The Hour of Lead
The day I was diagnosed was a day of ecstatic relief.
Something is broken inside of me. Whether it be a sinister bend in the double helix of my DNA, or a less traceable mutation on the cellular level, my body’s intentions have gone crooked. When I was younger, my older brother used to give me what he called an “Indian burn,” which involved grabbing my forearm tightly with two hands, and then twisting his palms in opposite directions, again and again, until my skin chafed and turned red. The consistent pain I deal with feels as if some spectral enemy, diving his hands deep into layers of flesh, is giving my intestines an “Indian burn.” At the best of times, it’s barely noticeable—just a tremor on the baseline of neural stimuli. When it grips me in its vise, I’m unable to stand without a tearing sensation in my guts. I’ve spent a lot of my life in bathroom stalls bent halfway over, clutching at a digestive tract that seems to be in revolt, as if it’s looking to escape my abdomen and spill onto the floor.
In April 2013, my disorder reached its most shrieking pitch. In the middle of a post-graduation move, from Ottawa’s suburban Glebe Center to its southern Annex, I was suddenly blinded by exhaustion after having carried some furniture across the yard. Wobbling back into the house I was supposed to be vacating, I collapsed on my bed and woke up later, in the middle of the night, spitting a gummy, green bile. I struggled my way to the new house, using a forgotten office chair as a crutch, and leaning on it, defeated, when I felt I would black out from fatigue. When I got there, I lay almost unconscious on a basement couch. Food marooned on the dam of a nauseous wall at the back of my throat. I’d chew spinach leaves into a pulp before spitting the mashed ball out in defeat, fearing the retch that welcomed any attempt at swallowing. This went on for several weeks before I gave in to the demands of my roommates, who pleaded with me to get some help. My friend Jack looked concerned as he called for the ambulance. Even as he took comfort from the fact that the paramedics were on their way, he must have known that when they came their unfeeling prognostics would come with them. And that arrival would destroy any space left for hoping that this was just a flu blown out to monstrous proportions.
In the ER, whenever my vision sharpened out of the morass of a continuous blackout, doctors bearing clipboards and no patience asked me pressing questions.
“Do you take recreational drugs?”
“Have you engaged in homosexual sex?”
The limp nos I offered seemed to grate on them, as if I were inhibiting my own recovery by not copping to the diseases they suspected of me. I could tell that the senior medical personnel were growing impatient with my inability to give them an easy answer. Fundamental as it is to the universal healthcare that Canada offers, the efficiency of the ER depends on a measured unwillingness to wade into the subtleties of diagnosis. While I was in their care, I was taking their attention away from equally deserving patients. I was in pain and, with hindsight, I can say that my life was in danger, but that was true of almost everyone I encountered in the hospital. For this whole broken, hulking medical machine to function, anyone clogging up the system with potentially false information has to be looked on with a bit of disdain.
The problem with my illness is that it doesn’t show. I don’t send the right emergency signals that get people rushing to their Hazmat suits. Having been skinny since I was born, growing gaunt hardly seems like a drastic shift. And over the years I could camouflage the physical symptoms by claiming it was nothing more than over-exertion or lack of sleep.
But now, after weeks of not eating, I had dropped thirty pounds. My cheekbones jutted like spearheads on either side of my face, causing the skin to tighten around my head until the skull rose up to the surface. Confronted with my scary features, the doctors were determined to get me to say “Yes” to these basic questions: Yes, I’m a junkie, or Yes, I’m a promiscuous gay man, with “HIV-positive” playing like an overture on the xylophone of my exposed rib cage.
“Listen, if you don’t tell us the truth we’re going to have to send you home.” The senior physician in charge of my case sat beside me, dressed in his best bedside manner. He had bags under his eyes like canned prunes, and sagging, scruff-ridden jowls. “We’re not here to judge.”
Uneasiness about the validity of my disorder has existed as far back as I can recall. As a teenager, I had near-continuous constipation and abdominal pains, but when I waddled with my cement mixer of a stomach to a doctor’s office, they would condescendingly explain proper diet to me. I remember one old graying eminence, lost in some reverie straight out of an ancient anatomical textbook, telling me that, in Africa, men squat down and feces coils out of them as smooth as Play-Doh because “they only ever eat fibers.”
