The scent of a pre-op is unmistakable: rubbing alcohol, plastic, blood, and breaths of anesthesia. Such places are like Limbo. You are waiting for Something to Happen, and the only way you know that Something is About to Happen is the swish of scrubs meant only for you—the casual tone of voices that stride toward you long before the words become clear.
I’m sitting on a gurney in Mount Sinai Hospital’s pre-op in New York City, waiting to have two of my tumor-laden fingers amputated. It is, admittedly, the least traumatic of the numerous surgeries I have had in the last twenty-five years of my life. I was the one who found the doctor’s office number; I took the subway alone for the first consultation; I asked such detailed questions during the second appointment that the doctor laughed and said he might as well go play golf the day of the surgery—I seemed to have everything under control.
Although my husband and I had discussed the amputation for some time, as I became more and more convinced that it needed to happen, I grew silent on the subject. The timing was ideal. It was the summer between my two years of graduate school. We had good health insurance. Tom had a job that would allow time off. He made just enough money so we wouldn’t need to worry about the rent for our studio in Harlem. I made the initial appointment weeks in advance, but said nothing to Tom until the day before.
We’d been married for three years. Tom knew about everything that had happened in my life before. He was also familiar with that inner world that I constantly kept from him. I knew it hurt him, but all he said was: “I wondered why you stopped looking for a summer job.”
He is sitting in a waiting room, waiting for the oversized pager to call him to my side. I don’t know what it’s like to be the one who must wait. I wonder which is worse: waiting for the Something to Happen to you or waiting for the Something to Happen to someone you love.
You have to shed everything when you go into pre-op. Clothes, underwear, earrings, nose ring, right-handed wedding ring, hair clips. Nothing but a giant hospital gown and thin slippers are between you and the sterile air conditioning. Before I left the dressing room, I looked at my left fingers one last time. I lifted them to my lips and caressed them with a kiss. “I’m sorry,” I said. “Goodbye.” I did not look at them again.
Now I wait alone on a gurney in a half-empty pre-op, legs swinging back and forth. I’m already hooked up to an IV; it had taken over a half hour for a nurse (in a succession of three) to find a vein plump enough to plunge a needle through. They each had fumbled around, digging the needle through my soon-bruised flesh. The last one to do it was considered a magician when it came to finding veins, the second nurse told me. I didn’t ask why he hadn’t been called earlier.
The surgeon appears. “Ready?”
He holds his arm out as though in welcome. I struggle to my feet in surprise. A doctor has never escorted me into the OR. In the past, I was sedated by the time I was wheeled into the war room. Sometimes a doctor hovered for a moment before the mask is lowered, granting me one last moment before he practiced his genius. But today my surgeon helps me with the IV stand as I enter. We very nearly touch hands. I lay down on something that resembles the kind of table you see in documentaries about lethal injection: a platform with two arms outstretched. Both of my arms are spread upon them. He introduces me to another surgeon. They laugh and talk over my head; cold liquid shoots through my veins.
“We’re just sedating you, not putting you under,” I hear the other doctor say. “That way you’ll recover faster and we can give you more pain meds.”
“Okay,” I think I say.
He does not ask me the usual questions: What day is it today? When is your birthday? Can you count back from one-hundred? It is refreshing. I’ve always known the days, the birthdays; I can barely count back from one-hundred when wide awake. Instead he asks me, “Do you feel this? Or this? Or this?”
I wait for the sting that never arrives. “No,” I think I say.
A tent comes between me and my neck, my arms, my hands, my torso. I am a head floating in a starry sky, surrounded by muffled voices, the bleep of machines. The sky is dark blue with sparkles of light that blink on and off; I realize later that these must have been the fierce OR lights prickling the weaving of the cloth between me and my body.
I’ve never been simply sedated during an entire operation. It is an eerie state. All inhibitions disappear. My imagination runs around my clouded brain. I realize that if I talk to the stars, they will shimmer with each syllable. I start to talk politics: Fuck George Bush, I say. Fuck his war. Fuck his war. He really is a fucker.
I seem to like the word fuck when I’m in the OR. I once cursed a doctor over and over after he dismissed my husband from my side: Fuck you! I shouted. Fuck you! I wanted to say goodbye!
I’ve wondered at this burst of emotion. Perhaps I feel free enough at last to say what I truly think of men who cut my body; perhaps it is just a primal scream.
