Is This the End of the Road?

The two eye examinations I received from my surgeon and developmental optometrist yielded the same response, "You look like a million bucks!"   Both doctors concluded that my eyes were nearly perfectly aligned...I only had a tiny bit of vertical misalignment, only detectable by careful measurement, hardly detectable to the human eye. 

After close examination my surgeon, Dr. Cadera, told me I would not need a second surgery.  This was tremendous news!  The tiny bit of misalignment that was present should respond nicely to vision therapy.  He advised me to go back to vision therapy and continue work to regain full alignment and hopefully be able to achieve stereopsis (binocular vision).  Encouraged by his report, I looked forward to my appointment with my developmental optometrist.

I was greeted with a warm embrace by Dr. Kadet (aka "Dr. T") when I entered Hope Clinic for my progress evaluation. It had been many months since I had last seen him or been in for vision therapy.  As he looked into my eyes I could detect a bit of surprise in his face.  I don't think he expected my surgery to go as well as it had.  He took me back to the examination room and had me go through the typical eye screening exercises.  Because the vision in my right eye is so poor, I had difficulty doing what he asked me to do.  As Dr. Kadet moved the lens inside the phoropter vertically and horizontally, I was told to tell him when the two objects were perfectly aligned.  For a legally blind person, this is s difficult task.  My brain still wants so badly to repress the vision in my right eye.  It constantly turns off the vision in that eye so that I cannot see whatever it is I am supposed to see.  After several attempts trying to align various boxes and circles, he was able to calculate the alignment of my eyes. 

"Yep!" he exclaimed.  "He nailed it. Your eyes are almost perfectly aligned.  You only have a very small amount of vertical misalignment.  You know, he nailed it.  No, I really mean that...he nailed it!  I must admit that I was surprised he would even take you as a patient and am impressed with the result.  You look great!" 

"Well," he said, I don't know if there is that much more we can do for you know.  You are in a really good place." 

Puzzled, I exclaimed aloud, "Excuse me?  What do you mean by that?" 

"Well, Dr. Cadera did a fine job aligning your eyes.  I am not sure we can help you beyond that." 

Taken aback by his comment, I pressed him further.  I told him that Dr. Cadera encouraged me to seek vision therapy in order to continue to work on alignment and the possibility of fusion.  Dr. Cadera "got my eye in the ballpark" and Dr. Kadet could take it the rest of the way.  I asked him about continuing vision therapy so that I could work to get some 3D vision.

That's when Dr. Kadet said something that caused me to form a large lump in my throat which sank down my esophagus into the depths of my stomach.  He told me that because I had no central vision (in other words, my fovea does not work), I would never be able to achieve 3D vision, or stereopsis.  He said that central vision was required to have 3D vision. 

I must have looked completely shocked and dismayed.  I really could not believe what he just said.  Why would he lead me on all these months and give a false hope about the possibility of achieving 3D vision?  I honestly felt as if I had been bamboozled!  If that were the case, why didn't he tell me months ago that I would never be able to see 3D?  Why give me a false sense of hope all this time?

I did some computer research and found out that it is true.  Visual clarity and perfect alignment is necessary to achieve 3D vision.  I am including a good video from the American Optometry Association that explains this.  I may be able to achieve perfect alignment, but I will never be able to see clearly out of my right eye.  Months of vision therapy aimed at improving vision to my right eye led to this conclusion.  My right eye will remain legally blind for the rest of my life.  

So is this the end of the road for me?  Have I arrived at my final destination on my vision quest?  I guess I am not entirely sure.

If this is the end of the road, then I must admit that is a really great place to land!  For the first time in my life I can look another person directly in the eyes without hesitation.  I am no longer afraid of a camera lens or photographer.  I can look in the mirror and like the person who looks back at me.  For the first time in my life I feel a greater sense of confidence and self-esteem.  I am ready to take on the world!   If I have arrived at my final destination along my journey, I celebrate!  I have been given the chance to live a life free from discrimination and prejudice.  I can live to be all that I was created to be!

One Month After Surgery

Thank you for rallying behind me...for cheering me on...for supporting me through the dark hours of uncertainty and fear.  As Ursula K. LeGuin once said, "It is good to have an end to journey toward, but it is the journey that matters, in the end."
Happy trails to you, until we meet again!
~Michelle

24 Days Post Strabismus Surgery -- A Whole New World (Video Blog)

I have never thought of myself as an overly emotional person.  Maybe I have just become really good at suppressing my emotions, or perhaps it is a part of my genetic makeup and inherent disposition.  Most days I am pretty even keeled, being able to put my emotions in check and look at life rationally and objectively.  

It has been 24 days since my strabismus surgery and I find myself experiencing a whole new world of vision, being, and emotion.  Each time I now look in the mirror I have to ask myself, "is this the real Michelle I am seeing?"  It is startling to see my two blue eyes staring straight back at me.  The person I now see in the mirror is the one who should have been born -- the one who should have been living these 44 years --but as fate would have it, a different one emerged, one with a disfigurement so noticeable it was impossible to hide.  I hardly recognize myself now when I look in the mirror.  I am learning to embrace the reality of a whole new way of seeing and being.  To be honest, the reality of this new life hasn't quite hit me yet.

But something has struck a loud chord with me and given me the courage to proclaim to the world a message of hope.  My videos are posted on YouTube and by searching key words, folks are able to find my videos and blog on the Internet.  I have already had thousands of views and am developing many followers.  Recently I have heard from several people, who have suffered with the same debilitating deformity all their life,  tell me that they are joining me on my journey and are now seeking treatment for their strabismus.  I cannot tell you how much this means to me -- to know that my simple act of being transparent, honest and real about my condition and publishing my steps towards seeking treatment has already made a difference.  It encourages me to seek out others and share my journey of hope.

Warning:  The following video contains emotionally charged footage. I choose to put my pride aside and am compelled to post it in hopes that others may be encouraged by my message of hope.  If you or someone you know is living with strabismus, know that there is a whole new world out there -- follow me.

Day 8 Post Strabismus Eye Surgery -- What a Difference a Week Makes!

Today marks the one week point following my eye muscle surgery.  It was a great day for me, as I returned to work after taking off 4 days to recover from surgery.  Even though my eye is still red and maybe not perfectly aligned, it is incredible how much of a difference the surgery has already made on my life and outlook.

