Out of Order
Surgical Center, October 18, 8 p.m.
It felt like I’d been trying to open my eyes for hours. Only I couldn’t. The lights above my bed shone far too brightly, and infinitesimal shifts shot pain through my entire body. My abdomen was a cauldron of misery, only two hours past its flayed-open state.
“Do I have a colostomy?” a disembodied voice—mine—croaked. A nurse skirted the perimeter of my bed, checking monitors and tubes that snaked out from either side of my body.
“No,” she said. I had to think about what she meant. My brain, like the rest of me, felt gummed up, and thoughts filtered through in caveman language. No colostomy. Good. The effort of processing the information exhausted me. Unconsciousness returned.
Bi-Coastal Exam Rooms, July-September
In summertime, a small group of white, middle-aged, well-educated men were obsessed with my ass. Not my butt, or the way it fit into a pair of blue jeans, but the inside: my anus on upwards. Before, I’d been an average patient at the research hospital in Seattle, where my time divided itself into thirds: one year of testing to determine that I had Crohn’s disease. One year of tinkering with medication to alleviate my symptoms: tailbone-area pain, blood- and mucous-coated shit, a need to move my bowels more than ten times a day. One year on steroids, which my doctor loved and I hated. A chance conversation with a family friend led me to the office of a medical school classmate of my father’s to seek a second opinion. After repeating some of the tests I’d had done at the research hospital, he called me back to his office.
“I don’t think you have Crohn’s disease,” he said from his position on a stool at one end of the exam room. I shifted in surprise, the exam table paper crackling under my thighs. He thought I had a growth on the outside of my intestine that was pushing through to the inside. He wrote down the name of a surgeon who had operated on his wife. He also recommended that I go see a surgeon at a top hospital in Boston, where I grew up and my parents still lived. The more opinions, he reasoned, the better.
So, my boyfriend Matt and I got on an airplane. We must’ve looked like a normal young couple going on vacation, holding hands as we stared at the clouds at the window, my short frame leaned against his tall one as I tried to sleep sitting up.
In Boston, more scans, more lying on my side to endure the intestinal scope. Part of having a unique set of symptoms meant submitting to the same battery of tests each time I saw a new doctor. Maybe medical establishments were like spy organizations or the Mafia in that way, only trusting the intel that came from inside their own group. My parents came with me to the appointment. My mother wore a fuchsia blouse and her trademark purple Converse high tops. My father’s thick bifocals, usually smudged with fingerprints, had been cleaned for the occasion. How would it feel to accompany your twenty-eight-year-old daughter to the doctor, to look at her and imagine a tumor growing inside her, this person you created, birthed, and raised? The three of us sat shoulder-to-shoulder in the doctor’s fluorescent-lit office as he made his pronouncement, the same as the doctors’ in Seattle: A growth. Not Crohn’s disease.
In the space of two months my lifelong, chronic disease that affects approximately 500,000 Americans became a temporary problem that seemed fixable. The thought of shedding my incurable status thrilled me.
At the research hospital, I’d been just another patient with Crohn’s. With this new diagnosis, I became a once-in-a-career patient. Distinguished surgeons held meetings about me, discussed what kind of growth might be inside of me, and how to get it out. They poured their expertise into my case. I felt like a princess. These were my suitors. One of them would cure me. There would be a happy ending.
Sitting there in the surgeon’s office a few miles from Boston Lying-In Hospital where I was born, though, it all began to sink in: abdominal surgery, with its accompanying pain and fatigue; total reliance on gentle, kind Matt; being completely at the mercy of the doctors. My doctors were the experts and I had to do what I was told without protest: submit to numerous tests, pokes, and prods. I was not a princess; I was a case. I felt fortunate to be in the position I was in, receiving care from some of the best doctors in the country, maybe the world. But in the end, privilege would only buy me so much. I was still a patient. I still had to be cut open.
In the parking garage after the appointment, my parents and I paused by the car while my father fished into his pocket for his keys. He turned to me.
I thought my father, Harvard-educated in English Literature and medicine, would surely have something wise to say.
“Well,” he said, pausing as he searched for the right phrase. And then he found it. “This sucks.”
Colon and Rectal Clinic, August 4, 2 p.m.
Back in Seattle, the first sign that I’d stepped up to a higher level of medical care: the impossibly clear water in the exotic fish tank. I sat in the waiting room and filled out paperwork. There were a handful of other patients, all of them middle-aged or elderly, accompanied by their spouses. The nurse greeted each of them familiarly and brought them back to the exam rooms to wait some more.
After I’d finished my paperwork and watched the fish make a few laps around the tank, it was my turn to follow the nurse around the reception desk to the exam room. Three floor-to-ceiling windows revealed a view of downtown Seattle and Elliott Bay beyond. Puffs of clouds drifted lazily by the window, in no hurry to block the August sunlight. My pulse quickened as the door closed behind me. What was the doctor going to tell me?
A confident knock drew my attention away from the window. In strode a six-and-a-half-foot tall man in a long white coat. He extended a slender-fingered hand, smiled to reveal a set of straight teeth. His eyes met mine to punctuate the well-polished greeting.
