All week I had been reading White-Jacket, Herman Melville’s novel of the man-of-war Neversink. The book mercifully absorbed me. Melville’s incessant detail helped me forget how sick I was, and after I drank the Suprep it helped distract me from my emptying. Until the morning of the colonoscopy, when a sailor, denied leave, tried to flee the ship and was shot in the leg by the Neversink’s armed sentry.
After the sailor is hauled to the deck, Surgeon Cuticle, the ship’s head surgeon, examines his wound. Eagerly, he declares that the bullet has gone through the flesh of the sailor’s thigh and run along the bone, making removal of the bullet nearly impossible. Surgeon Cuticle consults Surgeon Bandage, Surgeon Wedge, and Surgeon Sawyer, who have rowed in from other ships docked at Rio de Janeiro. All disagree that amputation is necessary. Only Surgeon Patella, a novice eager to impress Cuticle, circumlocutorily agrees. That decides it: Tomorrow at ten o’clock, Surgeon Cuticle announces, the sailor will lose his leg.
The amputation scene is a dedicated satire of medicine’s worst tendencies, and Surgeon Cuticle a biting parody of the type of man who clings to them. Cuticle, Melville writes, hungers for war so that he may be more actively employed. He understands his patient more as a diagram than as a human being. Horribly, he contrives an amputation where no amputation is necessary. “Yet,” writes Melville,
you could not say that Cuticle was essentially a cruel-hearted man. His apparent heartlessness must have been of a purely scientific origin. It is not to be imagined even that Cuticle would have harmed a fly, unless he could procure a microscope powerful enough to assist him in experimenting on the minute vitals of the creature.
Medical practice has made Cuticle who he is, Melville suggests. A scientific eye applied to a living being cannot help but treat him as an object.
On the morning of my colonoscopy, I agreed with Herman Melville. I was angry and frightened of the gastroenterologist who would look inside me. I didn’t want to be the sailor, and I didn’t want to be the fly. I didn’t want him to dissect me.
But what choice did I have? I couldn’t tell the gastroenterologist that my first colonoscopy, when I was sixteen, felt like a simple procedure. Only after my diagnosis did I understand how it felt to be classified so easily: You have Crohn’s disease. My diagnosis allowed every doctor I saw to pretend they knew something about me. The more they knew, the less they listened to me.
I could never get across that my body was a whole thing. I couldn’t convince them there was more to me than the tract between my mouth and my asshole. For them, my illness was no more than a wound, like the sailor’s. If medication failed me, the next option would be bowel resection, in which the problematic part of the intestine is simply removed. I was afraid to be treated so narrowly.
At least, as the sailor, I had White-Jacket. As long as I kept reading the book, I had Surgeon Cuticle, a caricature of a doctor, instead of him having me.
On the day of the sailor’s amputation, the surgeons gather on the half-deck. The sailor is placed on the death-board, usually used to bury sailors at sea. The sailor faints twice from fear as Cuticle describes the details of the surgery he is about to endure. When the sailor wakes, Cuticle begins to carve the flesh at his thigh. He is about to saw through the bone when he pauses and asks whether any of the attending surgeons would care to do the honors. “A splendid subject!” Surgeon Cuticle exclaims. A volunteer sets about sawing hesitantly. Soon, Cuticle snatches the saw and assumes the duty himself, less out of humanity than out of jealousy. The leg parts from the body. The sailor, who is only a necessary inconvenience, is taken away.
A discourse on the surgery follows. During Cuticle’s speech, issued in an elevated idiom that contrasts with his bloody hands, he sets a time—ten in the morning tomorrow—for the surgeons to examine the leg. At which point, almost as an afterthought, the steward rushes in from the other side of the deck. He reports that the sailor is dead.
Cuticle does not miss a beat: “The body also, gentlemen, at ten precisely…I predicted that the operation might prove fatal; he was very much run down. Good morning,” he says and departs.
In the waiting room of the endoscopy center, I put the book down. I grimaced at Thirii. Soon I would lie on the gastroenterologist’s table, which at least was not the death-board. The time had come to give myself up to the doctor’s definition of me.
If I had to be classified in order to get well—if I had to become a diagram—I was willing to be classified. As long as I had my story, it felt like something less than surrendering.
When the nurse called my name, she wouldn’t let me bring my book with me. She insisted I wouldn’t have time. I followed her to a curtained enclave off a bright room. Voices drifted from the other side.
She told me her name was Gretchen and asked where I was from. “Ohio,” I said. “Your parents must be conservative,” she remarked, surprising me. I was grateful she’d taken the risk. While she IV’d my arm, we gave our weary lamentations of Republicans and the President. The saline wouldn’t drip, so she extruded the first IV and IV’d the back of my hand. It hurt less than it ever had. As I lay down on the gurney, I decided I trusted her. I told her I hated Western medicine. I was only here because I had tried everything else. She nodded. She said she couldn’t blame me, and I could tell she meant what she said.