I start to sing, because I find the stars shimmer more brightly in song. I haphazardly sing pieces of my favorite hymns: Be thou my vision o Lord of my heart; naught be all else to me save that thou art…Praise God to Whom all blessings flow; Praise him all creatures here below…What is this place where we are meeting…only a house the earth its floor…Be thou my vision…My life flows on in endless song above earth’s lamentation…Be thou my vision o Lord of my heart…
I am frustrated because I know my pitch is off—if there was someone who could cue the right pitch I could carry the tune better and more stars would shimmer along. I sing louder in hopes that the volume might do the trick. I am angry. At myself. At the stubborn stars. At the screeching that begins to ring in my ears.
My hymn sing swings into the silence of post-op. Someone is talking to me, asking if I have any pain. The stars have disappeared. A foggy brightness has taken their place. My arm is elevated above my head.
“No,” I say through the fog. “No. I am fine.”
But then there is a sensation I have never felt before: it is as if water is dripping down my arm with no towel to stop it. It starts at the tips of my fingers and rolls down. The pain is so subtle, I don’t name it as pain until it has engulfed my hand and is reaching for my wrist, then elbow, then shoulder.
“No,” I scream. “No, it hurts! It hurts! It hurts!” I wonder if they can hear me, or if it is all in my head. My fingers are supposed to be gone; they are already betraying me.
It is my first experience with phantom pain.
Struggling against the tumors in my leg was the focus of my childhood. I was born with a disease called Ollier’s, which causes bony tumors on the left side of my body. My left leg was stunted and twisted as a result. For nearly ten years I went through surgery after surgery to correct the crooked bone with metal apparatuses applied to make my femur and fibula/tibia longer.
My left middle and ring fingers were swollen and bent by similar tumors. I shoved them behind my back in the hopes that no one else would notice. Few photographs reveal their presence. In a black-and-white picture of my kindergarten class, I am seated up front with wispy blond hair that has a permanent cowlick, giant glasses and jeans rolled up on the left side because that leg is two inches shorter. Whenever I see that photograph, I notice right away that I am crossing my arms in order to hide that hand.
I recently found a picture from when I was eighteen, sitting on the dingy couch of my brother’s college apartment. I am gesturing wildly with my hands, my fingers on full display. It surprised me, seeing them caught by the blatant flash of a camera. I wonder why my parents ignored their presence. Why none of my orthopedic surgeons paused and said: Why don’t we do something about this?
One of the few times I remember discussing my fingers openly was when I was five or six years old. I was sitting in the bathtub. My mother was washing out a flimsy cup-like thing that I now know was a diaphragm. I asked her what it was; she said it was something that husbands and wives used. I looked at the ring on my mother’s left hand as she washed her diaphragm and said, “I won’t be able to wear a ring on my left hand. Maybe no one will marry me.”
“Any man who loves you won’t care about that,” she said.
Thus began my worry that I wouldn’t find that man. When people in my school started dating I became convinced that I didn’t have a boyfriend because of those fingers. It was confirmed when I met a boy at a forensics match in high school my sophomore year. He was tall, blonde and wore black. He and his partner in forensics were hanging out in one of the classrooms, waiting for their time to perform—my partner and I had joined them. At one point he laughed and placed both of his hands out to slap and I obliged. I saw the shock in his eyes and realized what I had done. I had exposed myself to this stranger; a clumsy sixteen-year-old boy who I was certain liked me and just might ask me out. He had the decency to squelch his revulsion but didn’t speak to me again. He and my forensics partner started dating a few days later. Perhaps he’d had no interest in me to begin with—perhaps he had always liked her more. But his uncomfortable disgust had been palpable.
When Tom and I met I made a point to hide my hand: I always made sure he held my right hand; I wore long-sleeved shirts that draped over my fingers. We met during college, on a campus twelve-hundred miles from home where no one knew me. I was determined to cloak that hand for as long as possible. One friend confessed to me at the end of our senior year that she’d never noticed my hand until the last day of an acting class. Ten years after graduation, one said that she’d only noticed it until we worked together on the campus paper, long after our friendship had begun. “I was surprised,” she said. “I’m normally very observant.”
I don’t know how Tom noticed it, but he ventured the topic one night a few weeks into our relationship as we sat in the local Waffle House. “Why didn’t you tell me?”
I stared at the table and at the pile of napkins I’d shredded. “I figured you wouldn’t like me once you knew.”
Years later he told me he felt bad that night.
“Why?”
“Because I hadn’t noticed before then.”
“That was the whole point!”
Other than the automatic hiding, I ignored my fingers during college. I’d secured friends and a boyfriend who didn’t care. I was always conscious of them, but at the same time I accepted them.
It was my mother who dispelled the façade three weeks before my wedding with a phone call. I had been home at Christmas, and she told me that she and my father had noticed the tumors had grown bigger. “Since we see you so rarely,” she said. “We noticed right away.”
