, which is a good thing actually. The world still feels newly arranged in 3-dminesional space, but in a mellower suggestion. The brain is still learning to process the various images of my surroundings to present an interpreted version of 3d reality. Or at least, that's how it seems. So I can vibe the volume of the room around me now, when before I was more focused on the lamp or overhead fan. It has more fully insinuated itself into my visual perception. It's more solid when it is on. I do get the sensation that I'm still generating the kind of information my brain needs to be able to replicate that mental 3d map of my surroundings.

I'll be off and on the next few weeks, but will try to have some good updates when I do post. More soon!

She said it would take a couple weeks, and she was right - TO THE DAY.

Before surgery, and even after, my surgeon said it would take "a couple weeks" for my brain to sort out the new input and start to regulate. I don't think she knew how accurate she was. But as of wednesday, exactly two weeks after surgery, depth has returned reliably every day. I would not say this new killer app has reached "always on" status, as it still goes away when I'm tired. But once I get my contact lens on in the morning, the world starts to go into beautiful relief. Of course we'll see what happens tomorrow, this is all still pretty miraculous and hard to believe.

In my maudlin moments last week, I had described my experience with depth similar to encountering a strange and wondrous wild bird that settles on your porch rail on morning. You put out some food for it, encourage it to stay, and bask in its presence, until it unexpectedly flits away into the horizon. You feel sad, your loneliness put into stark relief by the magical animal's absence, and can only hope that you'll be lucky enough to get a repeat visit. You think about that bird, it keeps you up at night as you relive the sight of its glimmering feathers, its otherworldly stateliness. The next day you fill up the bird feeder and wait ... and hope .... and wait ... and look! He comes back!!!

But of course, sometimes he doesn't, and that makes you wonder if he ever will again.

But since wednesday, that bird is rocking my porch rail. It's set up a nest, and gotten a little comfortable. He sits and reads the paper. We have breakfast together. He hangs out and snoozes in the sun. He still flies home at night, but he comes back the next day, and I'm like "oh hey what's up depth?"

So, yeah I'm starting to apply personality traits to a neurological sensation.  That's probably a sign of psychosis.

I've enjoyed a few runs with depth now, and it really really enhances the experience. As I've described before, I feel a lot more connected with my environment now, I feel more of a part of that whole, and with objects and people more clearly arranged in space, I feel so much more comfortable finding my place in that environment. The road or sidewalk seems to stretch out ahead much more invitingly, the flat surface of the road defining my path and drawing out my steps. Objects, cars and people pop with a dramatic clarity that makes them so much easier to take in quickly. I know I'll want an optometrist to validate this, but I really feel like my vision is more clear with depth. Edges are more well defined, everything has a hyper-real, hyper-focused quality.

I can tell with much greater detail the contours and inconsistencies in the road, which is a HUGE benefit, as it makes me much more sure-footed and aware of spots to avoid. I ran along Memorial Drive today, the Charles to my right, and really got a sense of the scale of the river stretching off to the distance. The buildings on the other side didn't take on any new quality, but they did seem more in focus than maybe they had before.

With trees and fences in such relief, it feels like I'm zooming down a trench. I thought of this more than once on my run today -

especially that classic shot right at 4:52.

As my friend Sully put it in his classic way, I was making a trench run on the Depth Star.

My favorite part of the run was when I turned left off Memorial at the Longfellow Bridge and cut into Kendall Square. The tall, dramatic buildings are at the perfect distance and scale to stimulate my depth perception in an awesome way. I felt like I could touch them.

Frankly, I want to touch everything. More than once my descriptions have sounded like the rantings of a drug-addled club kid but well, at times I do feel a bit stoned, and this new sensation invites all these goofy emotions and desires, like to put my arms around the big beautiful box truck that's careening around the corner. I won't really, but hopefully you see what I mean.

People, again, have such a great new visual excitement now. Their movements, hair, clothes, shapes, with their infinite variation. are all so interesting to look at. I feel like I'm wandering around with a super power, and think to myself "you have no idea how good you look to me".

Objects with depth seem to take on a whole new sense of scale. My previous experience with depth limited my reactions to items of very large scale. I could appreciate the awesome magnitude of the White Mountains, or St. Peter's Basilica, or a 747. Now that same sense of scale and magnitude is somehow applied to smaller objects. You've already read my description equating my bathrobe to a mountain range, and bread to the surface of the moon. The ham I referenced earlier had curves reminiscent of the Guggenheim museum. A bus going by in front of me feels like that opening scene in Star Wars (yes, going full nerd now) where the Star Destroyer slooooowly comes into frame overhead. Trees feel like cathedral columns. That sort of thing.

Navigating people while running used to fill me with dread. I'd enter Harvard or Kendall Squares and be like "oh boy, here we go", and just do my best to muddle through and not bang in to anyone. Now I feel like I've gotten an amazing power-up, I'm at level 100 of the real-life Frogger game and have the skills to go with the flow in such an easier way. I'm a water sign anyway, and feel like that affects my attitude on the world. It's now so much easier to snake among people. It's fun. It feels like a challenge, a dance routine. And my confidence is just so much higher.

So, I really do feel my brain has turned a corner and depth is much more reliable now. It doesn't introduce itself into every situation - nor should it, or else the day would get very exhausting very quickly, but when it does, it is almost always a wonderfully clarifying and organizational contribution to my experience of the world. And a rampantly beautiful one. I continue to be in awe and feel so lucky, and a bit pissed off that you all have been hoarding this beautiful depth from me for so long! :) It was probably better not to know until I was ready.

Posts are going to be a bit more sporadic over the next few weeks as I do some traveling. I'm sure that's a relief. :) That should hopefully give me lots to discuss when I do get a chance to post an update.

I'll leave you with the soundtrack to my run, a great energy boost to get me through the windy morning...

Have a great weekend. Go deep!

P

I had beautiful, glorious depth today. Probably the best yet.

I think it helped that I now have a contact lens in. Everything is gorgeously clear. Things feel even MORE clear with depth, somehow.