Gretchen left when Michelle arrived. She rolled me past the curtain to the operating area. As she closed the door and prepared the imaging equipment, we talked about the low-FODMAP diet, which she had also tried for a while. She avoided gluten like me. She hated to take Advil, to do anything medical. “But sometimes you have to,” she said. I wanted to keep talking to her, but now the fentanyl-midazolam was taking hold. I wanted to stay awake, to be there for everything that would happen to me.
Then the gastroenterologist appeared for the briefest moment, and I was lost to the room.
Caricatures, of course, have their limits. Melville’s parody manages to be both validating (for me) and damning (for doctors), but it never ventures to suggest what a person might do in the face of medicine’s powerful narrative.
This is where, for me, Donna Haraway’s cyborg feminism comes in. Haraway’s approach takes for granted the totalizing power of such narratives, repurposing them into an expansive consideration of what the body can become. Her work found me just when I needed it, as I began to look for answers beyond my resentment of medicine.
In “A Cyborg Manifesto,” a foundational text that has given rise to innumerable responses and elaborations since it was first published in 1985, Haraway suggests a self that cannot be easily described by isolated systems of meaning. Instead of defining a person singularly, as Surgeon Cuticle does to the sailor whose leg he amputates, the cyborg self has room for multiple meaning systems, multiple technologies, and multiple identities. All of these conflict, overlap, fragment, multiply, and shift, resulting in something more capacious than the regulated, definitive self. Through Haraway’s cyborg feminism, that is, it becomes possible to see medicine as one of many overlapping systems for understanding the body, less a limitation than an opportunity.
Three years after her manifesto, Haraway described the immune system as a structure that makes room for such expansive self-understanding. She writes,
The hierarchical body of old has given way to a network-body of truly amazing complexity and specificity. The immune system is everywhere and nowhere. Its specificities are indefinite if not infinite, and they arise randomly; yet these extraordinary variations are the critical means of maintaining individual bodily coherence.
Seen this way, the immune system is itself a cyborg technology. It provides a way out of diagrammatic notions of the body and into more interwoven forms of identity.
This gives a new inflection to the fact that autoimmune disorders, like Crohn’s, often manifest as problems of permeability. They are expansive and unpredictable, never limited to what or where doctors think they should be. What a relief to see this through Haraway: The impossibility of compartmentalizing my Crohn’s could be the precise thing that defines it, a definition that suddenly allows for me.
I wish I had known this from the start. I wish, when I lay in the operating area in my socks and t-shirt and gown, that I had seen myself as a cyborg, not a sailor, who didn’t lose but gained when the doctor hovered over me.
At the beginning of the appointment, when Gretchen made me leave my book behind, I wondered why she did it with so much conviction. I think I know now what she was trying to say. If I had looked close enough, there was room for me inside the white walls, on the thin cushion of the gurney.
My story was not the only story. When I left it behind I saw there could be more to me.
Twilight sleep. In which the patient is placed in a left lateral decubitus position and the scope is passed under direct vision. Throughout the procedure, the patient’s blood pressure, pulse, and oxygen saturations are monitored continuously. The colonoscope is introduced through the anus and advanced to the terminal ileum. Everything is photographed.
Later, when the photographs are provided to the patient, they are arranged along the page like partial visions: rectosigmoid junction, cecum, terminal ileum, transverse colon, rectum, sigmoid colon. They provide a way in, but into what? They show the holes. The flesh surrounds them and laughs.
The first thing I remember is confusion. There was a choice and I was unable to make it. I went back to sleep.
The second thing I remember is shuffling through the parking lot, held up.
The third thing I remember is leaning out the passenger door of the car and vomiting in the parking lot of the burrito shop.
The fourth thing I remember is watching Thirii walk out the door of our apartment. I woke up an hour later face-down on our futon, my feet on the floor, my back twisted into an arch. In front of me was a cold burrito bowl.
Thirii fills in the gaps: She walked into the operating room and saw me lying on my side, emerging from twilight. The doctor and the nurse explained my options to us. I could take an oral steroid or a hydrocortisone enema. I could not understand a word they said. Finally, although I could barely stand, they discharged me.
After our long walk across the parking lot, Thirii put me in the passenger’s seat of the car. She drove to the burrito shop, bought me food, and drove me home. She had to teach a class, so she left for campus.
When she returned, I told her how I had passed out on the couch. She was gutted, filled with remorse. “I shouldn’t have left,” she kept saying.