I am attaching my latest video blog.  What a difference a week makes!  I am feeling so much better - in body, mind and spirit!  I thank the Lord for his gracious hand of healing and for the skilful hand of my surgeon, Dr. Cadera. This is one decision I think I will never regret!

Day 4 Post-Op Strabismus Eye Muscle Surgery: Reflections along the Journey

I can fully understand how people may not know how to respond to someone who has just had eye muscle surgery.  Let's face it, you look like something right out of the movies!  I could be featured in Rocky VI, Zombie Mama Returns, or the Alien from Outer Space!  I guess that is why the doctor recommended that I take the whole week off of work...his words exactly, "you just need to get through this first week."  Translation:  you look like hell and you will for a while...sleep it off if you can and stay clear of spectators!

So why am I blogging and actually posting my unsightly videos for the world to see?  My husband and son asked me that question.  Why would I put that image of myself that out there?   "Michelle, you should take those off of there!"

If you are asking yourself that question then you really don't know what it is like to live with such a public disability.  You see, all my life I have felt unsightly.  Every face-to-face encounter that I have had with another person brings to mind my disfigurement.   When I look into the eyes of another person I can't help but think they are noticing the misalignment of my eyes.  Granted, it is often a fleeting thought that enters and exits my mind, but nonetheless, it is there day after day without ceasing. 

I realize that making these videos and blog entries public may cause folks to think differently about me.  That is a risk I feel I need to take.  What motivates me is the thought that there is about 3% of our population that lives with strabismus each day.  Each day these folks struggle with the same feelings of insecurity and low self-esteem.  You see, strabismus is more than a physical defect.  It is a psychologically debilitating condition.


The psychosocial effects of strabismus has also been well researched.  In addition to dealing with ridicule, teasing, and social isolation, folks living with strabismus are often victims of discrimination when applying for a job.  They are often introverted, suffer from poor interpersonal relations, and most avoid eye contact (Castleberry, 2005).   My disability makes it difficult for me to  form deep friendships and  relationships outside of my immediate family.  I have tons of acquaintances, but I have had very few close friends. I consider myself to be a very out-going, positive and friendly person, but let's face it, it is hard to maintain a deep and meaningful conversation with someone you cannot look at normally. 

As a teacher, I would ask questions to the class, look at the student I wanted to respond and ask them to answer the question.  I cannot tell you how many times they look around and say, "Who me?  Are you looking at me?"  I get it...one eye is pointing one direction and the other is off in a different direction.  Of course it is difficult to know which eye to follow.  Adults think the same thing...they just avoid saying it out loud. 

That is why I am subjecting myself to this level of vulnerability and public exposure.  If I can help just one other person find a path of treatment and healing from this disabling condition, then it all worthwhile.  If I can help just one person with normal eyesight be able to understand how strabismic people feel -- to get them to reach out and form deep and meaningful relationships with those who suffer from this condition then it was all worth it.  Let me ask you, you who are normal sighted, how many of you are best friends with a strabismic person?  How many of you socialize with those who are cross-eyed?  That's what I thought. 

Since I am being totally transparent, I might add something else.  Many strabismic folks are extremely hard workers.  They immerse themselves in their work because of two main reasons.  One, they contribute to the world in a positive way, which elevates their self-confidence and helps them feel valued.  Often times they can do this by hiding behind a computer or working in isolation.  By immersing themselves in their work they can avoid face to face encounters.  For those of you who know me, you will know that to be true of me.  I am very good at working -- too good for my own good.  You will also say that I appear, on the surface, as having a high level of self-confidence.  Now you know that the confidence I have comes mainly from my work and from my studies.  Deep down inside, like other strabismic folks, I am longing for deeper more meaningful relationships with others.  It is hard to find those who are willing to look beyond the disability.

Somehow I am hoping that this surgical procedure will take away the discomfort that others have when they look at me. I want to remove any obstacle that would inhibit my ability to communicate and interact in a "normal" way.

For those of you out there who are living with strabismus, know that I fully understand how you feel.  Let me go before you and help find a path toward healing and recovery.  In the end, I hope we both can say that it was worth it!

For those of you following my recovery, here is my latest video blog, four days after surgery:

Frankenstein Moments--Day One Following Eye Muscle Surgery

Video blog entry for May 25, 2011 -- One day following eye muscle surgery.

 

Is she Rocky or the Bride of Frankenstein?  You decide!  (I'm joking!  It will get better, I promise!)

Five Hours Post Surgery -- A Frightening Experience

When I arrived at Northwest Eye Surgeons I was taken to the clinic for a quick set of eye measurements. The had me look into a machine that had a red light that would shine into each eye several times. The nurse printed out a report and I was taken to the surgery center.

My husband, son and eldest daughter were with me today. It was great to have them present during this stretch of my journey. When I was called back for the surgery, I had to leave them behind in the waiting room.

I waited quite a while after getting some antibiotic drops put in my eye and my IV put in. The anesthesiologist brought me back into a room with a chair. She gave me some Versed to calm and relax me. Then she proceeded to inject my eye with medication to numb it. With the Versed, this was quite a tolerable process.

I then was brought to operating room, placed in a reclining chair and was attached to all of the usual monitoring gauges. Dr. Cadera entered and a number of nurses were present to assist with the surgery. A plastic drape was applied to my face, over my right eye. They placed a cone near my nose to create a space for me to breathe easily. Dr. Cadera carefully cut a slit in the plastic and placed my eye in some sort of clamp to keep it open. All of this was quite tolerable, as I was virtually numb in my eye and face.

I was fully conscious and able to converse with the doctor during the entire procedure. Although I could see instruments come into my view, they were not clear but appeared as if I were in a dream. I make out the scalpel, the sutchers, the scissors and the various hooks and needles. I could watch him cauterize my blood vessels and move instruments in and out of my field of view. I could feel the tugging on my eye as he applied the stitches and the pressure as he cut and poked. There was even one point in the surgery that I felt him poke into my eye with a sharp instrument. Apparently that part of my eye did not get as much of the anesthesia. It was uncomfortable, even a bit painful, but completely tolerable.

I enjoyed conversation with Dr. Cadera and his staff throughout the surgery. We engaged in small talk, discussions about my eye and speculation about why I suffered from this condition. The rest of the talk was focused on Dr. Cadera speaking with his staff as they assisted him with the surgery.

