Thursday, August 11, 2011

All That Surrounds Me

Seeing 3D
I can be on the phone or doing some activity, when my brain suddently decides to see everything in 3D.  I can't ever seem to replicate it, it just clicks on randomly.   From my living room, my kitchen is suddenly on a downhill slope, and the dishwasher becomes stunning.   The countertop is a slice of space layered upon other slices and everything has dimension.  The walls, the floors, it all is wide from where I stand, and then narrows down, down to the point I am looking as if in a tunnel of space.  I always go back to that famous Van Gogh painting of his little bedroom in Arles.  The way the chair legs meet the floor, and the pictures on the wall seem to lean over his bed, that is what my room becomes; odd, but beautiful, everything a bit unfamiliar and out of context.  I get these moments infrequently and they are usually when I am alone in my home.  Maybe that is where my binocular brain feels safe to come out and explore!  I am less afraid now of being whole.  I used to hide behind the corners of my eyes.  What a wonderful place to be when I can see in 3D - I am immersed!

Have you ever been away from your home for a period of time and then came back to see that something was different?  A shelf, a closet, whatever it was.  My mum used to always be changing things in our home, moving pictures and changing the mantle decorations.  When I would go away to school or on vacation or whatever, I remember coming home and seeing the same thing in a completely different way...  That is how it feels when my mind turns on my binocular vision...everything is the same, but completely different at the same time.  Objects are resting in new ways, chairs are standing at strange angles...  I have gone back to childhood books like, Alice in Wonderland and Peter Rabbit with a whole new appreciation.  Peter Rabbit does a lot of things in space!

Friday, March 4, 2011

I am not sure I want to leave the place I have always been...

I got a call from someone at my vision therapist's office the other day.  They said that it was time for my "progress evaluation."   I am looking forward to going back.  Since my surgery, I think my eyes have stayed pretty straight, but for the occasional crossing.  But I am afraid...  I know after all the blog entries I have made expounding on the wonders of seeing in 3D, I sound a bit like a hypocrite, but this is the truth.  I am actually afraid of awakening the binocular center of my brain for fear that I may not be able to shut it off and if I can't shut it off by suppressing, then I run the risk of seeing double.  I have heard that you can be locked in a permanent state of diplopia or double vision. I have just started a new job that requires my full attention and I fear that embarking back into the world of vision therapy to awaken my eyes would open a can of worms.  I realize I need to talk to my COVD Vision Therapist, Dr. Carl Gruning, who would know exactly what I should do.  I know how weak my binocular vision is, the second image that I can call into existence if I focus is horizontally higher than the other image (indicating that is where my eye is pointing) and the second image is faint and hazy.  I have heard that people who get a prosthetic body part, after years of managing without one, sometimes prefer to go without them, they have adapted. My brother worked for years as a social worker for the deaf and he used to tell me that ocular implants are often frowned upon in the deaf community because the person doesn't see the need, they have adapted.  I am not deaf, and I don't need a prosetic limb, but I definitely feel having lived in a flat world all these years, some trepidation about leaving my monocular world behind completely.  It is all I have known, I manage perfectly fine. I have had the chance to visit the spacious world as most people see it and it is great!  But I can come home to what I know and not feel too bad that I don't get to live there permanently.

Tuesday, September 14, 2010

Shut Up About Your Eyes Already!

So today I had a business meeting. When I sat down at the restaurant, I realized that the person I was meeting with was directly in front of me slightly to the right, which is not good in terms of my eyes looking aligned. I need people to be slightly to my left for my eyes not to look crossed (or so my surgeon told me...) I wanted to put my best foot forward, so at the risk of looking like a control freak and seeing the seat to my right was free, I said "I am going to move to this seat, as I have an issue with my eyes and this is more comfortable for me..." The woman I was meeting with was kind and said, "whatever makes you comfortable..." So my meeting went on and things felt alright, however at the end of the meeting one of the women I was meeting with started talking about her vision and how she couldn't read the dessert menu with her glasses on. I don't know what it is, but I guess I still have so much to say about my eyes, so I launched into the fact that I was stereo blind and started talking about my surgery despite the little voice inside me saying, "shut up about your eyes already!" I just kept going! They were very gracious and seemed intrigued, but I walked away realizing that I should have kept this quiet, ugh, why do I spill over onto myself sometimes? Why I thought this was an appropriate time to go on and on about my personal quest for stereo vision I don't know! 