It started when I was talking to a workmate who had a cochlear implant installed in 2002. In the middle of his explanation of his fascinating borg-like technological enhancement, his head started to become remarkably round and his hair resembled a tidal wave. It continued as I was talking to another co-worker about my recent visual transformation, then after that, it was ON.

Big as life, really as big as day 1.

Signs loomed near, trees towered far. Branches reached out toward me like beckoning fingers. Buildings seemed taller, exaggerated by their geometric lines. Cars were at a stark relief from the road, and their shapes were more defined, like eggs in a crate as opposed a row of indistinguishable blobby bars.

People seemed to exist in their trajectories, defined as much by the space between them than by their interesting and peculiar bodies. With roundness, bodies take on a quirky feeling, somehow even more human, more blobby. Hair is a mist, a fog of depth tricks. People stand out from the ground with the obviousness of pieces on a chessboard, each one in its place with its specific path. With them arranged in space, I could see my own trajectory among them. I didn't feel compelled to scrutinize each one individually like I used to need to do, I could take in all the pieces on the chessboard and see where each are going.  I can plot a course through the objects as I go.  This makes it IMMEASURABLY easier to navigate crowded spaces. I feel like part of an environment, as opposed to a driver forcing their car through a rainstorm. That metaphor is more about the effort and attention involved more than the clarity or acuity. Yes, I had the constant distraction of double vision before, but the widescreen life just gives you so much more data in a nicely arranged way. The world feels more organized. The stark relief of objects on the relatively flat surfaces accentuates this.

Based on previous anecdotes I was wondering how a stairwell would feel, and I thought about this as I was descending into the subway (I was going to meet some friends in Davis Square). I hopped down it as normal, and dashed to catch the train. With a moment to look around me, I observed the sensation of the handlebars looming downward, other passengers looming near or arranged far.  I could vibe the openings in the crowd and easily saunter among them, now knowing how close I was to colliding with someone. I used to just barrel through a gap with casual abandon, hoping for no collision. Now I really knew where people were standing in space, could be relatively sure of my own position, and felt like Fred Astaire navigating among them. I enjoyed looking down one long narrow side of the train than the other, really getting off on how damn long the subway train looked. I also enjoyed observing peoples' rocking back and forth, and how the arrangement of different sized people resembled an arrangement of flowers, each with their deliberate position and height and quirk. I don't know, more like a wad of Q-tips in someone's hand. They all seemed so individual, each a single cigarette in a partially shaken-out pack.

I'm sorry. I've been really struggling to find the language to describe this experience. People have been asking for more detail, and I want to be able to provide it. All too often I resort to technology metaphors, relating my new vision to IMAX or widescreen, or like a beautifully rendered simulation. Real life is the sweetest Pixar movie yet. I'm trying to change it up and find a different way to describe the sensation, get at that unique feeling of the difference in specific situations. Now that I have a bit more experience with it, I can hopefully describe how depth affects the way one interacts with the world. It really is a subtle but powerful change. I longed my whole life to describe to other people how my vision differed from theirs, but every time I tried, I always ended up saying something like "well, you know! You're the one who has it! Why can you catch a ball and I can't? What's different?" Now, I think I have SEEN and EXPERIENCED the difference, and am still at a loss to put words to the difference. But it's there and it's palpable. It's not really even in the eyes, the experience or sensation of depth. It's in the mind. It's in the gut. It's an abstraction, anyway, the way the brain takes the individual images in from your two eyes and makes some assumptions and provides this additional sensory input to your brain.  It feels sensory. The position of something or a person close to me is more something I feel in my gut than my eyes. Though objects up close do feel a little hyper-focused, somehow. It's an instinct more than a visual sensation. I couldn't draw the difference, but I can FEEL it. I had been asked a few times whether I hadn't been noticing the depth because I was just getting used to it. I have thought about this many times, but today I can tell you, I had that difference back and it was unmistakeable.

The contact lens really helped, I think. The brain's ability to build upon its input was helped tremendously by this, and I am really excited to see if it boosts again with the addition of the left lens in a few weeks. Who knows what tomorrow will bring, at this point?

I called Eliza the minute I got off the train. "IT'S BACK, BABY!"

And it still is. It was all night. I could find my way around in a dark place so much easier. Instead of a ruddy Rembrandt knockoff, a dark interior space was just a dimmer version of the spatially-arranged world, and I found I made no accidental contact with no chair or patron, and could comfortably navigate the room to get to and from my table. Gene Kelly, people.

So I spent some time being giddy, and just looking around, and marveling again at what a gift I get to enjoy to observe this drastic and lovely change, to see all the normal mundane things in life imbued with a sense of wonder after so many years. On the way home, I looked down side streets and they seemed to stretch on and on. I can see cars coming from a long way and really tell how far away from me they are.

I wanted to stay for karaoke tonight, but was feeling beat and knew I had to come home and finish taxes. But if I had, this is song I was thinking of doing...

So yeah, I will continue to struggle with the language to describe it, but if I can be a voyeur to a few surgeons interested to know what it's like to come out the other end of their work a changed person, then I'll keep trying.

Rock that z-axis, everybody.

P

As previously repeated ad nauseam, I had my two-week post-op checkup yesterday, so had a chance to gush to my surgeon and find out how things were going from her perspective. I ran from home over to Mass Eye and Ear, and checked in at the Boston Children's Hospital annex there, which is where my appointment was (again, my kind of surgery is mostly done on kids). So as usual there were kids running around, and cartoons on the TV. I like going there, seeing the parents with their kids. It makes me think of what my parents must have been feeling bringing me to a place like that. If it were me, I imagine I'd be a maelstrom of hope, fear and anxiety masked in a veil of calm. Just the thought of bringing my child to the hospital fills me with such an emotional cocktail.

Now, I have really tried not to engage in hyperbole when describing my experiences with my changed vision, but sometimes it's difficult. It really is a very dramatic change. Having a toddler in the house and being well-versed in the Disney canon, I have had occasion to blurt out a particular song in my moments of existential reverie over my improved vision. I do this sometimes. Be glad you are not my officemate. He's a saint.