Dr. Cadera operated on two different muscles, one that controlled horizontal movement and one vertical. When he looked at the one that controlled my horizontal movement, he commented that somehow the muscle had been moved because it was not even close to where it should have been. I reminded him that I have never had eye surgery in the past and he was quite surprised. Being lodged in the birth canal for hours on end must have moved the position of my eye muscle.

The surgery itself must have lasted about 45 minutes. Dr. Cadera said he was pleased with the surgery, but cautioned me, explaining that it would take weeks for my eye to settle into position. He told me not to get too concerned when I remove my eye patch and notice that my eye is not in the right location. He said it would take about a week for things to settle down.

After surgery, I was walked to a recovery room where my IV was removed and I had a cup of coffee and a peanut butter cracker. I felt good.

Here is a photo of me just five hours post surgery. My eye is still numb with the anesthesia which may explain whey it is pointed in the wrong direction!

I video taped myself taking off the patch and opening my eye for the first time. I want to warn you...if you have a sensitive stomach, you may not want to see this.

Before Surgery......

I am three days away from surgery and thought I would post a before photo and also a video blog. Here is a still shot of me before surgery.

Here is my video blog. See the difference with prism glasses and without:


My surgery is set for 12:00 noon on Tuesday, May 24th. Thank you all for your prayers and support. Next time I blog, I am hoping for two eyes looking directly into the camera!

Forging Ahead into Uncharted Territory

I am now 10 days away from an event that is certain to completely change my life. I have decided to move ahead with eye muscle surgery. I have scheduled the surgery on May 24th at Northwest Eye Surgeons in Seattle, Washington. Dr. Werner Cadera will be performing the surgery -- he specializes in adults with Strabismus and does about 300 of this type of surgery each year.

When Dr. Cadera examined me, he found that my right eye is about 20-25 diopters misaligned. The prisms I have in my glasses only correct my misalignment by 9 diopters. What this means is that even with the strongest prism (about 16 diopters is the maximum one can have in eye glasses), my eyes will still be misaligned and there would be little hope I would ever be able to use both of my eyes together. With this level of misalignment, I will not be able to ever get the separate images I see out of each eye to fuse together to create one image. Therefore, without surgery, I would see double until my brain decided to repress the vision in my right eye and return to using my left eye only. In fact, there is a chance that my brain would never turn off the vision in my right eye and I would see double for the rest of my life.

Dr. Cadera explained that I will be awake during the surgery. I will be given a sedative to relax me and they will numb my eye with numbing drops. He will then make an incision in the thin white lining that covers the eye (called the sclera), peeling it back to expose the muscles that lie directly beneath. He will then surgically remove and reattach the muscles, shortening and lengthening the ones that are improperly placed. The sclera is then reattached and the surgery is complete. My eye will be red and irritated for about a week -- taking a full month to recover and settle into place. The thought of being awake, potentially being able to see a scalpel and sutchers come in and out of my sight is quite unnerving. I need to muster all of the courage I have to venture into this frightening reality.

But therein lies the hope of a much brighter existence for me. Dr. Cadera told me that with surgery, there is an 80% he can surgically move two of the six muscles in my right eye and achieve 100% alignment with my left eye. If my eyes were not 100% aligned after surgery, he said I could wait 3 months and have a second "touch-up" procedure. After the second surgery he could almost guarantee that I would have 100% alignment with my left eye. With that being said, how could I not decide that surgery would be the best option for me?

So I am moving ahead. Forging into, what is for me, uncharted, scary, dark waters. As I set sail into the unknown, I am propelled forward by a glimmer of a beautiful light in the distance. The light of hope. Once my eyes are aligned I should be able to continue with my vision therapy and learn to use my eyes together. Once I learn to use them together, there is a good chance I should be able to fuse the vision in both of my eyes together. If this happens, I should be able to obtain, for the first time in my life, some degree of binocular 3D vision.

What still makes these waters so dark and scary to me is the thought that I will wake up from surgery with worse vision than I have now. Will the dark black holes I see in my right eye fuse with the nearly perfect vision I have in my left creating a darkened view of the world? Or will my brain be plastic enough to take the best vision out of both eyes and create a picture that is much improved compared to the vision I have now? My both of my eye doctors tend to believe the second scenario is true. They both believe that I will have better vision than I do now.

But I have set my course and am sailing toward the light that glimmers on the horizon, trusting fully in my God, my Creator, and my Source for all real hope. He provides me with the courage, wisdom and strength to continue my journey towards a brighter future.

Double Vision ~ Double Prism

The months of vision therapy have gone quickly. I started out working on strengthening my weak, amblyopic eye ~ engaging in a variety of daily exercises to awaken my suppressed vision and attempt to strengthen my acuity. Although I could progress through various levels on my amblyopia computer game, eventually I came to a point where I could no longer move forward. After rechecking my vision, Dr. T agreed that my right eye does not seem to be responding well to the monocular vision therapy. As I mentioned before in my blog, my periphial vision is alive and well, but there is something seriously wrong with the fovia in my right eye and I am unable to focus on anything clearly. This accounts for the "black holes" I see in my vision when I look out of my right eye.

With the monocular vision therapy came tracking exercises. I worked to track objects with my weak eye - left and right - left and right in zigzag patterns. I could feel the muscles in my eye working. Learning to sense the movements of my eye is an important step in therapy. When doing therapy at the clinic, my vision therapist, Sammy, always asks me how my eyes feel. I am learning how to control the muscles ~ to a certain degree.

After realizing that the acuity in my right eye has not been sharpening as much as hoped, Dr. T decided that we would incorporate some binocular vision training ~ maximizing on the periphial vision I do have in that eye. Sammy introduced me to the Brock string. Using a few blocks on a string placed at varying distances from the end of the string, a person holds the string up to their nose and focuses on a block about a foot from their face. Then they focus on the second block about two feet away. Then back to the first block again. An interesting thing happens ~ the string begins to double and appears to form a V that converges at the block. Then it diverges and looks like it forms an X ~ crossing right at the block that is the focus. Doing the Brock string exercises helped me realize that I am able to see binocularly.

This was quite an amazing realization. Now, I could not make the string double except for at the closest distance from my nose, but I was seeing out of two eyes. When I would use the Brock string with red and green glasses, I would see the two strings in different colors. This way I could tell which string was being viewed from my left eye and which one was looking out of the right. In contrast to the perfect vision I have in my left eye, the objects I can see out of my right eye appear like a ghostly image in comparison (see picture at beginning of blog).