Sunday, May 9, 2010

Straight Eyes, Two Door Knobs

My binocular vision is still very weak. When I wake I can conjure up two door knobs on my closet door. One is very faint and elusive, it stays for a moment, drifts away and then I see one door knob again. This is my brain's ability to hold onto binocular vision. Fusion; seeing those two door knobs as one is my ultimate goal (I can suppress one door knob and get one, but my goal is the ability to merge the two). The brains ability to take two images and make them one is a magnificent process that we take for granted every day. Unfortunately (and fortunately), I am expert at suppressing, it has been the way I have kept my visual world in order my entire life. As we grow in life, we hopefully shed the traits or behaviors we no longer need. Things that used to serve us, in time can hold us back. This is my sight now; an old way of seeing. Sometimes I talk to my brain, as if it were something apart from me. I tell it to let go of the single focus, that it's safe to see with both eyes. Sometimes it feels like going down a hill too fast, I feel like I am loosing a part of myself. It is an interesting conversation to have, like talking to God. I often think that our brains and the universe are the same thing. Infinite and mysterious.

Has anyone out there had strabismus surgery or vision therapy and had it not only change their vision, but their entire life? How did it change you? Did it change you in social situations? Did it change how you feel about yourself. I would love to hear how it changed not only your way of seeing, but your way of being.

Friday, April 16, 2010

Final Exam with Eye Surgeon

Yesterday I went to see Dr. Campolattaro, the surgeon who did eye surgery for my Strabismus four months ago. He said that it would take about 3 months for the eyes to 'set' and the muscles to fully heal, so here I was four months post op ready to hear how he thought my eyes had healed.

I was excited to see him, he is a wonderful surgeon and one of the nicest people I have ever met. I think my eyes look great, but I do see that one crosses in occasionally. He thought they looked great and after fully examining me, said that I have something called "Age Related Crossing," which he said meant that because my reading and close up vision is is not that strong due to age, my eyes are crossing in when I look at things within about 2 feet of my face. The moment I look at something out of this 2-3 foot space, my eyes straighten out. He said that he could do another surgery, but I would run the risk of going wall - eyed, even if he could do the surgery. He wasn't sure that I would have any decent muscles to work with given my three previous childhood surgeries, the first two for horizontal correction.

During the exam, Dr. C asked me to put on my reading glasses and sat about 2 feet in front of me. He told me that as soon as I had my reading glasses on, my eyes straightened out perfectly in that 2 foot zone. I actually noticed this too when I was home in my obsessive cataloguing of post - op photos taken on my Mac. Whenever I was wearing my glasses in the photos my eyes looked perfect.

Dr. C suggested that when I have business meetings, or out to dinner where someone is going to be sitting that distance, to wear a 1.25 pair of eye glasses and it would keep them aligned. The final takeaway from our appointment was that it was more surgeries, he said he didn't want to risk anything and that they really looked great.

I did bring up Vision Therapy and Dr. C's said not to pursue it, as it would not help my crossing. We all know there is a divide between Optometry and Ophthalmology, which is unfortunate. It would be so great if the two camps could work together in the way say a Physical Therapist works to build or rehab before of after any other kind of surgery, but for now this doesn't seem to be happening. I don't want to sit here and lament on this, but just to tell my story and hope anyone with vision issues will explore all options.

PS: Walking Chester today, we walked home over a steep hill. I stopped and turned to look back down the ridge. It was breathtaking-all the layers of space going down the side of the hill made me happy to be alive. Seeing distance still fills me with joy!