This call came nearly three months after Christmas. I suppose my mother didn’t want to say this to my face; I suppose it was easier to tell me on the phone.
I consulted an orthopedic surgeon a week later about the possibility of amputation. He was dismissive about my mother’s concern. “Do they hamper you?”
“No.”
“Do they hurt?”
“No.”
“You’re getting married and moving to New York, right?”
“Yes.”
“I think you’ve got enough on your plate for now. When they start hurting or hampering you, talk to me or another doctor. Until then, I wouldn’t recommend it.”
I let them fade away into my subconscious again. A doctor was unconcerned. That should be enough. I didn’t tell my mother about the doctor’s visit. She never mentioned my fingers again.
My oncologist brought it up after I had completed a round of radiation at Massachusetts General to kill off the rest of a brain tumor caused by Ollier’s that had only been partially removed through surgery two years before. He was concerned not only cosmetically but for the chance of bone cancer.
“You should get them removed before they get out of hand,” he said over the phone after I’d returned to New York. He paused, realizing what he’d said, and laughed. “You know what I mean.”
I laughed too. But I was applying for graduate school. I wanted my old life to return with a few exceptions: I got my nose pierced and my hair dyed red. I decided that after seven weeks of radiation and a lifetime of surgeries I should go ahead and fulfill some quiet fantasies. Even applying for an MFA in creative writing was somewhat a response to winning the final battle between me and tumors. I let his concern retreat into the space in my brain that had once been filled with a tumor.
Phantom pain is by degrees. There is the extreme pain, like I experienced in the hospital. There is a middling pain that still shoots through my hands at random times; it will feel like my missing finger muscles are contracting tighter and tighter and there is no way to loosen them. I have never lost the sense of them being there. They feel present at every moment—more so than my remaining fingers.
But there is one sensation that only lasted a few weeks after the amputation: a sense of sand. I wore a brace around my hand and wrist for three weeks; when I slept I had to keep my hand over my head. The first night when I could sleep without the brace and my hand down, I dreamed that I was buried in a beach of soft sand. I tried to dig myself out. The sand kept slipping through my fingers. I woke up and found my left hand clawing at my left breast. For a long time that sensation came and went, most often at night when the beach dream returned; sometimes a thigh, an arm, my stomach was eaten by the quicksand of my fingers. One day it disappeared. I imagine my nerves were distraught—they were trying to make sense of this new reality as much as I was. I wonder if my fingers were saying goodbye as I had said goodbye: the caress of the lips, the warmth of my breath, the whisper of sadness.
The nurse in the post-op shoots pain-killer into my veins. I briefly return to my foggy state. But this time I am more grounded in reality: I need to pee. I have never had to pee as I do now.
“I need to pee,” I whisper to the IV. I wonder why they didn’t insert a catheter. They always insert a catheter. “I need to pee,” I say to the flying figures past the curtain around me. “I need to pee!” I scream.
Someone finally hears me, tells me to raise my butt and places a bedpan beneath me. I am lucid enough to be embarrassed by this. I wait for the relief. It does not come. I try to force the relief. It still refuses to come.
Too soon someone returns. “Are you done?”
“No. I can’t do it.”
“Sometimes that happens. Just wait a bit longer.”
Someone returns and repeats the advice. I am angry now. Angry that this person’s voice is so complacent in the face of my suffering. Angry as someone pulls the bedpan out.
“We’ll try later,” someone says.
It is only then that the relief comes. As they scurry around, mopping up what had caused so much pain, I am embarrassed. I am relieved. I am amused at the trouble it causes.
***
Someone decides it is time for me to leave post-op. “Your husband’s waiting,” a woman’s voice says. She and a young man help me off the gurney. The ties on my gown loosen, and as they guide me to a wheelchair, it slips off.
For a brief second, I am bare. Every scar, every bulge of twisted bones that still chain me to Ollier’s is open to the world. The woman and man certainly have seen this and worse in their time, but I wonder if a bit of revulsion ripples through their minds before the man quickly wraps me in decency.
The gown slips again as Tom helps me dress. The woman stands by to watch, which annoys me. Get out of here, I want to say. Fuck you and your eyes. But I have returned to a sense of decorum. Such words cannot be forgiven in this state. When I am dressed, she hands me a baggie that holds my wedding ring, my earrings, my clips, my nose ring. The bag jingles.
Tom heads into the street to hail a taxi. For a moment I stand alone on a beautiful day in late June. Mount Sinai is next to Central Park. Cars rush past; a bus trundles by. I see the walls that surround the Park flash in and out of view behind the traffic. The Park’s trees arch overhead, their leaves swaying goodbye or hello—I can’t decide which.