So what could possibly be better to have come on the TV in the waiting room than that very blasted song...

Synchronicity? Coincidence? Strategic counter-programming to lift the moods of worried parents? Doesn't matter, nowadays in my better moments I am jumping right on that magic carpet and swooping through that endless diamond sky.

Anyway, back down to earth, when I met with my surgeon, she said I was "healing beautifully", and she and her assistant did a bunch of different tests to inspect her work. At one point she held out this object with lights inside that spun around when she pressed a switch, and had me track it with my eyes as she moved it around. I wondered to myself what kind of opthamalogical wizardry was this? And being obnoxiously curious I asked, and yes, it was just a toy. To test my visual acuity I had to look at not a drab letter E but an adorable teddy bear driving a car. Being a father, none of this seemed odd to me at all. :)

At one point they put on red-blue glasses, and I noted that I very clearly saw one blue image (left eye) and one red image (right eye). No fusion there yet. The surgeon's assistant held up a wand with lights on it and asked me how many there were, and what color.  This indicated, as expected, that my left eye was doing all the heavy lifting. No surprise there.

My surgeon noted that the muscles were such that I was still having some trouble being able to look hard to my right, due to the tightness of the muscles on the outside of my eye resulting from their new position.  She said that this might mean my eye could eventually drift outward. She also said it could drift back inward again... or that it could stay the same. This is something I will have to watch over time. I asked if the fact that my eyes seemed to be working so well together would motivate the brain to keep it in its center position, and she said maybe. There's just a lot that's uncertain, and every case is different.

But she did say there was nothing I needed to do to work on depth or the fusion of my eyes, that it would just happen or not. She encouraged me to start wearing my right contact lens again (which I was incredibly happy to hear), but that I had to wait on my left side as the stitches were still healing. Apparently I need to wait another month before trying, and even at that point the contact lens may still irritate the eye so I have to be very careful. She said there was no concern about mental confusion with a contact lens only in one eye, that the left eye would behave itself for now. Hopefully when I go to see a vision therapist they will support this decision. I also asked here if there were any concerns with the fact that I stare at screens all day for my job, and whether the fixed focal length was a problem. She didn't seem to think so. Regardless, I will continue to take frequent breaks to look out the window and give my eyes some different input.

My surgeon was very kind to say how descriptive and observant I am about my eyesight. She said that doctors like herself tend to be "voyeurs" as they cannot know what the experience of their patients are, and must rely on our testimony. Perfect time to pimp the blog. Hello, doctor, if you're reading. :)

But in general things were very positive, and there was nothing to be concerned about. I was a model case, the alignment was still great and that was basically that. I will see here again in mid-May.

In the hope I would be cleared to wear contacts I dashed right to the bathroom and slapped one into my right eye and sang a silent halleluja chorus to myself. Finally, my best possible optics! I went outside and observed that world seems very cluttered indeed! Back with flat vision, the world is an assault of visual information with no true priority imposed on them except which I can sort out from a lifetime of visual cues. However, due to my eyes working together it is much easier for my brain to process all this data, so it's still infinitely better than before. I enjoyed running over the Longfellow bridge, seeing the whole sweep of my favorite view of my town across my entire periphery. Running is SO MUCH MORE FUN. I also note that I can now do something else  that I could NEVER do before - look to the side while I run. From Sue Barry's book this is related to being able to have a wide field of view, and looking with only one eye makes it very difficult to do this. This will be good news to my wife Eliza who loves to sightsee when we run, and will often say "ooh look at that house!" or something, only to be answered by a muted "uh huh" from me as I focus everything on the few feet in front of me. This is a very nice change indeed.

So, fusion continues. My double vision is barely there at all anymore, and only appears as a very subtle anomaly. I am starting to have a hard time telling what eye I'm using for what, even though my left eye is blurrier than the right. It's so great to have the view move smoothly into my periphery, it makes me feel like so much more a part of the world, a part of our shared immersive experience.

Depth is suggesting itself again, thanks in part to my contact lenses being in. I know it will be there for me when I am ready to work on it. I picked up a couple books on meditation last night and will start trying to practice that. I will spend the next few weeks letting my brain adjust some more, do the exercises I know, and then when I am back from various trips in May I will pounce on vision therapy and kick this whole experience into a new level. Cannot. Wait.

Some Pretty Sweet Fusion!
A nice soundtrack to today's post by Chick Corea & Return to Forever. I love that Fender Rhodes so much.

Anyway, a great weekend of being outside and soaking in my new view. I've gushed about it before, and I will again - having my eyes work together instead of against each other has made a massive difference in the way I see and experience the world. Before all the depth stuff, and at this point I'm kind of thankful that my brain has put depth in the back seat to allow me to wrap my head around this awesome advancement of a single continuous view of the world. I still have a hint of double vision at times, especially when tired, but my general experience is of a single, fused whole, like a dome all around me. I can see that my brain is really starting to FUSE TOGETHER the images between my two eyes even more than before. The amount of time I have double vision now is decreasing rapidly.

This has been like going from watching two old cathode ray TVs sitting side by side to sitting in the perfect seat for an IMAX movie. It reminds me of the experience of going to see "To Fly" or "Blue Planet" at the NASA museum in Washington DC.

Check out the first few minutes. When you watch this on a massive screen, that first excerpt of the moon landing sits square in the middle of the screen, using about 20% of the total screen real estate. Then the screen goes dark, and as you're staring ahead into the darkness you get a sensation of light coming from the bottom of the screen. Then you look down and WHOA - you are taking in this MASSIVE view across your peripheral vision of the Earth swinging up into view. I suppose that's a bit lofty and dramatic, but that's how it feels. I stop often to just zone out my view to the furthest perspective possible, and marvel at the clean flow of imagery from my left into my right eye. Suh-mooooove.

