I’ve seen a dying eye
Run round and round a room
In search of something, as it seemed,
Then cloudier become;
And then, obscure with fog,
And then be soldered down,
Without disclosing what it be,
‘T were blessed to have seen.
– Emily Dickinson
There’s a headshot of me at twenty-two that sits on one of my mother’s end tables. It was an assignment for a college theater class. Black and white. Solemn face. Mouth closed to hide the gap between my front teeth. I was nervous, but excited for the session. I felt like a professional at last. The shots were to be from the shoulders up, so I didn’t have to hide my tumor-filled left hand, my scar-ridden left leg. My eyes are in plain view: the left one strays a little, a side effect of Ollier’s. Ollier’s tends to stray the body—leaving stunted limbs, bloated fingers and toes, wandering eyes, and brains tipped to the left with tumors.
The picture is one of the last formal pieces of evidence that I once had two eyes.
Over ten years later, I posed for another headshot. This time, it was for the cover of my first novel. This time, I dreaded it. Although I’d faced the camera for a driver’s license, student identification card, faculty identification card, and passport, I hadn’t had a formal photo in which you are supposed to look good since my wedding. Those had been bad enough. I constantly had to turn my head at just the right angle to keep the camera’s lens focused elsewhere. My favorite pictures always show a profile or an angle of my face. My husband, Tom, served as a foil and was someone to look at, rather than the camera. Flipping through our wedding album, a stranger might think I had both eyes; only those present knew the truth.
This time, I didn’t have anyone to look at; nothing to keep the attention away from the eye that doesn’t open. I confessed this difficulty to the photographer. “Not that I want you to paint in an eye,” I laughed. “Just make it not so obvious.” He said he had ways to work around it.
The day came. We went out to a friend’s farm, which featured the standard plethora of broken windows and peeling paint on sagging sheds, scraps of machines dotting the yard; a perfect place to distract the observer’s eyes from mine.
When I saw the end result, I loved the color and contrasts of many of the shots—I simply hated each one because I was in them. I looked too fat in some. My hair too wild in others. And each of them showed what I’d feared: my lack of one eye. There were only three that I could stomach—and each of them had been taken at the very end of the session—almost an afterthought, as the photographer and I climbed from the loft of the barn. I let him know my selection, and awaited his email containing the results of the session.
On September 11, 2001, half of a large tumor was removed from my brain. At around the same time, a plane crashed into the Pentagon just a few miles away. I wonder at what point in my operation the Towers crumpled and if the nerve that controlled the movement of my left eye or the other nerve that had controlled my eyelid had been severed at that moment. I looked at my eyes the night before when I had taken my contacts out. I wondered when I would put them in again with the confidence of the young that it wouldn’t be long.
I’ve heard that when we become proficient at reading, we don’t actually see the letters individually. Instead, we see the shapes of words—the outlines tell us what to ingest. When I had visited New York the previous summer, I don’t remember consciously seeing the Towers. I only saw the outline of New York. Had the shape of the Towers never disappeared, I probably would never think about them as two tall I’s. You never notice, never appreciate the pattern of something until it is gone.
Tom told me later that the neurosurgeon had warned us how traumatic this would be before the operation, that this would be much worse than anything I’d gone through before. The neurosurgeon was referring to the other operations on other Ollier’s tumors I’d had before this one.
I don’t remember this warning. I had been broken, cut open and stretched and stitched shut many times before. I probably didn’t believe him. This would be just one more surgery in a line of surgeries. I do remember my neurosurgeon had told me the possible side effects: stroke, vegetation, death. My older brother’s girlfriend had compiled a series of stories similar to mine and sent them to me via express mail: the removal of a boney tumor from the frontal lobe, the cases overwhelmingly female, the loss of control of the corresponding eye. I stopped reading them. Mine would be different, I was certain. I would not let that happen to me.