Friday, February 19, 2010

The Gift that Keeps on Giving

I am writing about a few friends of mine who all share vision issues. Through my Strabismus, I have come to meet many people with visual conditions and a few of them it turns out are incredible artists. Here they are:

Johnny Rozsa's book Untouched is amazing. Where else can you see Rick James poolside and Winona Ryder on a tractor? You can purchase it through Glitterati. While we met years ago in the Tompkins Square Park Dog Run, our first conversation was about our eyes. He is a wonderful photographer and one of a handful of people that make me laugh until my stomach hurts.

Katharine Weber's new book True Confections is absolutely wonderful. It is about a candy factory in crisis in New Haven, CT. I am enjoying it tremendously.
Lili Anel is a singer and songwriter who shares my condition, Strabismus. (Click on her name to hear her.) She has a beautiful voice and I love every song on her latest album. You can buy it here or on iTunes.


Friday, January 29, 2010

Alcohol and Strabismus

Don't Mix!
I have never been a big drinker. Maybe in college I had my fair share, but I have always been a bit of a lightweight and not terribly fond of the feeling of being tipsy.

Yesterday I was at a lunch meeting and had a glass of wine and then in the evening at dinner I had another glass of wine, which is really unusual for me. As I went to sleep last night I had a slight feeling that this was not good for my eyes. I woke and had a bit of a headache (lightweight hangover) and you guessed it, my eye is crossing!

Part of me is annoyed by this, as I am seeing I have to start living like a Mormon. I don't want to live like a Mormon, no offense to Mormons, but I want to be able to stay up late occasionally and have a drink now and then without my eyes going haywire.

This all reminds of of something. I am allergic to seafood. I can eat lobster but mollusks and most other crustaceans make me deathly ill. Linda Blair in the Exorcist comes to mind.

Occasionally people will ask me, "Oh, that is too bad, don't you MISS it, I mean I just LOVE OYSTERS..." For a moment the image of eating a juicy delicious oyster comes to mind, but then my Pavlovian response is me seeing myself violently ill.

Now I associate imbalance in my life (staying up late, drinking over one glass of any alcohol) with crossed eyes and like my allergy to seafood, I don't want to pay the consequences.

This might not always be the case. As I get better and better at learning to use my two eyes at the same time, I may not be so easily thrown into crossed/wandering eye land, but for now no more alcohol.

Wednesday, January 27, 2010

Heather's Unofficial Straight Eye Protocol

Chester my Pug

Eyes have been aligned for 4 days in a row. For the past month I have been paying close attention to what keeps them straight.

In addition to vision therapy once a week and daily exercises at home, I have come up with a few things that I need to do.

MEDICAL DISCLAIMER: I am not a MD and none of this information is medically supported. I am just a strabismic gal trying to keep my eyes straight, see in 3D and have found these things have worked for me. Please do not embark on a salt diet or exercise program without clearance from your own MD.

Heather's Straight Eye Protocol:
  • Sleep! Without any disruption in sleep pattern. I need 8 hours, but I have found it essential to stick to a bedtime and wake time. I can't go to sleep at midnight if I normally retire at 10 and expect to make up for it by sleeping in... My eyes cross if I do this! Same hour to bed, same hour to wake makes my eyes not deviate!
  • Water! I have asked 10 people with strabismus if they have low blood pressure and every single one said yes. This has convinced me that staying hydrated with 5 glasses of water a day is essential and to get plenty of...
  • Sodium! My MD told me that with my blood pressure on the low side putting more salt on my food is fine. So, I do this and it makes me feel better, but please check with your own doctor before increasing your salt intake!
  • Exercise! Gets my blood flowing and my muscles relaxed and the movement through space in the outdoors opens up my peripheral awareness. I should note here that I have been fairly athletic all my life. Swim teams, marathons, triathlons, etc. So I do not find extreme fitness tiring, but invigorating. If you find exercise tiring, then your eyes will probably deviate. I suggest cycling as the best option. There is no impact and it gives you a terrific chance to see all around you as you move through space.
Please also note: I had extreme strabismus for my entire life. No amount of water, sleep or exercise would have straightened my eyes. I write this having just had 2 years of vision therapy with a COVD certified optometrist as well as recent adult strabismus surgery (followed by more vision therapy). If your deviation is as severe as mine was, 80-90 PD, these tips will probably not help. If on the other hand your eyes are sometimes straight or if your misalignment is not severe, then these things might work for you, as they have worked for me. I do not write this to give people a false sense of hope, but rather share what seems to be working for me.