I would say that before surgery, my left eye contributed 5% positively to my eyesight (contributing some peripheral view to the far left side) and negatively impacted me by jeez I don't know 15%. My brain was confused by multiple images, wondering which was the correct one, and the overlapping images caused me to not see optimally out of my right eye. I literally spent my whole adult life trying to pretend my left eye didn't exist. People that know me notice I close my left eye a lot, especially when concentrating. I didn't wear a contact lens in that eye for years. It was just easier for me to get around to think it doesn't exist.

But of course NOW, I feel like my right eye is helping to elevate my left eye. Both eyes are working together, and the left eye is probably contributing 20 to 25% to my total viewscape, with my right eye taking up the rest. So, no surprise there that the right eye dominates, but the left eye is able to contribute.

I just lay in bed and stared up at the ceiling and saw all four walls around me. Outside, the sky feels like a massive dome. I feel more a part of the view as well. I feel somehow like I am part of the scenery more, less like I'm struggling to make sense of the imagery and muscle my way through it. I can exist in the space in a calmer way. All this language sounds a bit ridiculous.

The minor downside is that it is hard sometimes to focus on one area, like a screen. I am distracted by the images to either side, my eye jitter kicks up, and then it's much harder to read. I imagine this is all part of the re-learning process.

Speaking of which, I did have a bit of depth on saturday while outside. I did sleep better so I think that helped a lot. Plus I was outside, not spending so much time staring at a screen at the same focal length. Thankfully I have a window in my office with a long-distance view, so I will make an effort to take frequent breaks, stare out at the horizon, go visit folks instead of email them (heads' up, everybody), etc.

And I am done feeling sorry for myself about depth. The way I see it, it was ALWAYS a long shot. I figured before surgery that I would need to undergo months of vision therapy without any hope of gaining depth. Now I have demonstrated for myself that my brain can do it. And if it can do it once, it can do it again. I think things will really start to rock and roll once I get my contacts back in. I have been switching between the distorted view of my glasses (and lack of optimal peripheral vision with them), and walking around with no correction, where I can enjoy the Total Fusion Experience (TM) and full peripheral vision, but everything's blurry. I can imagine that the brain is struggling to reconcile all this data, and I can tell it's trying. So I have every hope that in a couple of weeks once I can wear my contacts again and work on seeing with depth. It's in there, I may need to help coax it out. So I am in the market for a vision therapist, with which to work on exercises for both depth retention and my nystagmus. If I still have to do the work to get the depth, it's still miles above where I was before surgery, since I now know what it looks like when I see it. I will get there! In the meantime, I am off to enjoy my prime seat in the IMAX theater of my mind. I think that needs a bit more trippy fusion music to go out on...

Happy friday!

No depth at all yesterday, boo hoo. I hope this is not the start of a trend, but just a fluctuation due to my poor sleep. I am not despairing over it, but do feel a bit like a junkie craving the rush of that first high that came from the big bang of instant depth post surgery. I am doing some exercises given to me by a friend that are meant to help ease the brain into the new reality, and will be hitting up that friend for more if she has them. I guess it does help to feel I am doing something to help the situation, and I'm already becoming a broken record about this being an ongoing process. I must remember, it took a few billion years after the Big Bang for the Earth to be created. Actually, I'm not so sure that's comforting.

Now, nine days after surgery, there is zero pain, and barely any discomfort at all. I feel a sensation of the muscles of my left eye being a bit tight, especially when looking to the left, and I expect that's a result of the muscle straining on the inside toward my nose. I expect this is normal but will bring it up next week. The eye is a shade lighter pink today, so no longer the color of Pepto Bismol, but more of a pastel pink. Interestingly, it's white right above the iris, like my eye is wearing a little white beret. I don't know what that's about.

Terrible sleep last night again. Between running to and from work, I put in six miles, and I lifted weights for an hour, trying to knock myself out. I then ate two big bowls of cereal, hoping that the carbs and milk would help knock me out. I abstained from sleep meds, craving natural sleep. But unfortunately I tossed and turned all night. I have learned since yesterday that it's actually pretty common to have some sleeplessness after this eye surgery, so that is comforting. I'd sure like to have a good night's sleep without resorting to four gin and tonics tho. My energy level is generally back to normal, though I went easy on both my running pace and weight lifting just in case.

I ran in to work again today, and practiced viewing the world from a wider gaze as opposed to my old pan-and-scan techniques. It's working, and it was a lovely run in, with no twisted ankle. Interestingly, my double vision does creep back every now and again, especially when I'm tired. During the day, at worst I have about 5 degrees of double vision, about 10 degrees off from center, and it's really just a phantom, not the obvious, persistent, frustrating double image like the days before surgery. However, when I'm tired, like last night, it widens to about 40 degrees of double vision across the center of my view. I notice it changes too depending on focal distance. I am more apt to have double vision on objects closer to me than farther away. As I sit right now, I appear to have no double vision.

Something else that is more apparently affected by my tiredness level is my nystagmus (eye jitter). It is indeed better when I'm awake and alert, and I can actually focus on an object for a good few seconds before feeling the urge to drift. I can't tell you how amazing this is for me. It is a massive change. Oddly though, when concentrating on an object, I'm more aware of any double-vision. However, I also note that when I'm tired, like last night, the nystagmus goes out of control and, even with my eyes closed, I can feel them wildly jerking around. WORSE than before surgery. This of course makes it even harder to sleep, when I'm trying to be super still and feel these involuntary muscle spasms in the most sensitive spot. Apparently there are some exercises I can do to help this too, so when things settle down in the next month I will start exploring that in more detail.

On a positive note, now that my eye is clearing up, I must say I'm really really enjoying the sight of two straight eyes looking back at me in the mirror. It is a subtle yet powerful change, and, full disclosure, is one I yearned for my whole life, and never ever thought I'd see. And now it is THERE. However much I complain about the capriciousness of depth, I can still look in the mirror and BAM, remember that the immediate, visceral benefit of this surgery is right in front of / behind my nose. I will get into the psychology of all this in more depth later, but I already feel like some internal, super squishy emotional changes are happening.

More on this story as it develops. Have a great weekend, everyone.