The paralysis was only temporary, I was told. Usually the nerves heal and the use of the muscles would return. My neurosurgeon’s interns said surgery could correct it, if necessary. I was a staunch believer in the power of medicine at the time. I drank in every word, although I don’t know why, since medicine has disappointed me since my diagnosis of Ollier’s. My original orthopedic surgeon had waved away the possibility of brain tumors when my parents asked. I nearly asphyxiated on my own vomit because a nurse in post-op didn’t believe my cries about needing to throw up. No staff member thought it odd that I was still on oxygen when I was put into my hospital room. My mother, on her way to the cafeteria for a snack, saw me pass out and my lips turn blue.
For the first month after my brain surgery, I lay low socially. Only Tom, my physical therapist, and my housemates saw me. The two exceptions were my pastor and the mother of one of my college friends—a chocolatier, with a passion for flowers. She brought bouquet after bouquet of vibrant flowers to fill my tiny apartment.
Other side effects of the surgery included mild aphasia and a slight paralysis of my right side. My aphasia lessened and nearly vanished, the slight paralysis of my right side had been muscled out, but my eye remained still.
As a child I was out in public as soon as possible after my latest surgery: I sang a solo while in a body cast; I was an extra in the high school fall musical while I hobbled on crutches because of an apparatus to stretch my lower left leg to normal length. The camera chased me throughout childhood. For the most part, I skillfully hid my hand with flowing sleeves, my scarred leg with long skirts and dark tights from the truth-seeking lens.
Now, I waited in the car while Tom bought groceries. I didn’t even go to the church whose members had laid hands on me and prayed the Sunday before the surgery. I shunned the camera. Only photographs of profiles and carefully angled heads to are now scattered through the last decade of my life.
I had depended on my cheerful countenance to erase any viewer’s discomfort with the rest of my body. It was gone. I had nothing left.
I was raised in a family furtively obsessed with its image. We were poor, so we hid that by being a “good-looking family.” I heard this over and over, as though this was something to cover our other deficiencies. There’s a picture of my parents when they were first married: both are thin with perfectly sculpted bodies. My father wears a form-fitting shirt with several buttons unbuttoned; my mother is in a gypsy blouse. A few years later, there’s a picture of my family in front of my grandmother’s garden. My father is in dress pants and a shirt; my mother is in a yellow sundress. Ben stands with pride in a plaid shirt. David, dressed in white, is in my mother’s arms. I stand apart, wearing a rainbow dress, my wispy blond hair with a mind of its own. The observant eye notes my left arm is shorter; it sticks out, away from my side. I grumpily look at the camera. Was I aware of my deficiency then? Did I know that I didn’t quite fit in with the good-looking family?
I remember my last school photo in which I looked comfortable with myself. Third grade. I’d just come in from recess. My bangs are greasy, my smile wild. I’m wearing my favorite shirt at the time: one with pink stripes and a pocket. You can tell I’m pulling down the hem with excitement by how the neck is stretched. This was the year after my eye surgery, the surgery to correct my straying eye. My glasses are off. My eye still wandering slightly. My mother always told me to remove my glasses for school pictures. The glare hid my face, she told me. In high school, I took off my glasses whenever I sang in a choir concert. I enjoyed the anonymity. If I couldn’t see them, they couldn’t see me or my uneven legs and arms.
Sometime after that third-grade shot, I self-consciously look at the camera. My darkening hair is pushed back by a pink plastic headband. I’m wearing my favorite sweatshirt at the time: black with sneakers printed on the front. Glasses off. Blind. Hoping to be invisible.
It is the doom of every adolescent to feel this way. But I knew it was truer with me. Kids were beginning to pair off: we called it “going with.” The couples gave each other necklace chains to stake their territory. One day I arrived at school with a gold chain, purchased at the town’s only dress shop.
“That’s not true,” I was told. “You aren’t going with anybody.”
The chain peeked out from under my back sweatshirt. I was acting a part. Trying to belong to a group I know I will never join. Not only did I not belong to the family blessed with good looks, I was apart from my community.
“Be glad the tumors aren’t on your skull. On your face,” someone once told me. I knew it was well-meant, but it terrified me. Though he didn’t say it, I knew that would have been much worse. I remembered what he said when my brain tumor was discovered. The tumor had been there all along, biding its time, waiting to be unveiled, waiting to imprint itself on my face with an eye that would never open again.