Wednesday, January 20, 2010

AM Crossing, PM Straight

All excited about my new water theory I woke this morning and drank my big glass of water only to look and see my left eye was crossing again. When I did my Brock String exercise, the string was crossing everywhere! I did everything I could to look at the bead closest to the wall but the darn string kept crossing. At one point I swore I was looking at the furthest bead and the string was making an X at least four inches in front of it. I could not uncross that string. Which told me of course, that this is where my eyes were focusing.

I thought a walk on the beach would help. I drank some more water, harnessed up Chester and took a long walk along the beach at low tide. Beautiful morning. I focused on the estates that dot the coast along the harbor and then shifted my gaze back to shells near my feet and then back up again towards the houses figuring that it would help to do some near and far focusing.

After that I went home to do some work, and checked to see my eyes which were still crossing. After a lunch meeting I finished up work at about 5:15 PM.  I wonder why my eyes straighten in the evenings? My water theory is not holding up here! Or maybe it is...I don't know. Perhaps this eye wandering is much more random and I am trying to make sense of something that really has no pattern or cause. I have vision therapy tomorrow and I am going to ask the therapist what they think.

Monday, January 18, 2010

Question for anyone with strabismus...

Do you have strabismus and have ever been told you have low(ish) blood pressure or had a dizzy spell upon standing up too quickly? I would like to hear from you. Please leave me a comment or send me an email.

Something incredible seems to be happening. I was a bit discouraged last week by my eyes deviating, so this weekend while running on the treadmill I started trying to think of all the things I did the month that my eyes were perfectly straight. I have been doing my Brock String, peripheral letter chart exercises, saccades with numbers on my wall, red/green exercises, etc. but I also tried to think of what else I was doing or not doing during that month. My optometrist told me that fever, fatigue and fear are three things that can cause wandering eyes for someone with strabismus, but I was well rested not afraid or fevered.

Suddenly it hit me. For the first month, I had a friend who kept insisting that I drink more water, so I did. At my follow up exam my surgeon told me that he wanted me to drink a lot of water to help with any nausea, so between the doctor and my water nagging friend I increased my intake of water substantially.

I have never been someone to drink a lot of water. In fact, I don't really drink any. I drink a fair amount of juice or other liquids like coffee and tea, but never been one to drink a glass of water. In fact, it kind of makes me gag, so drinking it was a chore, but drink I did, about five full glasses a day. I remember feeling actually quite good on the first day, like my body really needed it. But old habits die hard and mine are no exception. I slowly resorted back to my no water routine.

When my eyes began to cross inwards last week I thought, what is going on? How can I change this? What can I do to help them stop crossing in? HELP ME! I may be grasping at straws here, but I can only speak about my own experience with the hope that it might help someone else. I started drinking more water.

It has been three days of five glasses of water a day and I am a stunned to report that my eyes are almost straight again. Here is a photo I just took a minute ago on my Apple laptop. Could the water be helping with this? I know the Brock String is teaching me more and more every day, but could it also be the water?

I have been told I have low blood pressure (nothing serious, but my doc just told me to eat more salt) and I started thinking, could there be some correlation between low blood pressure, water intake and my eyes deviating?

After some informal research I found out that spontaneous adult strabismus can be caused by many factors including a spike in blood pressure. If a spike in blood pressure can have an effect on the alignment of one's eyes, could low blood pressure do anything? I have read that dehydration has serious consequences on the brain. Could there be some kind of connection here?

I emailed three people I know with strabismus, one in Malaysia, one in the UK, and one in Seattle to ask them if they had ever been diagnosed with low blood pressure and all three said yes! (Thank you for your responses!) POSTSCRIPT: I HAVE NOW A TOTAL OF 14 PEOPLE WITH STRABISMUS AND ALL HAVE TOLD ME THEY HAVE LOW BLOOD PRESSURE. Could this be a coincidence?