As a note, For those interested in learning more about gaining binocular vision later in life, I encourage you to read this fabulous book. This is what got me started down this road, allowed me to learn of the treatments available, and gave me some of the language and perspective to describe my recent experiences. Check it out -

Fixing My Gaze: A Scientist's Journey Into Seeing in Three Dimensions
by Susan R. Barry

http://www.amazon.com/Fixing-My-Gaze-Scientists-Dimensions/dp/0465020739

I will discuss this book more in future posts, but I would not be here today without the inspiration and influence of this book and its wonderful author, and want to make sure she gets her due.

Another lousy night of sleep last night. I even took a Sominex, and so this morning feel like a casualty of a Keith Richards after-gig party. I swear all the grandiose origin stories about the onset of a zombie apocalypse got it all wrong. If we all turn into the walking dead it will be because of a collective addiction to over the counter sleep medication. The. Worst.

I tried lots of relaxation exercises and such, and reinforced the truth I already knew about myself, in that I totally suck at quieting my mind. I don't even realize it when I'm wandering off my mantra until I'm half a mile down some mental digression wondering "how the heck did I get here?" I think meditation would be a good thing to work on. I've long wanted to, but always leaned on running and yoga to help me get square in my mind. I think I might try again to work on meditation. It would be good for me, especially at a time of mental upheaval like now.

In thinking about it, I chalk up my sleeplessness to a caustic cocktail of the following:

1) excitement in my brain about all the recent changes, plus my anxiety about wanting depth so badly (and tying it to a good night's sleep in my mind)
2) hangover from general anaesthesia
3) hangover from 5 nights of sweet juicy percosets post-surgery
4) lack of exercise

I will strive to work on 1 and 4, accepting that 2 and 3 will pass.

The presence of depth in my vision does indeed seem to be related to sleep. I only had it for a little while yesterday, and have not had it yet today. Yesterday, I was waiting for the bus, noting that I had no depth, and all it took was to look at someone's quirky yellow hat for a surge of nausea to take over. I then noted that the woman standing behind the yellow hat wearer was looming in that special way. I then enjoyed depth during my bus ride, and it went away by lunch. Oh well. I am getting better about my anxiety related to depth, especially upon reflection on what my surgeon said regarding further mental adjustments happening after I resume wearing my contact lenses. Even my super-snazzy Zeiss lens glasses distort my view, so I imagine that exacerbates my brain's confusion about its changing input.  It is what it is - the motto of the two thousand teens. I think if depth does go away I will seek out vision therapy to help bring it back. It's too wonderful to let go forever, and from what I've read there is plenty of evidence that vision therapy has helped people retain / regain depth perception. Here's to hoping.

But I am REALLY enjoying my lack of double vision. There is sometimes a teensy HINT of it still, but it's fleeting and most prominent when staring at a bright light, but most of the time my experience is of a single view. Since my left eye is still worse than my right, there is an area on the left side that is still a bit of a mystery compared to the right, but it is utterly GLORIOUS to be relieved of that constant annoying secondary image.

In an effort to jump-start better sleep tonight, I resumed my routine of running in to work today. Since my eyes are more light sensitive, that means I couldn't wear my glasses. Yes, I went commando. I've done it before so wasn't worried about it, and generally did fine. As I sit here, I feel INFINITELY better, and I will run home as well, and try to lift some weights tonight. Since I didn't have depth on the way in, running was a familiar experience, though I tried to take the lessons learned from having depth and imagine objects and people as discrete things the way I saw them with depth, and this actually helped. Also, now that I have more or less a single view, I found I could focus less on the details and more on the overall landscape. This made navigating the sidewalks actually easier, but I also found I reverted to my old methods at crosswalks and such. Given that I need to be super cautious, that's probably ok. But on one straight-away I tried to really zone out on my vision and cast a wide gaze, and was feeling good about it...

...until I turned my ankle. D'oh!

I was able to walk it off, and I note it is not swollen. I have a trick left ankle and have turned it countless times. But here I was trying to cast a wide view and getting tripped up by NOT focusing on the details in front of me. Oh irony, you mischievous strumpet.

So, the period of adjustment continues, and will continue to do so for a while. My follow-up appointment with my surgeon is next tuesday, and I look forward to hearing about progress. The eye is a little less pink today.

I should add that people continue to be incredibly kind and supportive to me through this whole process in a way that is quite remarkable and wonderful. At work, at home and online. This part of the experience is one I came very close to avoiding altogether, as I was tempted for whatever reason not to be open about this experience. Probably self-consciousness. But I'm so glad I decided to be open about it, as it is shaping my worldview in a wonderful way, on top of everything else that is happening. Thank you all for your kindness and support. I'm really enjoying sharing this journey.

One week after surgery, there's still some pink in the eye, but people at work have to deal with me and this whole experience has turned me into Captain Overshare anyway, so here ya go -

So what the heck did they do to me anyway?

Since I've had some questions about it, and I can't sleep, and it's more or less officially been a week since surgery, I figured I'd provide a bit of detail about the actual procedure I had done neigh upon seven days ago.

The condition that I had - well, one of them anyway - is called strabismus, or a misalignment of the eyes. While this condition is annoying enough in and of itself, it can contribute to at least one of the other conditions I have, nystagmus, an involuntary jittering of the eyes. But more obviously, it causes a lot of confusion with my social interactions with people, as I regularly run into situations when people don't think I'm looking at them, or are confused by my appearance. I will get into the whole topic of living with my various eye conditions - and how they've shaped me as a person - in another post later this week. It'll be a doozy so it may take me a bit to complete.

The surgery I had done last week is alternately called "strabismus surgery", "eye muscle surgery" or "eye alignment surgery". I had it performed at the illustrious Massachusetts Eye and Ear Infirmary, though my surgeon was officially affiliated with Boston Children's Hospital, as it's much more common for this procedure to be conducted on children than adults. Typically they try to correct this kind of thing in childhood, but in my case they didn't, and my history with the medical profession related to my eyes is yet another blog post to come.