A woman from our church approached my mother after the diagnosis. She told my mother that I was that way because of a past sin. I was punishment for that sin. Perhaps that explains the front-and-center appearances that followed. The piano lessons, voice lessons. Playing the flute despite the difficulties with my left hand. My theater major in college. All ways to keep me from the shadows of sin.
I don’t remember ever saying, or even thinking, no to any of those things. I wonder if these activities were unconsciously encouraged by my parents’ determination to remain a “good looking” family. A way to prove to myself that my family wasn’t ashamed of my deficiencies. My writing was accepted, even bragged about, but never encouraged in the way that piano and theatre and voice lessons were. Writing was too solitary. Too much in the shadows.
Tom finally convinced me to get a cup of coffee at a local bookstore several weeks after the surgery. Two friends from college were there. I had been present at their commitment ceremony not long before my surgery. There’s a picture of me between them at the celebration. Hair under control. Eyes crinkled in joy. They jumped up and hugged me. If they wanted to stare, they didn’t. A good beginning. I began to think maybe I was blowing this all out of proportion. Maybe it wasn’t such a shock to people who saw my closed eye. Maybe it was just me who noticed.
Still, I avoided cameras as much as possible. Still, comments were made that convinced me I was not the only one disturbed by my appearance. An artist friend took pictures of my useless eye, giant fingers, and then carelessly reported that a high school student of his thought I “looked retarded” because of the expression my eye forced across my face. A coworker told me people might think I looked angry in meetings because of my lopsided expression. A technician, somehow not remembering or caring I could hear her while sedated for a pre-op procedure, cried out: “Oh my God! What is that?” I assume that was when she saw the tumors in my fingers. This was the reality everyone held from me by the skin of their teeth.
When I was in graduate school, I volunteered as a creative writing tutor at a center for the physically and mentally disabled. During my interview for the position, the supervisor showed me around the facility. When we rode the elevator up to her office, several participants with varying types and degrees of disabilities got on with us. Later, she told me it had been a good test for me.
“I wanted to see how you dealt with some pretty serious disabilities,” she said. “You acted totally natural.”
I didn’t tell her the two things that I always feel when I meet people who are more visibly disabled than I am: relief and comfort. Relief and comfort because I know they have an even harder time in the outside world than I ever will; comfort and relief because I can shed my attempts to be normal. I can be one of them.
Six months after my brain surgery, my neuro-ophthalmologist broke the news: my eye had not improved as much as he had hoped. I had little control over my left eyelid, and no control over the eyeball. He snorted at my neurosurgeon’s interns’ insistence of the power of surgery.
“I can make the eye more centered, but as far as movement is concerned, there’s no way to repair that,” he said, half to me and half to his micro-recorder with which he made his medical notes. “It’s better to leave it as it is. Protected by your eyelid. That way, if something ever happens to your right eye—God forbid—we have something to work with.”
I saw the final photographs for my book cover initially on my cell phone, liked them immensely, and sent them to the cover designer. It took a day for me to notice something was wrong. When I finally saw them on the larger screen on my laptop, I realized my left eye had been reopened. Edited in. It had been cleverly done. Had I been a stranger to myself, I probably wouldn’t have noticed—especially not in a photo that was an inch squared. But I knew it was a lie. I didn’t look like that. Not anymore. It took me another day to gather the courage to contact the photographer. For a while, I tried to convince myself that it didn’t matter—that it would be better for me to appear normal to the rest of the world. They’d figure it out eventually, I knew, but it would buy me a little more time. Time for the world to consider me one of them. After all, I had once looked that way.
“Had” is the operative word: in the solid past. You cannot fix that tense.
The photographer reverted the edit, the altered version replaced by the truth the camera had tried to scream to the world.
When I saw the book with the final cover for the first time, I studied the head shot. The excitement of seeing my first novel in print with a shocking red cover mingled with a sad recognition of my unedited self in the tiny portrait on the back cover. Tom pulled out his camera. Flipping the book over, I hid myself once more. I turned my head.