He did not sit down. He told me he’d looked at my chart. If he were to perform my surgery, he said, he would do it with another doctor from the same hospital.
“We are the two best colorectal surgeons on the West Coast,” he said, beaming. I don’t know what authority originally made this pronouncement other than himself, but sitting there in the exam room, I was impressed. I felt a surge of flattery. Me, worthy of being operated on by a team of stellar surgeons. He opened the door and stepped aside to let me walk through first.
“Let’s take a look at your films.”
Campus Financial Services, September
I had insurance. Good insurance. I’d just completed my first quarter of graduate school at the University of Washington. As a full-time student pursuing a master’s degree in library and information science, I could enroll in the generous student plan. The low-cost insurance covered eighty percent of expenses until a certain cap, at which point it covered 100 percent. I would reach the cap in my first hour of surgery.
But a problem arose. Because the coverage started with the fall quarter, the university had a rule that a student needed to be enrolled in at least one class in order to be eligible for the insurance. My surgery was scheduled for October, less than a month into the fall quarter. I wouldn’t be able to attend class for several weeks following the surgery, maybe even months. How could I enroll in school if I couldn’t go?
“It’s kind of ironic, isn’t it?” the woman at the student insurance office said.
She suggested that I sign up for an independent study. I connected with a librarian I’d done some volunteer tutoring with the previous year, and made a plan to assist her in creating curriculum guides to accompany library kits for preschoolers. I would do research on child development and write a paper.
I went to the downtown library to meet with the librarian. I sat in a hard plastic chair in her cramped office while she piled picture books and documents into a cardboard box. The sun was bright behind the opaque window at my back, glinting off the shiny covers of Bats at the Beach and Lemonade Sun. After my surgery, I would only be allowed to carry objects that were less than ten pounds. It was strange to think that, in a few weeks, I’d be unable to lift the box she was now filling. Her supervisor came into the office to ask her a question, and introduced himself to me.
“Good luck with your knee surgery,” he said brightly as he turned to leave. I thought the librarian must have told him that I’d be having an operation and he assumed the more common procedure of a healthy twenty-something.
“It’s not knee surgery,” I said. “It’s intestinal surgery.” My smile went a little too wide as I overemphasized intestinal.
“Oh,” he said, and his own smile collapsed.
I was grateful for the insurance, though it pissed me off to have to jump through hoops to get it. My family could have afforded to pay out-of-pocket for the whole thing. I’d like to say that I felt lucky to be able to afford the surgery, just as I was fortunate to be able to see top-in-their field specialists, but I wasn’t happy. According to census data, I learned years later, 38.4 million Americans had no health insurance in 1999, the year of my surgery. If I’d been in a different financial position, I probably wouldn’t have been able to go get that second opinion. Maybe the growth would have eventually gotten bigger and I would have had the surgery. But I would have had to wait for it to become more emergent. Maybe all those years later I’d still think I had Crohn’s. Maybe I’d be dead.
Back then, though, I wasn’t thinking about the bullshit that is our country’s health care system. I was focused inward: my body, my surgery, my miracle cure. I awoke each day with a purpose: attend pre-op appointment; buy a stack of trashy magazines; book a hotel room for my parents, who were coming to Seattle for the surgery and recovery effort. The daylight faded noticeably earlier each afternoon as I drove around town, the light slanting between tree branches as the leaves changed into their fall attire of yellow, orange, red. I was unaware of the way in which time was about to slow down for me. Soon I’d be watching the season unfurl slowly as I looked out my living room window or went for slow walks in my neighborhood, my stitched-up body bent forward as though held together at my navel.
Surgical Center, October 18, 1 p.m.
I sat in bed in a curtained-off room, trying to cry quietly so that the other patients wouldn’t hear me. Matt and my parents were crowded in with me, trying to comfort me. I wore a hospital gown and compression stockings to help prevent blood clots. My IV port was in my arm, but the IV itself had not been hooked up yet. The ostomy nurse had just left after using a black permanent marker to draw two circles on either side of my navel. These were the places where the surgeon would make the cut for the ostomy. If things went well, they’d be able to remove the entire growth without removing my anus. They would cut my ileum, the place where my small and large intestine met. I would have a temporary ileostomy while my colon healed, and then another surgery four months later to hook the whole intestine back together and close the ileostomy. If, however, things weren’t as they’d hoped, I’d wake up with a permanent colostomy. There were worse scenarios: they weren’t sure that they’d be able to get the growth out at all, and, while they thought it was benign, it could turn out to be cancerous.
These things were bad enough to cry about, but they weren’t what had triggered the crying. The tears came when the nurse told me that I would be in a double room even though I’d requested a private room. I couldn’t imagine sharing space with a stranger after a major surgery. Would I have to muster the energy to make small talk? Would my roommate watch the ostomy instructional video along with me? I waited until the nurse left before I began crying, but now I couldn’t stop. One of my surgeons poked his head through the curtain. He gave me a sympathetic look.
“We’re going to take good care of you, Janet,” he said. “Get you all fixed up.”
My father told him of the rooming situation, and he nodded.
