I was blind, but can I now see?: 2011

Wednesday, July 13, 2011

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

Saturday, June 18, 2011

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.

Tuesday, May 31, 2011

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!

Friday, May 27, 2011

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:

Wednesday, May 25, 2011

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.

Saturday, May 21, 2011

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!

Saturday, May 14, 2011

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.

Sunday, January 30, 2011

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!