The specific procedure involves (good time to put down your lunch now) the following basic steps. First, a handy illustration:

No, nothing gory, but before you search for strabismus surgery on Youtube you REALLY should put away your lunch.

Anyway, the basic concept of strabismus surgery is to reposition the placement of the eye muscles so as to allow the eye to point in the correct direction. As far as this layperson knows, that involves the following:

1. slice through the clear outer layer of the eye (called the conjunctiva)
2. detach the muscles needed to align the eyes - my lazy eye drifted toward my nose, so they detached the muscles responsible for left-right movement, known as the "lateral rectus" as illustrated above
3. "loosen" or "tighten" the relevant muscles and reposition where they are attached on the eye to pull the eye in the right direction - in my case they "loosened" the lateral rictus on the inside of the eye (nearest my schnozzus grandius), and "tightened" the one on the outside
4. reattach the muscles to my eye in new places, allowing the eye to be aligned. They did this using dissolvable, adjustable sutures
5. stitch up the conjunctiva and send the poor sap on his way

Simple, right?

It does sound very brute-force in some ways, but remember this is being done on quite the microscopic scale by human beings with mechanical instruments. Steady hands indeed.

I was under general anaesthesia for the main event, which was actually the most nerve-wracking part of the whole affair for me. I am a wee bit nervous of being put all the way under, as I know it can have nasty side effects, not the least of which is not waking up, and I made the n00b mistake of reading up on general anaesthesia on the web, and anything called "medically induced coma" is not going to put my mind at ease. But statistically it's safe and so I sacked up and took the risk.

So last wednesday about 10:15am I rolled into MEEI and got checked in. I hadn't eaten or drank anything since the night before (save a small cup of black coffee when I first woke up, which they allowed). I got a slick - pre-heated - patient robe (yes, MEEI is a 4-star affair) and sidled on up to bay number 1. I lay out on a gurney and a phalanx of nurses and other folks introduced themselves to me. Eliza was there too, and one of them, while attaching leads to my body, argued that I was too skinny and that Eliza needed to make me a massive dinner every night. I encouraged Eliza to take their pedigreed medical opinion to heart. At this point I started to feel weird again, because, well, I was mostly naked on a hospital bed with wires attached to me, able to hear my own pulse from a nearby machine. My surgeon came in (names suppressed as I haven't gotten permission) and very kindly reviewed the surgery with me and confirmed I was good to go, and seemed genuinely excited about the whole thing. I love her. Then they wheeled me down the hall a la so many episodes of taut medical dramas. This of coursed caused innumerable associations to references to "Dr. Allcome" and various other hyper-realized medical emergencies, but hell I was strapped to a board and ready for ignition so I wasn't going to let a lifetime of pop culture give me the heebie-jeebies now.

They parked me in the surgery room, which wasn't altogether different from bay number 1, and put a nice blue bonnet on my head. The anaesthesiologist came in, stuck me with an IV, and said that I would start to seem very relaxed. I noted that I did...

... and then next thing I knew I was awake again.

It was done. And I was surprisingly alert, and enjoying my new view for the first time. It was blurry as I had no corrective lenses, but I could tell right away that my double vision, that frustrating clash of imagery that I had become so accustomed to my whole life, was different. The world seemed more dome-like somehow, as I was getting a wider view out of even my good eye.

My surgeon came in and did some preliminary tests. They had put in adjustable sutures, and wanted to know how well the aligned the eyes, and whether some fine tuning was needed. I determined that I still had a bit of double vision, and that when they covered my left eye, then my right eye, then my left eye, my eyes did move to focus on a point of light, so clearly some tweaking was needed.

Here's where the real fun began.

First, they asked Eliza if she wanted to stay. She said she did. They next said they were not responsible for her passing out. I assured them that she is tougher than I am (I enjoy calling her "pioneer woman" as she clearly could have settled the West by herself), and they proceeded.

They did not put me back under. They put in some "numbing drops" (quotes deliberate), and attached to my eyelids what can only be described as "clockwork orange eyeclamps". They then reached in with their tiny instruments, undid the stitch in my conjunctiva, and nudged the sutures around. I had the sensation of my eye being moved around like you'd move a camera lens, an odd sweeping motion, independent of my right eye.

And there was another sensation - stinging white-hot pain.

But I channeled my inner yogi and breathed through it, because they had tiny instruments in my eyes. I told them it hurt like a mofo, and they applied more drops.

How was I not completely freaking out at this point, you may ask?

a. they had tiny instruments in my eyes and I was afraid to move
2. it hurt like hell and I was kind of focused on that
d. it was all oddly fascinating and I had quite the close-up view

After a few minutes, they assured me I was doing an awesome job, and closed me back up. The whole thing took about 5 extra minutes. All in all, that to me is FRIGGIN AMAZING.

I was able to relax for a few minutes as they watched me closely. My surgeon did some follow-up tests and we confirmed that the alignment was improved.

After a few minutes I looked over at Eliza, and noticed right away that the bedrail seemed to ... loom closer to me. "Something's different" I said.

I did not want to hope, but I had reason to believe.

I put my hands in front of my face, one in front of the other. The hand nearest my face ... loomed closer in a way it didn't before. I switched hands, and started to giggle.

"Something's different" I said again.

As I continued to giggle, the nurse looked askance at me "ok, you're starting to freak me out" she said.

"No, this is good! This is amazing!"

Again, I did not want to hope for this. I questioned what I was seeing, but all I can tell you is that right away, in that moment, it sure as hell looked like closer objects were viscerally CLOSER in a way they hadn't been before. I WAS SEEING DEPTH.

In a matter of minutes I was out of the bed, clothes back on, being wheeled in a chair back to registration. That wheelchair ride was amazing, as objects, walls, ceilings swelled toward me in a new and magical way. My brain was going "TILT TILT TILT" as it tried to process it all. I stared around at everything, awestruck.

The revolving doors were astounding. The world outside forever (hopefully) changed.