Upon realizing that I was able to "turn both eyes on" at the same time, I began to learn how to do this using different objects. I learned how to "look soft" at an object ~ almost like looking through the object ~ to activate the vision in my weak eye. However since my eyes are not fully aligned, each time I am able to see out of right eye, I see double. The object that I see out of that eye is down and to the right of where it is in reality. In the picture at the beginning of this blog, the double vision I experience is called "horizontal and vertical diplopia." That is because my right eye turns in and is slightly pointed up in relation to my left eye. When I see double, I see a mirror image of what I am actually seeing. The image is down and to the left - it is opposite of where my eye is actually pointing.

One way my doctor has tried to correct the diplopia (double vision) has been to prescribe me double the amount of prism in my eyeglass lenses. He started out with a minimal amount of prism to see how my eyes respond. I now have double that amount ~ a total of 9 or 4.5 in each eye. It has been two weeks since I got my new prism lenses and my eyes are still adjusting to them. I see just fine at close up distances, but have blurred vision at long distances. Because my eyes are better aligned vertically, my double vision is now mainly horizontal (see above - like the picture of the man) instead of both horizontal and vertical. I also find it more difficult to see double "on command." With my old prism glasses I could tell my brain to turn on the vision in my right eye and I would immediately see double. For some reason, perhaps my brain needs more training, it is harder for me to see double anymore. The double image is fainter than it used to be.

My vision therapist and I have been engaging in a discussion about my progress. I seem to be at a standstill with my therapy because I am unable to get the two images I see out of each eye to converge (align). Without the ability to do this, I cannot do many of the binocular training exercises. We hope that the lenses will help, but ultimately, I really need my two eyes to point at the same place at the same time.

That is what has led me to my next step in my journey. Tomorrow I am going to see a doctor of opthamology ~ an eye surgeon ~ who specializes adults with strabismus. I am going to see if there is any hope of surgically aligning my eyes. If my eyes could be perfectly aligned, I feel quite confident that I could regain 3D vision (also called steropsis). I could get both of my eyes to work together!

To be quite honest, I am scared out of my mind. The notion of eye surgery frightens me to no end. I worry about the risks. I worry about the outcomes. I worry about what could go wrong. I certainly do not want to live with regrets...but if I don't pursue this option, I may never know if it would have actually worked. I must at least inquire.

So here I go. I'm holding my breath and taking another leap of faith!

Thursday, August 26, 2010

Prisms, Progress and Glimpses of Hope

I woke up in the morning, stumbled out of bed and made my way to the bathroom. My husband came into the room and called my name to get my attention. I glanced in his direction and our eyes met each others'.

"Whoa, Michelle...what's up with your eye?" he stated, somewhat bewildered.

"What do you mean? What's wrong?" I said, desperately seeking clarification.

"Uhhhh..your eye is really screwed up right now."

My heart sank into the floor. No! What did he mean by this? I hustled to the mirror and one glance confirmed his observation. My right eye had completely turned toward my nose -- not just a little, but a lot -- a whole lot. It was pointed right at my nose. I was horrified!

Dr. T's words rang through my mind. "Any change is a good sign." How could this be good? My eye was turning in the wrong direction! I couldn't help but wonder if what my decision to engage in vision therapy was a good one. What if I was making things worse and not better?

Quickly I put on my prism eye glasses and allowed my eyes to adjust to the lenses. I had been wearing the glasses for about two weeks; small changes were now detectable in my eyesight. After a few minutes, my right eye straightened out, re-aligning as I gazed through the optics. Ahhh...that's better, I thought. It was still turned in, but not nearly as much. I tried not to let this set back get to me and proceeded to get on with my day.

It has been six weeks now since I first started my vision therapy. I have been wearing my prism glasses for several weeks. I recall the first day that Dr. T placed them on my eyes. I felt a little dizzy and had to be careful not to move my head too quickly. I was cautioned by my doctor and one of my therapists to break them in gradually, wearing them in small doses to start. Of course, that would not be in my nature to do such a thing! I decided to wear them out of the doctor's office and across the street to the mall to try my hand at shopping!

I was doing quite well until I left the store. Unable to correctly judge the distance from the sidewalk to the road, my ankle gave way as I fell off the curb. I twisted my ankle and bruised my pride. I felt rather humiliated by the experience. I can be quite stubborn at times -- I guess I really should have listened to my doctor!

My eyes have adjusted well to the prism lenses. With six weeks of therapy and eye training, I can feel my eye muscles strengthening, as if they have gone through some muscular workouts. I am now quite aware of my right eye moving in it's socket. I feel the muscles tense as they move about in my head. It's a good feeling. All these years have gone by and my right eye has just sat there, lazily reclining in place. Now it is being forced to work! Like atrophied muscles after a cast has been removed, I am using physical eye therapy to regain lost strength.

Yesterday I had a six week check-up with my developmental optometrist. As I sat in the chair, I gazed at the wall, trying hard to detect the horizontal and vertical lines that formed the infamous "big E." At 20/200, I could make out the sideways E fairly well, at 20/100 it was more difficult, the letters below would crowd over the top of the large vowel, skewing and distorting the shape of the letter. Obviously my acuity had not improved too much.

Then he used the prisms on each side of the photoropter to intentionally separate the images I was seeing out of each eye so that I could tell him, as he manipulated the prisms, when one shape lined up with the other shape, both vertically and horizontally. He used this technique to measure the amount of turn in my eye.

He was fully prepared to make adjustments in the amount of prism in my eyeglasses. When I was first prescribed the prism lenses, he used the smallest amount of prism that would make a difference. Too much prism is apparently not good. He gave me about 25% of what my eye measured. Thinking he may need to bump that up, he was surprised to see that my eye had adjusted so well to the prism lenses, I would not need any changes to the amount of prism in my glasses. This was fantastic news. Even though I may not be seeing clearly out of my fovea, my pheriphial vision is responding well to the prism lenses. The prism bends the light as it comes into my eye and my eye moves to be able to focus on the images. This is how the prism works to re-align my eye. If I was not seeing at all out of the eye, my eyes would not move.