As a child, I desperately wanted to believe that I was just like everyone else. I internalized the idea that my circumstances were not exceptional. The apathetic response I received from medical professionals told me that nothing was wrong. I thought that most other people must feel the same twist and tightening in their guts. If I was unique then, it was only in my failure to rise up to the responsibility of body ownership. I accepted that this was all in my head, that I was only handicapped by my capacity to improvise a hypochondriac’s vast lexicon of complaints. If I had somehow engineered this whole elaborate system of bodily dysfunction, then it was in my power to break it down, pull it apart, and be free of it. The question of “what’s wrong with me?” took on the false disposition of interrogating not my body, but my mind. It became an internal battle with myself, and, without a name to call it, I couldn’t communicate this struggle to my friends or family. My tendency to lock myself away for days, weeks, or months at a time seemed a sign of my indifference to them, rather than what it truly was: a misguided attempt to quarantine this disaster into the smallest circle of impact possible. I didn’t know what I could do for myself, but I could keep others safe by not pulling them into the savage dogfight that was playing out inside of me.
“Listen, if you don’t tell us the truth we’re going to have to send you home.”
Although pain is the most solitary experience imaginable, it is also policed socially. We celebrate the stoic who endures their torture with equanimity, and deride the whiner that takes any opportunity available to soak up sympathy. We distinguish different species of suffering, and the emotional responses that they each deserve. What determines rank in the afflictive circus is not the testimony of the victim, but the visuals that they are capable of providing. The burden of proof is on the performance of pain.
Imagery is key here. We respect the dangers that we can realistically envision befalling us. If there is nothing to say, we place the judgment of where empathy is due almost wholly on the medical community. Hard to imagine what it’s like to have cancer, or to undergo the nauseating excavation of chemo, and yet we know its terror—it has status. Visibility attaches itself to familiar narratives. To be refused the stamp of approval that comes with diagnosis is to be outside of empathetic boundaries. It is not only your pain that is discredited; it is also your voice. Weighted against you is a whole institutional behemoth meant to classify and grade different styles of anguish. What is the ER but a queue where the quickest way to the front of the line is approved despair? The real question, then, is: Must you suffer better to suffer true?
Still in the ER, I felt muted and fixed in place, unable to answer the man who was meant to decide whether or not I would stay. “Kid, just be honest.” Lucky for me, someone else was there to interject, a bespectacled doctor with a shaved head who, judging by the fact that his smocks looked two sizes too large on him, may have been a student. More fresh-faced and wide-eyed than the grizzled vet in charge, this boyish MD seemed to still harbor some youthful belief that even when cornered by circumstances, the answer was bound to come to any medical warrior willing to throw themselves relentless at the problem.
“Maybe we should try a CT scan,” he offered, adjusting the position of his glasses on the bridge of his nose.
Unwilling to budge, but prodded by the unimpeachable logic of the suggestion, the senior physician responded tersely, “Okay, but if that doesn’t show us anything he has to go.”
Medical machinery is meant to inspire awe. The sonic thunder and plunk of magnetic fields in flow make the device sound like the hollow resonance of steam engines from the eighteenth century. You get the sense that the technicians could muffle that caroming gear-munch if they really wanted to, but that would be at cross-purposes with their design. The louder they are, the more arcane the knowledge they are capable of producing; the bigger the boom, the more authoritative the answers they provide. The results feel like a kind of mysticism. Inner workings of the body are lit up as though you’d swallowed stars. The images shown to me were more like a set of fatalistic Tarot cards: stains of ominous Falu red and garish Citrine yellow, clawing across the curled meat of my intestines.
“You have highly aggressive Crohn’s disease.”
I felt the boil of tears rising up to my eyelids. I was flushed with relief. It was real—it had a name and a WebMD page. I hadn’t invented any of it—not the pain, not the discomfort, or the sense of estranging otherness. The doctors didn’t know how to fight it, but I didn’t care. I knew I could survive; I had been doing so for years. What mattered to me was that they had finally let me into the club. Pain is pointless. It never has a purpose; it doesn’t build character; it never makes you stronger, or more resilient, or better able to tolerate greater degrees of pain in the future. It is devoid of content, and often unspeakable. But to have a proper witness to your pain, to have someone other than yourself register your struggle as a reality, not a case of you misunderstanding the signals your own body lets off: that is an immeasurably enriching experience.
