I can't find my body. I see my mother's grimacing face, I see pale green walls. Bags of blood and bags of yellow fluid dangle from an IV pole. How can I see these, yet not feel my body? The lights are bright, never ending. Because of these lights, I remember I am in the ICU. There is no day or night in the ICU.
Nurses' hands touch me, roll me to the left. I scream at the pain of movement, but make no sound. No one pays attention to my thoughts. The nurse moves me to the right, now. I try to scream again and fail. She removes my bloody sheets that can't stay clean.
I hear fragments.“Dying.”“So Young.” But I'm outside of it all. I'm no part of their conversations. My mother's familiar face seems foreign. I tell my mind to return to my body. It disobeys. My mind resists my body, and I don't want to go back to the pain. I don't want to die, but I somehow know I can't return to the pain.
I feel sad for my mother. My mother will miss me. I want her to know I don't fear dying. I think I say, “It's OK to die,” but I can't be sure.
Nothing is stable. The world shifts. The IV stand and my mother float on waves. Drops of light and color rain in the room, but they move in the wrong direction. They move upwards and sideways and diagonally. I just want everything to be still.
The doctors sound so serious. They seem foolish, I'm not even in the body they show such concern for. I am almost dead when I have surgery. A bright metal light glares in my eyes, the metal around me is ice cold; the masked faces look down at me, so animated, focused on me, and I can't move. I rouse before the anesthetic wears away naturally. I am torn at the middle; flesh, tendons, muscles, and organs rip. I flash to a medieval scene; I am being stretched on a rack. I scream for God to help me. God help me over and over until a nurse with jet black hair bends over my face and screams for me to shut-up. Someone must have given me an injection because the scene is lost.
A long, purplish-pink scar, thick from repeated slicing, stretches from my pubic bone, curves around my navel and almost reaches my sternum. A shorter, purpler scar cuts horizontally across my right abdomen. The longest scar stretches from my chest bone, along my rib cage to my upper back. My freshest scars—one across my naval, the other a bright pink, wormlike inch crawling up the left side of my abdomen—were futile, the result of a failed, unnecessary surgery.
You can look at my incisions and tell the personalities of my surgeons. My lung surgeon was a quiet, old man, but steady and determined. His scar is a faint line; he took care to staple the seams tightly. My abdominal surgeons were more gregarious. They looked me in the eye, sat on my bed as they told me my fate. Their scars are thick, but my near-death gave them restricted time, so I understand the scars. My smallest and newest scars, only months old, are hideous and not healing properly. The gynecological surgeon that caused them only wanted to cut me.
He was trying to get at a dermoid cyst, a cyst I recently learned never existed. He opened me up, filled me with gas, and closed me back up doing nothing but creating scars. He told me my intestines were a mess, adhered to my abdominal wall. He left me unable to walk for days.
When I first met him months prior, I spoke his language, adeptly relating my ten-year medical history in one paragraph:
“In August of '93, right before my senior year of college at Georgetown I had an emergency colectomy to remove my large intestine because an acute flare-up of ulcerative colitis, and had an ileostomy. In 1997, due to recurrent pneumonia which caused kidney failure, I had a right middle lobectomy to remove one-third of my lung. Afterwards, I had three reconstructive abdominal surgeries—including one emergency surgery due to complications—to create an internal pouch from the end of my small intestine to re-attach it to my rectum and remove the ileostomy.” I told him nothing of the emotional ramifications of living as an ostomate, I told him nothing of the pain and intermittent disturbances to my life.
I looked across the desk at his notes, hoping he would later be able to understand his abbreviations. Years of disease and agony were summed up to: '93 UC, emerg colec/ileo; '97 pneu, rml, kidney fail; '97 ileoanalanamostosis/hemot. I begged him to preserve my fertility and my intestines.
On a note pad, he crudely drew his surgical plan. He sketched me: headless, armless below the elbow, legless below the knee, with lines to indicate my sides, a triangle for my vagina and two half moons for my breasts. He drew my existing scars as short, straight lines. I wanted to fix them, bend the lines. I told him he forgot my lung surgery and he hastily threw in an extra line. He marked other scars, future scars, where he'd try to reach my ovaries around my intestines. A faceless torso of sharp, straight graphite lines to represent me. He didn't even put a dot for my belly-button.
I am emaciated from illness. My arms black and blue from hundreds of blood draws and injections, my legs bloated with water, my muscles atrophied, my hair falling out in clumps. I have rips and tears, intestines and appliances, disrupting what was once smooth skin. The halves of my stomach are stapled together awkwardly; they don't match properly and the red edges of flesh overlap. The end of my small intestine is yanked through the skin on my right side, and a plastic bag catches the ever-flowing waste.
