Sunday, July 04, 2004

Congenital Ptosis

I was my parents’ second child, the first having died during delivery by, family story has it, a drunken doctor. In response to my presence in her womb my mother’s body mobilized its earlier-awakened forces with one intention: to drive this alien presence, me, out of there as quickly as possible. For my mother’s blood lacked the Rh factor while my blood was, I suppose, loaded with it. I’m here, as you see, so that story has a happy ending, but my mother endured several more pregnancies, all of them ending with dead babies, often with babies she knew were dead even as she continued to carry them. I have never felt anything but a deep compassion for my mother regarding this. Still, I don't know why she continued having babies—or perhaps this is the arrogant view of someone from a generation with more choices—for she never seemed particularly suited to mothering. But to give her credit, she never tried to make me her "project," and as may be becoming clear I grew up and thrived in my way in an atmosphere of benign or uninterested neglect.

I know how fortunate I am both to be here and to be really very healthy after the attack my little survivor’s body weathered in the womb. But I was left with one reminder of the battle, one little Purple Heart, and that is my eyes.

I was born with bilateral ptosis, a condition in which parts of the eyelid muscles are paralyzed. My mother realized early on that this was a problem, as evidenced in the formal toddler-age portraits in which I am posed always looking down at something, a book, say, or a doll. She pursued medical treatment for me and so I had surgery, one eyelid at a time, when I was three or four, an event I still remember. So now I could look at the camera but those pictures show something still broken as I tilt my head back to gain purchase with my vision through the narrow aperture. Of course I was teased, as was everyone I expect, but I was spectacularly ill-prepared to deal with it. The neighborhood kids called me "look up sky girl," a phrase which still has power over me but which, as I say it, seems like a good first name for a happy Native American child or perhaps some badly-translated Russian. I always had friends, they always were kind, but the rest of the time was filled with roaming.

When I was 17 I had surgery yet again, this time wiring my eyelids to my eyebrows, so that I at least had some control over their use. I coped, I compensated, but I never talked about it. There was a long period during which if someone said to me, "You look sleepy," I’d immediately begin to coolly calculate whether the person was really so valuable as a friend.

At 31 another surgery, this time because there had yet to be a ptosis surgery for this year’s class in the teaching hospital and also because the last surgery was failing, leaving an eyelid curling into my eye. I was treated like a giant walking pair of eyelids in the hospital but this one utilized fascia taken from my leg and resulted in some somewhat normal looking and reasonably open eyelids. (I was visiting a good friend’s brother-in-law shortly after surgery. He was a biker type who took a look at the zipper running down my thigh and, pointing, said, "You get that in a knife fight?")

I became able to talk to friends about it, then acquaintances. I stopped being a connoisseur of ptosis surgery and stopped pointing out ptosis sufferers I spotted among public figures ("Robert Mitchum, check it out! Ptosis.") to others.

My eyes had other attention grabbers: very poor vision, irritation (wired the other way, I have trouble keeping them closed), a corneal disease, one failed cornea transplant, a second possibly failing, a third yet to come. With all this new attention to my eyes I’ve noticed that my last ptosis surgery has mostly failed. I see my eyes at rest narrow into tiny slits and worry that folks may judge me angry or mean. So I take care in conversations to use my eyebrows to open my eyes wider, producing a reaction, I imagine, of wonder at this bright interest always wedded to a look of mild surprise.

I'm okay. Most days I can still see well enough to drive. I'm as flawed as they come. I'm perfect.

With My Dad, 1944