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.”