I would love to hear anyone's comments on this.

Friday, January 15, 2010

Music in the Operating Room

During the adjustable suture part of my surgery I remember being in a round operating room with someone named "Nelson," who the surgeon would instruct to give me more meds every time I groaned with discomfort, which he did beautifully. I can recall almost every detail of being awake while he pulled at the fishing wire like material coming out of my eyes.

One of the things I remember clearly was the music. There was a radio in the operating room and as the surgeon tugged and knotted the wire Kings of Leon's, Use Somebody was playing in the background. The sound was coming from an area around my feet about 10 feet away closer to my right foot from a boom box on a shelf. (Funny how I remember things like this!) Despite being horrendously overplayed on the radio, I really love this song and despite the circumstances I was under it actually put me in a good mood. For a moment I felt giddy lying there.

Weeks after my surgery, I was running on the treadmill listening to this same song and never having listened that closely to the words, I stunned when I heard the first line, "I've been roaming around always lookin' down at all I see..." Here I was having had Strabismus surgery to correct my eyes and one of them was actually looking straight down! The song made me sob and had to push pause on the treadmill to catch my breath. My friend Nicole, running next to me was like, "Oh my GOD are you alright?" The memories of hearing that song again and what the words said made me incredibly emotional. I thought about the success of the surgery, how lucky I was to have it go well and it being over and how I am no longer, "lookin' down at all I see..."

Then a few days ago I heard this on NPR's Sound Check with John Schaefer, Soundtracking Surgery. The brilliant segment talked about studies that have shown music helps surgeon perform better, improving speed and accuracy. Here is also a link to an article about the same thing in NY Times. Also check out John Schaefer's blog entry, Music and Medicine, A Toxic Mix?

People were calling in to say what music they heard while undergoing surgery, how music is healing and calming-especially the harp and the violin. (I am afraid harp music would have made me feel like I had arrived in heaven, and violin probably would have irritated me.) but they said that if the music is familiar and not necessarily calming, it can also have a healing effect, even if it's Metallica. One woman who called in told of having to endure a horrible song playing as she was having a delivery with complications and it pissed her off. She didn't say anything, but years later still wished she had. I am so glad that I actually had a song that I liked.

The NPR segment then said that perhaps hospitals should ask people what they would like to have playing while they are being worked on. I started to think about this. What if the songs I picked put my surgeon in a bad mood and he didn't perform as well doing the operation? My healing Jazz might be his worst nightmare. I think in my case it worked out well, as I do remember the surgeon kind of rocking out while the song was playing (all this while holding metal instruments over my eyes, gotta love a young hip surgeon!) I think we landed on a song with both liked and it helped us both be at our best.

Thursday, January 14, 2010

Esotropia / Exotropia

It has been almost two months since my Strabismus surgery. While my eyes were pretty straight for several weeks they are now wandering around again. I am pretty tired right now, so perhaps I should make it a rule not to take photos when I should be taking a rest.

My left eye turns in when I look at things about 12 inches from my face and it wanders out when I look across the room. The first photo I am looking close up and the second photo I am looking far away and you can see, my right eye is fixating while the other is ditching the two eyed system.

I still feel grateful because my eyes are so much better than the way they used to look, and my vision feels more natural. The surgeon was right in saying a lot can happen in three months. But again, I am sure with work in VT I can correct this. No one said this would be an easy journey and I know I just need to keep working in Vision Therapy as hard as I can and have faith.

Tuesday, January 12, 2010

Trying to Find a New Way to See With my Brock String

I am at a place where my eyes are much more aligned due to my recent surgery and the work I have been doing in Vision Therapy, so why can't I fuse the beads on my Brock String yet? The therapist told me to shorten the normally 4-6 foot string to just a few feet and only use one bead, which has helped eliminate a lot of the confusion and makes it easier to decipher the feedback the string gives me as to where my eyes are pointing, however I am still not able to fuse the bead. Instead, I have two beads dangling centimeters away from each other.