I have an ileostomy. My actual gut pushes through my skin. My intestines feel air; the world can see the most hideous part of me. I examine my stoma, this glimpse of my insides: a dark-pink, shiny mound protruding about an inch out of my abdomen, my skin closed tight around it. I watch as liquid waste slowly pours out of the center; I see the stoma moving and gently squeezing on its own, as if it is a foreign, living creature trying to get out of me and I am merely its host. Every few days I change the bag in a meticulous routine necessary to protect the skin from the acidic, burning excrement. I rip the pouch from my skin, pulling the peach fuzz hairs of my abdomen, quickly clean the slimy pink stump, catching any escaping waste with wads of toilet paper, squeeze out a ring of a cement-like mixture around the stoma, and carefully attach a new plastic bag. The bag has a hole cut to match the diameter of the stoma (mine stabilizes at 1 1/4 inches), and, at the bottom, a clip closes a second opening used to empty the bag throughout the day (and evening, and night, and morning, and every few hours or every half hour or every fifteen minutes).
After my first surgery, I grew accustomed to my new body. I gained strength, I learned how to walk again, I regained some of the pounds I lost. The ileostomy became the new center of my life. My hand rarely left my abdomen, feeling the size of the bag's bulge and covering any noise my stoma would make from uncontrollable gas, checking for leakage. My eyes perpetually scouted bathrooms. I meticulously analyzed every bite of food and predicted its effect. I worked, drank beer, danced, and wondered if anyone could sense the tumult in my mind from the fear of discovery. I learned tricks of concealment: one-piece body suits to wear under all clothing should my shirt ride up and expose my gut; a sweater to tie around my waist no matter what the temperature or time of year.
I lived this way for four years before my reconstructive surgeries uniting my small intestine to my rectum. The scar marking the spot serves to remind me my intestines still control me, still have the power to determine my future and expose my weaknesses to others; but they are fully inside me now, fully contained in my skin. I still obsess over the process going on inside me, still scrutinize the effects of every bite of food, still worry my intestines will betray me and put me back in the hospital. I still scout bathrooms, still need to empty my small intestines whenever possible. But I'm proud to have my belly back; it's better to show scars than guts. Scars are marks of history, they are supposed to be on skin, they are sanctioned.
Before the ulcerative colitis that started a chain reaction of immune system disorders and diseases, I had only had the flu, some earaches, and the occasional cold. Illness wasn't a preoccupation, it wasn't a way of life, it was an inconvenience. When I first got sick, it was almost romantic. I was young and sick, what drama. I was inundated with cards and flowers and well-wishes. But as time wore on and the illness persisted, the visits lessened, the gifts stopped. I was no longer interesting; illness became a part of my existence. I barely remember normalcy; I've adapted to something entirely different. But even as I claim to redefine normalcy, I can't explain the need to constantly compare myself to other, healthier bodies acting their age.
The last time I was in the hospital for an intestinal blockage, my gut was distended beyond recognition. I was futilely injected with morphine to control the pain, but it only caused more vomiting and nausea. My abdominal scars appeared vibrant, transformed from the aged, faded purple to a brilliant pink, as if they were reminding me why I was in pain. Lying in the hospital bed with a tube shoved down my nose into my stomach, drops of blood on my gown and sheets from failed IVs and blood draws, cold sweat soaking my back against the rubber mattress, the only thing I could manage was the TV remote. I watched Janet Jackson present a Grammy award wearing a half top to display her six-pack abs. I saw a special on twenty-one-year-old girls with perfect bodies spending thousands of dollars to have tummy tucks to look like Britney Spears. I wondered if they knew what other possibilities there were for stomachs. I wondered if they were thankful they could do sit ups and crunches when I struggled to shuffle a lap around the nurses' station in my oversized hospital gown and dirty socks, clinging to my IV pole, trying to build up my strength. I see these perfect stomachs and I see illness and disease and pain and recovery. Every belly has significance.
Illness and this body structure my experience of the world, now. My identity has been re-constructed to meet the demands of my body. This body contains me, traps me in its limitations. And I fear the precariousness and unpredictable elasticity of this body. A body with the power to inhibit my desires of bearing children and enjoying a long life. Medicine dismantles me: I've been broken down into guts, lungs, and ovaries, yet I instinctively feel I am more than the sum of my parts. I can't reconcile this feeling with my medical records, with the doctors' interpretation of me. I wonder if they see the larger significance, of the loss of the mind and spirit at the moment the body fails. I wonder if they think about what truly exists at the border of mortality.