He also checked to see how much far I was able to see with my bad eye. With my first screening, I was only able to see binocularly for a distance of 3 inches from my face. Now I was able to see binocularly for a good 12-14 inches. This was significant. The therapy and prism lenses have been making a difference.

I was encouraged as I left his office -- encouraged that I really was on the right track. Even though I have to wear my glasses to help correct my lazy eye, I am thankful that when I look at my reflection in the mirror, or my face in a photograph, I do not see an eye turned in and up to the degree that it had just six weeks ago. Now that's something to celebrate!

Friday, July 23, 2010

Emotional Turbulence and Visual Static

I am two weeks into my vision therapy and beginning to experience some emotional duress related to my treatment. Not only have I suppressed vision in my right eye, but I have suppressed emotions relating to my blindness. Like earthworms beneath the ground during a heavy rainstorm, my emotions are finding a way to surface and make an unsightly appearance.

What seems to amplify my emotions is knowledge. You see, I know what it is like to have good eyesight. My good eye has always compensated for my lack of vision in my bad eye; therefore I have had excellent vision in that eye all my life. In my younger years my acuity in my good eye was measured to be better than normal. Doctors said I had 20/15 vision in that eye. What normal folks could see at 15 feet, I could stand back at 20 feet to see the same thing. Only in the past 5 years or so have I developed a bit of astigmatism. Other than the normal wear and tear due to senescence, I see beautifully out of my left eye.


As I mentioned earlier in my blog, my brain suppresses the vision in my right eye because my alignment and visual acuity is so drastically off compared to my left eye. With my right eye, I cannot even see the big "E" on the eye chart. Even with corrective lenses I cannot see the big "E." I can see that there is black and white in front of me -- some lines are vertical and some horizontal -- but the images shift around, almost like my brain is turning on and off my vision while my eye moves around the page, desperately trying to make sense of the what I am looking at. This flickering and movement causes, what I refer to as "blind spots." These blind spots cover the crisp colors and vivid lines I see when I look out of my right eye -- the shifting causes the blind spots to move around my visual field, disallowing me to see anything exactly. I see vivid colors and lines, but only one glimpse at a time. There is no continuity in my vision -- I cannot hold the objects stable. These blind spots consume my clarity.

If somehow I could find a way to remove these blind spots, I am quite certain I would have normal vision in my eye. I truly believe the vision in my right eye is comparable to the vision I have out of my left eye, but with these shifting blind spots layered on top. My newest theory is that these blind spots are caused from my brain wanting so desperately to turn off the vision in that eye. When I force myself to see out of that eye, my brain says, "Nope, I don't think so..." and then proceeds to darken the image. My eye wants to see, so it moves my fovea around -- trying to see "around" the blind spots -- but it is unable to succeed. The darkness consumes my sight.

Lately I have been thinking that maybe my fovea not only refuses to work, but possibly there is something inherently wrong with it -- a malfunction of a sort. Could this have happened at the time of my birth? Could the pressure of being lodged in the birth canal damaged my eye muscles, leading to misalignment of my eye and ultimately causing my brain to become confused by the misaligned visual images. My brain developed a sophisticated way of turning off the vision by creating these blind spots - a darkening of my vision so that I would not use that eye. Perhaps my vision was perfect when I was in my mother's womb, but only upon birth did this mishap occur and my brain found a way for me to see around my deformity. If I could somehow get my eyes to become perfectly aligned, maybe ~ just maybe the shrouds of darkness would lift from my vision and my good vision would be restored. What a day that would be! I hate to even allow myself to think that way; it would be all too simple! Just surgically correct the misalignment and see what happens!

The other day I was thinking about my vision and was trying hard to come up with some sort of metaphor so that others could better understand. I began to think of my eyes as being a radio. When you try to "dial in" to a certain radio station and are "off" the correct bandwidth by a few tenths, you hear music and static. When you are completely "tuned in" to the correct frequency, the music is clear; the static disappears. My blind spots are like visual static. If I can just get my eye dialed in correctly, maybe my vision will once again be clear. That would be a dream come true!

I have often thought of that day, the day I have surgery on my eye muscles. I imagine that the doctor would remove the tape and gauze that cover my eye and wait for me to open it for the first time. I imagine it would take me a long time to open my eye because I am afraid of the surgical outcome. So I sit there, opening my right eye a small crack while keeping my left eye closed just to see if my vision still exists. I imagine my response as I break out in tears, looking at myself for the first time in the mirror to reveal two eyes that look straight at my reflected image. Would my eyes work together? How would I see the world differently? I can only imagine.

Dr. T says we need to wait to see how I respond to visual training prior to making any decision to permanently alter my eye's alignment. My new prism glasses should help correct my misalignment so that I can start to learn to use my two eyes together. If I have the ability to see binocularly with the glasses and I respond well to the visual training, then surgery may make a lot of sense. If I do not, it would be too risky, seeing as it may worsen my vision.

Each time I engage in visual training I am reminded of the severity of my condition. My right eye is seriously screwed up! I want to have hope, but hope alone will not suffice. I am in need of a miracle. I cannot proceed in this long journey without authentic faith and an unswerving belief that God desires to heal me through this process. I must remember something that I read on the wall of an African missionary health clinic ~ "Man treats...but God heals." Although it is extremely difficult for me to understand why God would want me to live the rest of my life as a strabismic amblyope, I may have to embrace that reality. Every fiber and cell in my being desires to contend for a miracle and I will certainly fight for that outcome. One day I truly hope I can say, "Amazing grace, how sweet the sound that saved a wretch like me. I once was lost but now am found, was blind, but now I see!"

Thursday, July 15, 2010

Let the Games Begin!

It didn't take long for me to make a decision. I kept thinking about one thing. If I didn't try, I would never know. The worst thing that can happen after my six month trial is nothing. Really, what did I have to lose but time and money? Those two resources are not nearly as valuable as regaining vision in my amblyopic eye. The path ahead of me was clear. I simply needed to embrace my decision and go for it!

I took the plunge and made the six month commitment with my developmental optomitrist, Dr. K. My first vision therapy appointment was fairly uneventful. I spent most of the 45 minutes completing an assessment with a computer program called Interactive Metronome. A sensor was strapped on to one of my hands and the program was started. I had to make circular motions with my arms and clap my hands together each time I heard the cowbell in the headphones I wore. A series of dots on the computer screen would tell me if I was hitting precisely at the moment that the cowbell was sounded. It measured each strike down to a tenth of a second!