The two beads appear to be different shades of the same color. I tell myself that the fused bead will be a compilation of the two shades and for a split second sometimes I think it flashes and I can see it, but I can't be sure. Maybe my mind is playing tricks on me or maybe my eyes are playing tricks on my mind. This new language is a tough one to learn.

The other day I realized that when I look up at the wall slightly above where the bead is supposed to fuse, I see the strings create a perfectly balanced X and the bead becoming sort of singular (although I still have yet to see the two strings going into that one bead...I can never seem to see that. Perhaps a bigger bead, although I did try ping-pong balls last year and that was too big!)

Why did the bead appear to fuse when I looked at the wall above it? The next day I tried to get the perfect X again by looking at the magic spot on the wall, but nothing happened. I blinked to try to get it and it happened again, and I realized in that split second that it wasn't the wall I was looking at, it was the air above the bead, towards the wall. My focus was on the air, not the wall! I was looking slightly above and ahead just past the middle of the X as it goes back out.

So then I wondered, why does the bead fuse when I look in the air above it? I have come to this conclusion: Maybe what I think is pointing my eyes at something is just not so. Seeing with both eyes at the same time is so foreign to me that perhaps it only felt like I was looking in the air above the bead, when in fact it was probably in that moment that I was looking at the bead with both eyes, aligned and seeing in-stereo.

I could be wrong about all this. Perhaps there is a scientific, measurable reason for this, that by looking slightly above the bead it compensates for some small misalignment I still have and I am really seeing the Brock String fuse out of my peripheral vision, I don't know. The string is so invaluable to me, as it tells me what I could never know, where my eyes are actually pointing.

In the end, this has taught me that I don't really know what using two eyes feels like. This is a great revelation to me. Perhaps the route to stereo vision will feel strange, like I am looking elsewhere, I think now that I know this, I will better be able to create a map towards it.

Wednesday, December 23, 2009

Tree Trimming in Vision Therapy


Today I worked with red green glasses to help me learn not to suppress. The exercise involved picking up tiny circles and putting them on a Christmas tree. The tree was green and the circles (or ornaments) were red. I did pretty well. My eyes are aligned from the surgery, but my brain is only beginning to learn how to use them together. I absolutely love vision therapy now. Not that I didn't love it before, but it was often frustrating due to the severity of my Strabismus. It was very difficult to do many of the exercises. Now, I see tremendous progress and I have only had about three sessions since my operation. There would be no way I could do this exercise prior to my surgery. Slowly over time I will get into fusion exercises. I can't wait!!!

Tuesday, December 22, 2009

Intermittent Esotropia

Cross Eyed Mayan Sun God Kinich Ahau.

Woke up at 4:30 this morning and took a spin class at 5:45. This is what my eyes look like when I am tired. My left one crosses in a bit, but I already knew this would be the case when I met with my surgeon Dr. Brian Campolattaro. He told me that I might need two surgeries because of my Intermittent Esotropia, however, I am pretty confident I can correct this in Vision Therapy. I have always been someone who needs a lot of sleep, so I just have to make sure I get it.

My surgeon told me that Vision Therapy is more successful on patients with either Esotropia or Exotropia. I will have to ask my Vision Therapist about this, but it sounds like it makes sense. When I asked Dr. Campolattaro why is it easier for Eso's and Exo's, he said it was because it is a more natural thing to converge and diverge your eyes, but trying to correct a vertical misalignment with therapy is more difficult because it is not a natural thing to try to bring one eye down and one eye up.

For some reason when my eyes are tired I think of Karen Black in one of my favorite movies, Burnt Offerings. She always had an intriguing thing going on with her eyes, so that is the way I am going to look at my temporary crossing, like it is interesting. I am just so happy that my eyes are actually on the same plane and almost the same size, that a little crossing doesn't bother me that much.

I just recently read that in Mayan civilizations they looked at crossed eyes as something beautiful. To achieve this they would dangle a small wax bead in front of their babies eyes to make them cross in.  To think, in that civilization I would have been a baby goddess!