We'll see, anyway. Ugh, inadvertent visual pun #136. I had wonderful depth yesterday, but as you can see, I am not having good sleep tonight at all. I've already been up for a few hours and decided to just get up and write for a bit in the hope that would tire me back out. Off to go see if it worked. But I will remember that if I do not have depth today as a result, it is not a failure, it is not a sign that it is gone forever. It is likely a sign that I should get some exercise tonight, drink a glass of warm milk before bed and do my best to set myself up to sleep well so the brain can do the critical work of processing all the new input and be ready to take it all in the following day.

And in closing, I would like to say that my whole experience with Mass Eye and Ear was fantastic. The staff were capable, confident, and also KIND, which is a label that not all medical staff get to enjoy. They were cool, and what they did for me is nothing short of a miracle in my eyes (ugh, pun #137), and I am forever gratified for their services and in their debt. I want to give my surgeon a thank-you present when I see her next week. Is that inappropriate? I thought something nice like a gift card for a dinner for two or something. I'll figure something out. Anyway, the whole thing was really a great experience, and I was home with plenty of time to go pick up Lyra at school. Totally amazing, it may as well have been drive-thru.

day 7: back at work today. I took the bus in today, and enjoyed the full-depth experience on the way in. I still have it pretty much now as I sit here. The effect is starting to get more subtle when I do have it, so I think I'm more or less just getting used to it, or integrating it into my old-school view. It does still kind of come and go, and thus it being more subtle and less of a big-bang like it was day one is a bit confusing to me. If I ever have any doubts I can look down my shirt front to confirm whether or not it's there. And even that is not 100%. The bus was very cluttered and busy, and people who were close to me felt even more "up in my grill" as usual. I also again felt very boxed in, as the sides of the bus are much more prominent now.

One interesting note - I was standing by the back doors, and there's a bit of plexiglass right in front. As I looked out the side windows, I mistook the reflection of the door on the plexiglass for another window, due to the fact that I was interpreting depth from the reflection.

I have been wearing sunglasses outside as I am a bit more light sensitive now, and am thus wearing NO corrective lenses. It's quite remarkable that depth can come even without that correction - there's enough information (even with my really lousy left eye) for my brain to interpret depth.

Oh yeah, my vision stats when optimally corrected - 20/80 right eye, 20/200 left eye.

I do wear glasses like right now when reading, but I actually prefer to not wear them right now as I get my full peripheral view (improved since surgery) and depth is much more dramatic. My prescription is such that even with the super snazz Carl Zeiss lenses I splurged on in the last year (a third the thickness of my old-skool coke bottle glasses) the view is still a bit distorted. I will not be able to resume wearing contact lenses for a month, and apparently that will be another full wave of adjustment for my brain. But I reaaallly can't wait for that. I lurve my contact lenses.

I didn't have depth yesterday except for very subtle cues. I hadn't slept well the night before and was in my head about the whole thing yesterday, so found myself again very depressed and afraid that I had lost it forever. I know, I really need to get my head around that.

I talked to my surgeon yesterday, and asked her what to expect of depth and hearing in general. She said that retaining / obtaining depth from the surgery is in fact very rare, and the fact that I got it at all is a testament to the flexibility of my brain. I've always considered myself highly adaptable so this was good to hear. She did say that in cases where depth was obtained, she found that it did stick around, so that was very comforting. However she said there's not a lot of clear information about why and how the brain works to retain it, and she for one does not have a lot of faith in "vision therapy", though admitted that was a bit of a polarized debate, and she sat on one side. I'll discuss that in more detail in a future blog as it's pretty interesting. She did say that if I wanted to pursue vision therapy, that it would not hurt my eyes, so I should do whatever made me feel productive.

She also reminded me that my eye may drift a bit as it heals up, and that what I see today may not necessarily be its final position. However, she did also say that they were generally very happy with the position of my eye and that this surgery tends to have great durability. It is however also possible that my eye will drift back over time and that I might in fact need this surgery again. I sincerely hope that won't be necessary, but only time will tell.

My conversation with her really reinforced the fact that this whole adventure is in fact a process and not a big-bang. She said there will be another round of adjustment when I resume contact lenses, and that it may take weeks for my eyes and brain to sort each other out anyway. So I will try again not to get depressed or anxious, and accept that this all will take patience and time to figure out. I also remind myself that I am exceedingly lucky that this works at all. It has been hard for me to wrap my mind around, as the acquisition of depth DID feel like a big bang - BOOM, it was THERE. And then in the days following, it's come and gone and gotten more subtle, and the uncertainty has caused me some anguish and struggle. It is very hard to have something so miraculous come and go. I wasn't ready for it and I haven't handled it well. But I must maintain perspective. I have people in my circle who are dealing with REAL uncertainty in their health, where things do not look good and they need to exert strong mental and emotional effort to remain calm (or so I imagine). And here I am struggling between the uncertainty of things being more or less awesome. I don't presume to know what these people in my life are dealing with in terms of this real uncertainty, but I definitely have a bit more empathy for the position that they are in, and how important it is to maintain a sense of perspective and strength. I also don't want to start a pity party, or diminish other peoples' true problems with what kind of feels like navel-gazing in some ways.

I realize in the end I am focusing the least on the most apparent and obvious benefit of this surgery - the fact that I can lock eyes with someone and really lock eyes with them. That is what brought me into the surgery room in the first place. The rest will take time to sort out, and I am coming to a place of acceptance for that.

On the other hand, I went to a yoga class yesterday and the instructor said "oh, a friend of mine had that surgery last year and now he's driving!" and all i can say to that is "bwahahahahahahahaaaa". As a note, my balance is still really wobbly and I got light-headed a few times, but I really wanted to go to CHILL OUT, and that helped. I had a great night's sleep last night and things are looking much brighter today, literally and figuratively.

This is going to me my last direct-to-facebook posting, as I have indeed started a blog to track this journey over time, since it will clearly be an ongoing thing. I will update facebook when there's new posts to show, but I hope you will all join me for the ride.