The sequence of interactive assessments progressed from the right hand to the left, from the right foot to the left foot, the right hand and left foot alternating, and then the left hand and right foot alternating. Then I had to stand in front of the foot pad and do heel taps. You got it, first the right, then the left, then alternating right and left. The testing concluded by having me go back to hand circles; but this time buzzers would tell me if I was striking too early or too late. If I was right I would hear a pleasant sound.

I discovered a couple of things about my rhythm and coordination -- I definitely had some real challenges to overcome! I swore up and down that I was striking precisely when I heard the cowbell, but the majority of the time I was too early by several milliseconds. I had a hard time understanding how this would help my vision; I guess I had to just "go with it." Certainly I would ask my doctor about the program and better understand how it works to train the brain to process sensory information.

After the Interactive Metronome session, the vision therapist introduced me to my first homework. She handed me a DVD case and took me to a computer where the program was already loaded. The program was called Perceptual Visual Tracking Program. Although there are several interactive activities on the DVD, it begins with several moving shapes across the screen. The vision therapist told me that we would begin by strengthening both eyes independently prior to doing any therapy requiring the use of my two eyes working together. She instructed me to start the program by wearing a patch over my bad eye and completing one level using my good eye. Then I could complete the rest of the session, for a total of 15 minutes, using my bad eye.

It is kind of like a moving target or arcade game. The program shows me a shape, picture, or letter and the object is for me to watch different shapes, pictures, or letters fly across the screen from left to right, pressing the space bar each time I find a matching one. With my good eye, this seems WAY TOO EASY. Almost laughable. However, when I patched my good eye and tried to complete a level with my bad eye, I couldn't believe how poorly I could see out of that eye. Supposedly I am to position my body 16 inches from the computer screen. In order for me to see the objects, I have to be about 5 inches away.

I have been using the computer program for a few days now and have been making steady progress. I must admit, I have had to repeat many levels though, failing to pass with no more than 30% incorrect responses. My therapist told me that I would receive a new program on Monday, one that would work to help strengthen my amblyopic eye.

The opening ceremonies have past and the games have now begun. I can only hope that one day I will be standing on that winner's podium proudly displaying the reward for all the hard work and training. My reward may not be a medallion of gold, silver, or bronze. Instead, it will be a beautiful blue eye that works in synchrony with its mate. To me, no greater prize could be won.

Friday, July 9, 2010

The good, the bad, and the ugly!

Yesterday I met Dr. T for a complete visual screening. My appointment took 4 hours and was quite extensive. He began by testing my peripheral vision then proceeded to check my visual acuity. Most of the time was spent measuring my eye to see the degree in which my right eye is "off" compared to my left. He used prisms to adjust the horizontal and vertical alignment of my right eye and measured to see how far "off" my actual vision was compared to where it should be in order to be in proper alignment with the left eye. He finished up the testing by dilating my pupils to check the overall health of my eyes.
http://www.lonestarvision.com/images/eye_anatomy.jpg

A lot of what occurred during the four hours was purely educational. Dr. T took time to explain each and every step of the process to me and help me understand why my brain has shut off the vision out of my right eye. Let me give you the good, the bad, and the ugly of his assessment.

First the good. Number one--even though I do not use my right eye to "see," my brain does use the eye to see objects in my peripheral field of vision. I noticed this was the case today as I drove to the appointment. As I was driving and focusing my eyes straight ahead, I could see objects entering and exiting the right side mirror. Curious about the awareness of this knowledge, I wondered if my left eye was seeing the right mirror of if it really was my right eye. I closed my right eye and looked out of my left. To my amazement, I realized that there was no way my left eye could see the right driver's side mirror; my nose was blocking the view! When I closed my left eye, ever so briefly, I noticed that I could still see the right side mirror in my peripheral vision. This was the first time in my life I was aware of the fact that I had usable peripheral vision in my right eye. The tests I performed in Dr. T's office confirmed this fact. I had normal peripheral vision in both eyes.


More good. The fact that I had not had eye surgery before has increased my chances of having a successful eye therapy by 50%. That's huge! I may need eye surgery later on; but for now, my eye muscles are right where God placed them and they should respond nicely to therapy.


What's really promising is that my eyes do work together some of the time. The doctor found out that I can "turn on" both eyes when I look at objects about 3-4 inches from my face. He was able to tell this because when I see objects this close, I immediately see double. This demonstrates that I do have SOME binocular vision--even if it is an ever so small amount. Until my eyes are straightened and I can focus on one object with both eyes, each time I use both eyes, double-vision will occur.


The other good news is that I was fairly consistent in my ability to "line up" objects while using the prisms. Dr. T had me sit behind a device called a phoropter and he adjusted the lenses to achieve visual acuity. He then used various prisms in my right eye so that I could tell him whether the image I saw out of that eye was lower or higher (for the horizontal position), or up or down (for the vertical position) from the object I saw with my left eye. Because he was able to get fairly consistent results, he would be able to use prism lenses to help correct the misalignment in my right eye.



So what is the bad news? The bad news is that my right eye hasn't been used for a VERY long time. It may be hard to awaken it and get my brain to decide to use the visual input from that eye when processing visual information. There is a chance my brain will decide that it just will not do that. If you look at the diagram at the top of this page, you will notice a very small dot behind lens of the eye. It is called the fovea -- it is what our eye uses to help us focus and see objects. Basically, the fovea in my right eye does not work. My brain has shut it off. My brain does use the other parts of my eye to see peripherally but refuses to use the part for focusing because it cannot match up the image from my right eye and left.

I saw how stubborn my brain was during the assessment. When I was aligning the objects using the prisms, as soon as the object would get in close alignment with the object in my left eye, I would lose sight of it in my right. My brain would simply shut down the image in the right. It may be that my brain will be resistant and even defiant when it comes to working with me. Let's pray that is not the case and that my brain will welcome this new input and incorporate it into my vision.