I told her there was no reason to stay. “I was gone as long as you were,” I said. “All you missed was me climbing back into myself.”
“Either way,” she told me, “I’m glad you got the colonoscopy.”
“I’m glad you made me do it,” I said.
In our cold apartment, I began to come to my senses. I still had my responsibilities, my writing, the plants on the windowsill to mist. I wasn’t hungry that night after the procedure. Either fasting shrunk my stomach, or something new had filled me.
Findings: Segmental moderate inflammation characterized by congestion (edema), erythema, granularity and mucus was found in the rectum and in the distal sigmoid colon extending to 25 centimeters.
An 8 mm inflammatory appearing polyp was found in the rectum. The polyp was sessile. The polyp was removed with a hot snare.
Normal mucosa was found in the descending colon, in the transverse colon, in the ascending colon—and the doctor’s words were so obviously inadequate that they could only fail to describe me.
The findings only confirmed everything that was not the findings. I went in as a patient and came out as who I am.
The day after the colonoscopy, I felt weak and fatigued. At the same time, an unfamiliar energy animated me. I taught all morning and returned home to crash in bed. When I woke, I had received a text from my sister. She was going to run the Los Angeles Marathon, her first marathon. Would I run it with her?
I looked up the race: 25,000 people. One of the largest marathons in the United States. It was four months away. My lips and fingers pounded with warmth. My blood leapt through me like I was at the starting line.
I told my sister yes, pending recovery as expected. I said it even less hesitantly in my head: No matter what, I would run that marathon.
That night, I took the hydrocortisone that the colonoscopy had allowed the doctor to prescribe. My eyes whipped open at two AM. I was full of heat, frantic in the darkness. My body was turning on again.
I kept taking the hydrocortisone. Within a few days, I was able to digest everything. My inflammation decreased, I became fiery. It was hard to distinguish between the drug and my optimism. Both burned in me.
On the fourth day of the hydrocortisone, I went on my first run in weeks. I intended three miles but ran eight. The weather had cooled and my legs felt like they were made to move. In the park south of our apartment, the geese had fled.
But I hadn’t. I churned around the gravel curves and passed the public bathroom without even a thought of using it. I was in my skin. My feet barely touched the ground.
In a recent essay in Triple Colony, Carolyn Lazard argues against relying on a single narrative to think about the sick body. As a patient, Lazard writes, it is necessary to seek more than one form of treatment, just as Haraway’s cyborg engages with overlapping identities. In contrast with Haraway’s emphasis on self-definition, however, Lazard’s account highlights an essential point: “Sometimes,” they write, “my body is transparent, exemplary of karma, of action and reaction. Sometimes it is a solid mass of impenetrable, unknowable matter. Whatever it is, I am my body as much as it completely evades me.” The body cannot be known, even as a cyborg. To define yourself, you have to be able to see yourself clearly. “But sometimes,” writes Lazard, “you see things that you can’t feel. Sometimes you feel things that you can’t see.”
Here is what I see:
The gastroenterologist’s photos of my digestive tract are unbearably intimate, and at the same time they contain very little. They are definitive, unmistakable, diagnostic. They have nothing to do with me.
What I feel, on the other hand, cannot be photographed. It cannot be classified or diagnosed. I exceed the words for me.
In the end, I did not run the marathon with my sister. There were a few weeks immediately after the colonoscopy when the hydrocortisone revived me, but by the time I would have begun my long runs, I was as sick as I had ever been. I was hungry, fatigued, and foggy. I barely recognized myself.
A month before the race, my sister decided not to run it either. On her 16-mile training run, an ankle problem had set in. She posted that you had to know when to throw in the towel, that she would try again when she had recovered. I felt better knowing I wasn’t the only one who couldn’t run the marathon.
The day before the race, however, she changed her mind. Although she hadn’t run for three weeks, she picked up her race packet and showed up at the starting line. It was the kind of decision I would have made back when I was strong.
But I had given up my story, which meant that being sick was as much a part of me as anything else was. I tracked my sister’s pace on my phone. She finished, a wonder. I ran eight miles that day, the farthest I could run.
Lazard writes, “My body is a record keeper, an organism of such complexity that I may never fully understand it. I am drawn to this unknowability, an opening to another way.” What if my goal was something apart from knowing? What if I could live in my body without needing to understand?
Watching my sister finish the marathon, I wanted to be a sailor, flickering above the sea on a man-of-war. I wanted to be a cyborg, full of definitions of myself. But here is what I felt instead: I was sick in the pit of my stomach, sick with love and exhaustion and jealousy. Another part of me was in Los Angeles, running. And part of me was still struggling to accept my body, my illness, everything in myself I couldn’t describe.
That acceptance was coming. I didn’t have the words, but for the first time I didn’t need them to hold me.