“Let me see what I can do,” he said, and ducked back behind the curtain. He returned a few minutes later. “I switched you with one of my patients who’s having surgery after you. He won’t mind. Besides, your Dad’s a VIP.” I felt a brief beat of guilt, followed immediately by relief. Then the nurse returned and my heart jumped back into my throat.
It was time to go upstairs.
Colon and Rectal Clinic, August 4, 2:15 p.m.
The films from my CAT scan sat in a large envelope tucked under the doctor’s arm. The film reader was located across the hall. We wound our way across the plush carpet to the other side of the U-shaped hallway.
The reader was not in another room, as my TV hospital drama-fed mind had assumed, but actually in the hallway itself. The fish tank sat on the other side of the wall, entertaining another set of waiting patients. He slid the films out of their sleeve and into their slots in one fluid movement. He flipped a switch and the reader lit up, exposing my lower half: pelvic bones, coccyx, abdomen, colon. He pointed to a golf-ball-sized white area, near the bottom of my spine. Radiologists at the research hospital had identified this as an abscess, a common complication of Crohn’s.
“Here’s where your problem is,” he said, tapping the film with his index finger. He did not think it was an abscess. He thought it was a growth, he said, probably a benign one, but one that needed to come out. Perhaps it was his lanky figure evoking thoughts of high school athletics, but in the hallway I began to feel not so much like a patient as a member of a basketball team standing in front of the chalkboard while Coach outlined the plan for Saturday’s game. Looking at my own films, it wasn’t hard to separate my mind from my body, floating above the conversation as though this were someone else’s surgery we discussed. I smacked back down to earth, though, when he said, “you’re probably looking at a permanent colostomy.”
“What?” was all I could manage.
“We’d take out your rectum, your anus,” he was saying. “It’s hard to tell for sure where this mass is until we open you up,” he said. “But it looks too low to me to be able to give you any function in your colon.” He went on to explain that, if things were better than he expected, he would just remove my rectum and use part of my upper colon to form a new one. “It’s called a j-pouch,” he said. He was talking fast, like a car salesman. It was too much information to process. I wanted to leave my body again, to float through the walls and outside into the sunshine, away from this corridor of bad news. But I was rooted to the carpet, my eyes locked on my film, the white mass. I could feel it inside me, like someone’s thumb pressing into my tailbone as if it were a piece of clay they were trying to sculpt into a wine goblet or a vase.
A door opened beside us and another doctor emerged from his office. I hoped that my doctor would take down the films, suggest we continue the conversation back in the exam room. Instead, he greeted the other doctor, who stopped on his way to the front desk. I thought he might look at my scan, deliver his own opinion before passing them around the lobby for general comments. But he seemed to take no notice of them, or even of me. He looked up at the ceiling above their heads.
“That light bulb has been burned out for a long time,” he said.
“You’re right,” my doctor said. The two men stood there, heads tilted back, trying to puzzle it out.
“Let the girls know,” my doctor suggested, and the other doctor nodded before continuing down the hall. I assumed he meant the two women dressed in nursing scrubs who sat at the front desk. I imagined that, in an office this small, these women functioned as both medical assistants and receptionists.
“We are the two best colorectal surgeons on the West Coast,” he’d said. A hierarchy existed, I understood now, an elitism. The girls, he’d called the women who ran the office. If they were girls, what was I? I was twenty-eight, hardly a girl but younger than anyone who worked there. Too young, maybe, or too shy, to assert myself right then, to say I don’t care if you’re the best colorectal surgeon in the world, no fucking way are you giving me a colostomy.
Surgical Center, October 18, 3 p.m.
The instant the liquid entered my IV, I felt a wave of calm wash over me. Everything would be fine. They would fix me right up. Matt kissed me goodbye, and the nurse wheeled me into the operating room. It didn’t match the vision I’d formed from years of watching medical dramas. This operating room was small and very cold. Bowls of surgical instruments lined the shelves on one wall. Only the lights were as they appeared on TV: round stainless steel fixtures ringed with bright, circular bulbs hung from the ceiling and a few wheeled stands at the edges of the room. Two nurses helped me onto the table. Bob Dylan played softly in the background. One surgeon was there, along with a resident and the anesthesiologist.
“This reminds me of college,” I said. I meant that the combination of the sedative and the lyrics to “Don’t Think Twice, It’s Alright” coming from a portable stereo I couldn’t see reminded me of getting high on tapestried couches in over-warm dorm rooms. But that was way too much to form into words.
“Where did you go to college?” the surgeon asked.
“Colorado,” I said.
“Beautiful mountains there,” he said. I wanted to agree, to talk about mountains I’d hiked in Colorado, the ones I hoped to climb in Washington once I’d recovered. I wanted to tell him that maybe now I’d get a second chance at young adulthood. Maybe I’d be able to do things in their proper sequence and save the sick bed for old age. But in my near-unconscious state I couldn’t connect thoughts to words; I could only smile. Someone placed a mask over my face. I coughed.
The harmonica cut out. Dylan, his voice a whisper, called me babe and told me over and over that it was all right. Guitar notes faded as he retreated down the dark side of the road.