The other bad news is that I will have to wear prism glasses 24-7 during my training. I have always hated to wear glasses because I am significantly near-sighted in my right eye, so the lens looks like a coke bottle and the magnification needed to help my vision also seems to amplify my strabismus (or cross-eyed condition). Cosmetically glasses worsen my appearance and bring more attention to my strabismus, so I really fight wearing them. The doctor assured me that the prism glasses would help my vertical alignment and the vision therapy would help my horizontal alignment, so the lenses should not amplify my strabismus. They should help! I was also concerned that wearing prisms would look really funky. You know, I could use my glasses to make rainbows on the walls or kill ants outside! I instantly had this view of prism glasses being like the prisms we used in science class! He told me that they will look like regular lenses; the only difference is that I will need a frame that goes all the way around the lens because certain sides of the lens will be larger than the other. This should not be detectable to someone looking at me though.

Unfortunately, my insurance will not cover the cost of the visual therapy. Because Dr. T is not a perferred provider with any insurances, I will probably have to be responsible for about 60-70% of the costs. This will cost us considerably, but to someone who has been blind in one eye from birth, the possible benefits WAY out weigh the cost.

Now for the ugly. The ugliest news he shared with me is two-fold. First, the training will be long, hard, and require every bit of concentration and dedication on my part. He did not even want to consider beginning this training unless I was entirely motivated and would pledge to do my exercises routinely. The exercises will be done at home on my computer, for the most part. He uses an online program that he can monitor my progress and make adjustments to my training. I will also have to come in for appointments twice a week to begin and when school starts, it would drop to once a week.

The other ugly news is that there is a chance that we can invest all the time, effort, money, and energy into the visual therapy and my brain and eye will not respond to it. That is why he offered a six month trial period. If I am willing to give this a go, we will do as much therapy in six months and then re-evaluate to see if I have made enough progress to proceed.

With that said, I have a big decision to make. Do I proceed with the six month trial or, after taking all the risks and investments into account, should I call it quits and live with my blindness for the rest of my life (after all, I have lived this way for 43 years already)?

So if you were me, what would you do?

Wednesday, July 7, 2010

A journey of a thousand miles begins with just one step.

They say a journey of a thousand miles begins with just one step. Today I took my first step in what may be a very long journey ahead. As with any steps taken in an unknown direction, I have many fears and trepidations; but these emotions are squelched by the hope and anticipation that now wells, even grows within me.

I'd like to introduce you to a man I met today. In order to protect his identity, I will refer to him as Dr. T. An Internet search led me to a clinic that specialized in eye training and therapy. My complimentary free screening appointment was late in the day and scheduled to last 30 minutes. As I sat in the waiting room, I saw a mom waiting for her son to finish some visual training with a therapist. I overheard murmurings through closed doors as Dr. T. was discussing treatment options with an adolescent girl who was having reading problems.

Dr. T. emerged from behind closed doors, finished his conversation with the family seeking treatment, and approached the front desk to check in on his next appointment. He immediately recognized me from the email correspondence we had briefly engaged in last week. He greeted me warmly with a firm handshake, placing his left hand on top of our embrace in a friendly, welcoming manner. He said he had a gift for me; the fulfillment of a promise he had made me online. He went into an office and emerged with a new hardbound copy of a book written by Dr. Susan Barry entitled, "Fixing my Gaze--A Scientist's Journey into Seeing in Three Dimensions." He told me that he remembered me because of the description I left on the Optometrist's Network sounded identical to the story Susan Barry describes in her book. He was looking forward to our meeting.

One of the problems with only having one seeing eye is that I do not have binocular vision. Because my eyes do not point in the same direction and are unable to focus on the same object at the same time, my brain becomes confused and in order to help me make sense of the visual world around me, it shuts off the vision in my right eye so that it can function--basically a survival of the fittest mentality! That is what makes me legally blind in my right eye--the information to my brain is muddled and confused, so are the images I see when I try to see out of that eye. I have what is referred to as monocular vision. Being well acquainted with Susan Barry's condition and experience, Dr. T. gave me her book so I would not feel alone in the long journey ahead. He knows I will need all the support, understanding, and hope I can muster to traverse the path ahead.

We talked for over a hour and a half. Dr. T. was not only familiar with my condition, but he genuinely sympathized with my story. It was almost as if he had was an amblyope himself, but of course he wasn't. He offered me hope that my condition could be treated; it may not work, but unless I tried, I would never know. He was most concerned that I would have enough motivation and drive to endure the long, grueling journey toward obtaining binocular vision. It may take years--training for 30-45 minutes each day, five days per week. Would I have the gumption, stamina, and dedication to the training? I had to do some real soul searching.

Twelve years ago I pursued treatment for my eye at Pacific University in Forest Grove, Oregon. After a series of extensive tests and evaluations the doctors told me that I could undergo treatment. They described a regime similar to Dr. T.; however, they told me that there was a strong possibility that if it did not work correctly, I could end seeing double for the rest of my life. At that time I was unwilling to take this risk. Twelve years later, here I am entertaining this notion again, but this time my motivation is much higher. This time I am willing to try.

I mentioned my fear to the doctor and he said that he did not believe I would run the risk of double-vision; instead, my greatest risk would be that the treatment would not work--that we would invest all of the energy and time into the process only to find the process fail. To me, this was no risk at all. To me, there was no reason why I shouldn't proceed. I was ready, willing, and able. I told the doctor of my desire to begin treatment immediately; when do we get started?

Even though the doctor is scheduled to be on vacation, he cleared his calendar for Friday morning in order to conduct a complete evaluation on my eye. He understands why I want to get started right away. I have endured forty-three years of this condition; it is definitely time for a change!

Tuesday, July 6, 2010

Is there still hope for me?

I am about to embark on a journey of hope. Will you consider joining me along this journey? From birth I was diagnosed with a condition called amblyopia. Since I was young I was told that there is “nothing they can do to help me.” Throughout the years I have sought new treatments and hoped for a different prognosis. Tomorrow I take my first step in my journey towards recovery. Maybe this time things will be different this time? I can only hope.

July 6, 2010

I was born at 5:55 am on March 5, 1967, the third daughter out of four children born to Nick and Maggie Sheehan.

My parents told me that I should have been born on March 4th. Unlike her two previous deliveries, my mom labored with me for over 24 hours. Halfway through the labor, my parents both knew something was wrong. Because of the intensity and frequency of contractions, I should have come much sooner. Something was wrong and nothing was being done to change the outcome and circumstances surrounding my delivery. They were both extremely frustrated and gravely concerned.