Now it's time to STFU and GBTW. :)

and today... originally posted to Facebook

Day 6

Good morning! Four more glorious hours of depth yesterday. Got out for a while to enjoy the lovely day and marveled at the beauty of tree branches, and the volume of space between trees. Buildings seem taller, trees seem taller, but power lines seem to hang lower and more ghastly than before. The sensation of people standing distinct from the background reminds me a little bit of a video game - when you're used to 2d platformers, then getting into your first 3d environment like Grand Theft Auto, which I've played for a total of like 10 minutes, but I remember marveling at how each individual person was their own entity, not just decoration on the background, but somehow more distinct. I'm not really a gamer but I keep saying things like reality is the ultimate 3d simulation. So dumb, but the language is limited.

I don't have a lot of new discoveries from yesterday, just building upon what I knew before, and in the hours between depth I'm trying to relax and remember what it was like. I did not sleep well last night, so I wonder if I am rested enough today to have it come back during what appear to be the golden hours of 10am to 2pm. But in general what I really marvel at is the fact that I'm surrounded by the same stuff as ever, the world is the same world as it was last tuesday, but I have the blessing and opportunity to see it all so differently. Something new and marvelous has been added to the world that I knew, making it again magical and amazing to behold. This is not an exaggeration.

 My eye is a little less red today, and discomfort has decreased to the level of "contact lens in too long". My energy, despite a lousy sleep night, is starting to come back and I am antsy to exercise. But I am home again today because my eyes do still get tired very easily and I cannot read for very long. I am observing also that my nastygmus - the involuntary jittering of the eyes, is absolutely more stable now. That too is miraculous. I'm a lucky guy. I hope everyone gets to have an experience so amazing.

My single biggest bit of advice from this experience - ALWAYS GET A SECOND OPINION. Doctors are generally well-trained and capable, but are as subject to bias as anyone else. Don't let one person, however knowledgeable and pedigreed, steer critical decisions of your health and well-being. After many years of my eye doctors telling me there was nothing they could do for me, I even DID get a second opinion by going to Mass Eye & Ear in the 90's, and they said I was fine with my other doctor. But thanks to Sue Barry, author of "Fixing My Gaze", for reigniting my curiosity of how I could change my situation, and for MERSI (mersi.com) for their optimism and enthusiasm toward treatments. Have a great day everyone. Hopefully there will be more new observations tomorrow.

March 31, 2013, originally posted to facebook

Happy Easter, Happy Passover and happy sunday to all. Now on to myself!

 Day 5: another new experience - talking about myself so much. Not used to it. I don't think I can keep it up forever, but since all this is too exciting for me not to share, and since the wonderful encouragement continues, I will stoically find a way to muster on! *cough*

 Anyway, I had four glorious hours of depth yesterday. It's suggesting itself a bit this morning so I want to make this update brief to take advantage of what appear to be the golden hours. It seemed to go away when I had a nap yesterday and never came back, but I'm keeping the faith and have rounded the corner in terms of my attitude toward it. This is all miraculous.

A few notable observations:

 - a fried egg looks like the surface of the moon

 - being in the car is a different experience. The frame of the car seemed much closer to me, and I felt much more contained than previously. I wonder if I will experience claustrophobia from this. I don't tend to suffer phobias, and seeing as that my biggest childhood fear was being in a house fire and my house burned down senior year, you can say I'm more afraid of having a phobia than anything, as it will inevitably come true. I'm phobiphobic.

 - my venture outside yesterday was to look at an open house (our 3-year epic journey to buy a house in the Boston area is another sadsack blog for another time) and found incredible challenge navigating the other visitors and actually trying to have a critical eye on the house. I got quickly overwhelmed, and felt much more comfortable standing in one spot and letting folks walk around me. We didn't make an offer

- however, having depth made navigating a space easier in some ways. Before, it was much harder for my brain to prioritize objects in a room, especially in motion. The thing in the foreground had the same importance as those in the background, even with the secondary cues available to me. I tend to look at one thing, then another, then another, then another, then figure out how to move. This makes things like grocery shopping during busy hours incredibly stressful. I'm looking at you, Market Basket. I know, that place is stressful for everyone. Anyway, when I see with depth, I have much more of an idea of the relative position of objects in the room, and more helpfully, the space available between those objects. I can plot a course more easily, and I can prioritize objects more effectively. If the depth sticks around, I think eventually this will make navigating spaces much much easier to do. My understanding is that people with binocular vision tend to fix their gaze wide when navigating a space, or driving or riding their bike, taking in the whole scene and understanding their place in it as opposed to focusing on details. I have had great trouble with this to date, and am sincerely hoping that I can learn to do this.

- points of light seem much brighter, and I have a sensation that the photons are flying at me. I have no idea what that's about. That might also be because both eyes are focused on the same spot, thus maximizing the light that comes from those spots.

 - sometimes the depth feeling strikes me like a shimmering. The object is not quite solid. I expect this is the brain figuring stuff out.

 - even when I don't have depth, I often have a consistent low-level nausea, especially when I'm concentrating on an object. I assume that's my brain continuing to figure things out

 - it is very weird to talk about my brain as a separate entity from myself, but here we are.

 - water in motion is so gosh-darned fascinating I could stare into the sink for hours. Pouring water or coffee is very cool too, it really seems to stand out

 Other than that, I'm out of percosets, but thankfully the pain is subsiding to "discomfort". My eye is back to looking fire engine red, but thankfully no crustiness. Until today I could really feel the sutures in there, like sand under the eyelid, but I have gotten used to it and don't think about them anymore. I have some interesting exercises to do, and folks are very kindly referring to people who could help me I will chat with my surgeon tomorrow and find out what she sees as next steps. I have a checkup with her next week. Hopefully by then I will be cleared to wear my contact lenses again and then things will really rock. I'm contemplating going back to work tomorrow, but my eyes do get tired very easily so I wonder how it will be to be back staring at a monitor all day. I will have to take frequent breaks. Good excuse to get up from my desk and go hassle people in person. We'll see how today goes. Anyway, for those celebrating today (or this week), have a wonderful holiday. Everyone else, get outside, looks like a good one in the making. Love and more soon.