{SPT} the me who is a pirate
My eyes.
This is what I answer if asked the odd question: what is your favorite part of your body?
My eyes.
For they are not fat. And fat is how I see the rest of me.
But here is the top secret truth: my left eye is the most "flawed" part of my body.
A flaw I cannot fix.
My flaw not too many people know about.
My left eye does not turn to the left. Not even a little bit.
"No it is not a lazy eye." The answer to the question I am always asked.
"But I have never noticed" is what is said next.
Right. You haven't. Because my parents were amazing.
My mother did not want me to feel different.
She taught me to turn my head.
For a little while I wore an eye patch as a child.
A pirate at three.
When I need to see something to the left,
I turn my head.
It is that simple.
So you never notice. And I don't really think about it....
unless...
I am in fourth grade, and the doctors and my parents decide that surgery is a good idea. To move my eye forward, for cosmetic reasons, to make sure that it will not move as I age and take a look around and just see what they find. A teaching hospital. Let's just see if maybe we might be able to do something. I am easily bribed by the promise of a cabbage patch kid with a tooth. But would I have agreed if I would have known the torment a fourth grade classmate would provide during my healing process? "Your eye is all red. Gross." For weeks the redness does not go away. For weeks his words torment me. I wear my mom's sunglasses for the first few days hoping no one will notice the redness. But who doesn't notice the fourth grader in adult sunglasses? (I chuckle through tears as I write that.) I do not want to miss any school. I already missed two weeks at the beginning of the year, I love my teacher, I love reading Caddie Woodlawn, I will not miss any more days.
I am 15 and studying genetics in Biology. This is my favorite part of this class so far. I love punnett squares. On this day, we spend the hour talking about genetic mutations. Mutants. I have never thought about the possibility that my eye is a result of a genetic mutation. A little part of me almost dies that day as I think about Darwin and evolution and the idea that the mutants are not wanted. I talk to my teacher after class, wanting to understand why we would use the word mutation when talking about a person's genes. He is very kind.
I am 22 and have been out with a friend. Someone I feel comfortable with. I am walking to my car, and she calls my name. My eyes are focused on my car as I turn around quickly. I hear, "God, what is wrong with your eyes?" Because my eyes were focused on one thing, but my brain said, "turn back around," she noticed my eye. I can still hear her voice. Loud. Harsh. Cruel. Confused.
I am 25 and realize that I might need glasses for distance. I do not want to go to the eye doctor. I have not been since I was a child. I decide to go to an opthalmologist because maybe he will have seen this before and not be weird about it. As I make the appointment, I explain "my left eye has duane's retraction syndrome. But that is not why I am making the appointment. I am making the appointment because I think I need glasses." "What is that? How do you spell that?" I have to explain. Fine. Still, I hope it won't be weird. But when I get there, I have to see a young woman first. Someone who has not seen this before. Someone who did not know what it means on my chart. Someone who does not know how to react when my eye does not turn. Yes, I know I look normal. But this is what happens when you say, "please follow my pen with your eyes." And when the doctor comes in, "Well, you are quite the celebrity today. Quite a buzz about you in this office. Most of these people have never seen this before, and I have only seen it in books." But I don't want to be a celebrity. I just want to know if I need glasses. I wonder, were those my eyes in the book? Could be, because they took pictures when I was a child. I do not want to follow the pen, the light, your finger to the left over and over again so you can see my eye not turn.
I am 29. And I finally realize my favorite part of this story. The support of family when I was younger. The support, to be honest, that I don't really remember because I never felt different, never noticed my eye, never had trouble reading, seeing, playing, and so on...the support that happened before my memories really began. The support that caused me to have to think about which eye had the problem because I never noticed it growing up. The support that began as soon as my parents realized something was wrong. I imagine the fear and confusion they must have felt. "What is wrong with her eye? What is happening? What did we do? Can she use it? Will she read? What do we do?" But they did something. They did not ignore it. Hours holding the red apple is front of me and teaching me to turn my head. And support from my grandfather through his offer to see if the doctors could take the muscle from his left eye. He was born with mostly blindness in that eye and wanted to give me any parts of his eye that would work and help me not be different. Not a possibility but the offer of the gift is even greater than actually receiving it.
They said I wouldn't read or wouldn't read very well. My mother did not believe them. She spent hours doing what she could to help me realize that I was in control of my eyes, how I would turn my head, how I would see things. I wore the eye patch for a few months so that I would turn my head. It became so automatic that the eye patch was not needed, and it was almost like the eye patch became invisible. She taught me to turn my head so that I would embrace this flaw. This flaw I never really think about because it does not affect me. They said I wouldn't read very well. But I read for a living...hmmm...guess they are not always right.
I would not change it. I know this secret that I hold. I am a pirate who travels the world through the books that live on the shelves in my home. A pirate who can see it all...
see more "all of me" posts on self portrait tuesday
edited on 5/27/07 to add: if you have arrived at this post because you or your child (or someone else close to you) has duane's retraction syndrome, please feel free to email me at waywardtulip at gmail dot com. and, if i could give parents words of wisdom from my experiences, i would say this: if you can afford for your child to have surgery to help with the movement and appearance of the eye (even if it is only cosmetically), do so. i believe that part of the reason i have been able to embrace this "pirate" in me is because visually, others do not notice that there is a problem with my eye. as a result, duane's did not affect my self-esteem about how i look. people might try to tell you that the surgery isn't necessary. but life is hard enough without feeling like you look different than others.
liz lamoreux
Reader Comments (30)
so beautifully shared.
thank you--
Tears, hugs, love, awe. Beautiful and honest and strong. This is an amazing SPT Liz. Truly amazing. You really can see it all.
I will look at my daughter filled with a renewed strenght. Your story speaks what I feel. You have help me sort through my fears and feelings with this condition that has found itself in my daughter. I will always feel guilty that I have burdened her with this and with the prays that it was me and not her. I pray everyday that technology will advance so they create a "fix" for this. I will teach her to love her differance to be proud that she has the most beautiful blues that leave many jealous.Thank you for giving me the words to sort my emotions. I will save this letter you have posted for her to read one day.
What a beautiful and thoughtful post. I love this, Liz. Isn't it wonderful when you get to a point in life where you can see your "mutation" as a strength, a badge of honor and courage? I think we all have one and, hopefully, we all get to that point in life. I know I did and it was such a relief. Thank you for this wonderful and beautifully written post today. You are an angel!
Hi, I realize that you wrote this post a couple of years ago, but I really needed to write to you. I have twin daughters who are now just over 2 years old. When they were about 7 weeks old, I noticed that one of them was not turning her right eye outward...and as it turns out she was diagnosed with Duane's Syndrome. I was sooo upset at first, crying on the long drive home. All I could think of was how much social 'torture' she would go through as she got older for being different. Your post has absolutely made my day. It is so warming to know that people live such normal lives and turn out so well adjusted. My husband and I do everything we can to make sure that she doesn't think she's different. I want her to always know she can do ANYTHING with her life...there are no limits. She's an amazing girl, and fortunately so far the drs say she has a mild case...she really doesn't seem to need any special treatments at this time. We take her every 6 months to be checked, but so far she's fine. Anyway, I just wanted you to know that your post truly made me smile and cry at the same time...thanks so much for sharing!
Jessica,
Mom to Amelia and Annabella