Unfortunately, my mother’s regular doctor was gone on vacation and another doctor who was on-call was serving at St. Francis’s Hospital in Shakopee, Minnesota that day. After discussing the problem with Dr. Nelson, the decision was made to let my mom continue to labor and “just see how it goes.” My parents pleaded with the doctor to break her bag of waters; he vehemently refused. As the hours crept by one painfully after the other with no change, my dad became furious--my mom became increasingly weakened by the pain of being in transition for hours on end.

It was 1967. A time when rupturing the amniotic sack was a relatively new procedure, certainly not commonly practiced. Dr. Nelson was not comfortable with this idea and told my father that he did not want to proceed. My dad is a strong, outspoken man. When he feels strongly about something, the urgency is immediately detected in his body language and his voice. Seeing the pain my mother was in and watching her strength diminish, he told the doctor, “If you do not break her bag of waters right now, I am going to fire you!” With that said, the doctor agreed to the procedure, grabbed the surgical tool and made a small incision in my mother’s bag of waters. He turned around to place the tool back on the surgical table, but before he could turn around to face my mother’s womb, it was too late. With one push from my mother, I was born into this world and free of the walls that were inhibiting my arrival. The doctor turned around in time to see me -- all 6 pounds and 5 ounces of me -- lying on the table.

My parents said I was beautiful. The only blonde haired, blue eyed baby in my family, I was also noticeably different in another way. The right side of my head was completely crushed in and misshaped. When I opened my eyes, it was clear that the right eye was not looking straight ahead, but was turned outward and upward. Doctors later speculated that it was the pressure of being in the birth canal too long that caused my head to be flattened – they speculated that the pressure also damaged the optic nerve on that side of my head. From birth, I was unable to use my right eye in the same way I could use my left. The misalignment of eye and the damage of my optic nerve would change my life in so many ways.

At the age of three I underwent several years of eye patching to help regain use of my eye. This was an attempt to strengthen the eye muscles so that I would be able to use the eye and hopefully develop binocular vision. The doctors entertained the idea of surgery to help better align the eye, but came to the conclusion that surgery would not be in my best interest. The patching helped the alignment of my eye to some degree. Most people “say” they do not notice a difference, but I know the truth. I can tell that people are uncomfortable looking straight at me; they cannot hold their gaze much longer than a few seconds before turning away. It’s understandable. I know that when I look into the eyes of a cross-eyed person, I also wonder how to look at them—do you look at their dominant eye, do you try to look at both eyes—should you just look at their mouth? What is the socially-acceptable way to look at a cross-eyed person? I understand how people feel about this, so usually I break my gaze with them a few moments after gaining eye contact so that they don’t have to come to a place of wondering and worrying about how to look at me. I will break my gaze and look away, looking back occasionally so that they know I am engaged in our conversation. It is yet another way I have learned to cope with my disability.

It is hard to describe the vision in my right eye. I see crisp colors and outlines of objects. I see everything that exists in a normal visual sense, except I cannot see small details. Somehow my dominant eye tries so hard to compensate for my lazy eye that the blackness that I see when my vision is blocked is projected onto the images I see out of my lazy eye. I see holes in my vision – darkness and holes.

Back in the seventies doctors did not have eye drops to use to blind or blur the vision of the dominant eye so that the lazy eye would become stronger – so I cheated. I cheated a lot. Imagine sending a young child to school with a patch over their seeing eye and asking them to keep it on. Right! Imagine asking the child to read when nothing but black and white appears on the page…when no hint of letters emerges…when all she can see is the outline of vague black and white shapes…then imagine how she would feel. Of course she would want to cheat. She would want to please her parents by learning all she is supposed to learn in school. She would want to be able to answer the questions that the teacher asked in class. Reading with her seeing eye is hard enough in itself – with an eye patch, it is impossible. Then imagine the teacher placing her in the low reading group, not because of her ability, but because of her disability. Does that help you understand why I cheated so much? I just wanted to fit in – to be normal – to see!

I knew I was not supposed to cheat. I knew it was the one shot I had to regain use of my lazy eye, but I could not resist the temptation. All I needed to do was create a small hole near on the inside of my eye, nearest my nose, then I could see enough to get by. So I did.

I remember when I was in the second grade the entire school was brought to the cafeteria to watch a movie. The excitement in the air was intense. I was so sad that I would not be able to see the movie. Even sitting a few yards away from the giant movie screen, I could not make out what was going on.

Oddly enough, the show that was playing was Pollyanna. In the movie, a young orphan named Pollyanna learned to cope by playing a game she learned from her father. She called it the “Glad Game.” She would think about the optimistic side of things, even when things looked dismal. Her optimism was put to the test when she was hit by a car when crossing the street. The doctors said she may never walk again; she proved them wrong by using her optimism to overcome her disability.

I never had a chance that day to see the entire movie. I would create a small opening in my patch for a few minutes at a time to catch a glimpse of what the movie was all about, but I never understood it really. I could have played Pollyanna’s Glad Game and thought about the fact that I could see out of one of my eyes. Why, some people are blind in both! But that day, I only understood one thing…I was blind and could not see. This game that the doctors were playing with me was not something I was glad about. I was frustrated by the eye patching and felt is was unusually cruel of the doctors to make me endure such torture. Plus, kids made fun of me and called me names when I wore the patch – I was the “one-eyed girl” or the “funny looking girl” or the “girl with the patch.” I bumped into walls and furniture-having to use my hands to feel my way around. My dad tried hard to make me feel better. Sometimes he would draw an eye on top of my patch so I appeared to have two eyes. Painfully enough, the fake eye did not relieve me from my inner anguish.

After a while, the doctors gave up. I was not cooperating and my “window of opportunity” was closing fast. From that point on, the doctors were more concerned with protecting my “good eye” instead of finding a way to help my lazy one.

The question I now seek is this; does my blind eye have to be a life-long handicap? Is there a chance I can now regain sight in an otherwise normal eye? I’ve done the research and treatments now exist. Maybe there is a chance that I too can say, “I was blind, but now I see.”

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About Me

Michelle Fox

Oftentimes we ask ourselves "why?" What is the purpose in going through hardship, tragedy, sickness, and grief? The answer to that question can often be found in our response to these challenges. We invite you to walk with us along this road we now suddenly find ourselves on for we refuse to walk this road alone. We need you, our friends and family, to support us on the way. Michelle and Steve have been happily married for over 24 years. They have three wonderful grown children who continually bless their lives and give them much love and joy.

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