I was so ecstatic, so thankful, that I hardly recognized the upcoming difficulty of treatment. I had stumbled into an age-old battle between immovable forces. Medicine and Surgery are two departments, two disciplines, two ideological worldviews that are meant to work in tandem, but instead are constantly butting heads over the proper path to treat a patient. In contrast with most power struggles in human history, what they bicker over is the privilege to not act, to not decide.
Those with prescription pads asserted that I had to be cut open, while those gripping scalpels hid their weapons behind their backs, contending that there must be some experimental drug or stem cell wizardry we might try. Meanwhile, my condition worsened, the pain dulled only by multiple daily doses of Dilaudid, heroin’s little brother branch on the family tree of narcotics. I was fed by bags of amber-colored TPN, an intravenous nutrition system that had me tied to a pump on a pole, which rolled beside me on walks and had a grocery cart’s tendency for making its fourth wheel go askew.
In a dark back room no doubt filled with cigar smoke, unusual plans involving my treatment were hatched. I was to be released from the hospital—with the full knowledge that my health would deteriorate and cause an abrupt U-turn back to the ER. Once I was readmitted, the surgeons were legally obligated to operate if a patient arrived in critical condition. It was a strange Trojan horse of a plan that I respected for its boldness. Unfortunately it all fell through when I caught a flight headed east to New Brunswick, where my parents lived. In the city of Saint John, I fell back into my sickly ways; there, it was the duty of the local physicians to pick up the pieces of the complex drama of my survival.
Enter my savior: a ponytailed doctor of diminutive height with David Copperfield’s strained sense of showmanship. He would bluster into rooms, clapping his hands together to announce his arrival: “Marcus, Marcus, Marcus, you still here? Let’s see what we can do about that.” He was immediately willing to get wrist-deep into my squishy bits, and was dissuaded only by the fact that he was not, in fact, a colorectal surgeon. My allergy to contrast dye meant that it was impossible to give me an MRI scan. A surgeon would have to go into the operation “blind,” ignorant of the severity of my case until I was cut open.
Not easily discouraged, the ponytail doctor decided that he would give his operating room time to a more specialized surgeon from Fredericton, the capital of New Brunswick, who would drive down just long enough to sneak in and do the possibly illegal—certainly very frowned upon—deed before burning hot rubber out of there. The ponytail doctor would, I dunno, go grab a sandwich, take a smoke break and, in general, look the other way. But he kept a protective eye on me until they rolled my hospital bed into the operating room. Taking it as his responsibility, the ponytail doctor gave me the rundown of the surgery’s possible results:
“We know that the disease has torn fistulas in your digestive track. And broken down your bladder. In order to repair that, we will be forced to work around the genitalia, which may result in impotence. Then we’ll remove any length of the intestines that is too damaged by the Crohn’s. This could be small, or it could be large. There is a range of consequences that might occur because of this. It could be that you’re given a colostomy bag, temporarily or for a more extended period of time, and if the case is sufficiently severe, you might have to remain in the hospital permanently, receiving intravenous nutrition.”
It may be shallow, but I was only praying that I wouldn’t be rigged up with the colostomy bag post-surgery. The disease had already robbed me of so much dignity, and my one defense, however self-destructive on my part, had always been that these horrors were private. To have them externalized with the crinkle and sheen of plastic seemed unbearable. As the anesthesiologist introduced himself “Are you ready, soldier?” while covertly introducing the analgesic into my bloodstream, my consciousness faded like a vapor trail and I was crowded over with shadows. The last thing I felt was the fear.
I woke up split down the center like an avocado. They had removed my large intestine and attached a colostomy bag to my side, where it would stay for three months. My body shook and trembled, so irreparably abused that it didn’t seem to trust me to care for it anymore. Hit with the aftershocks of intense pain, a large portion of your mind ricochets out of the muscles and the joints, like a pilot ejecting into the air to escape her crashing plane. A part of you looks down from some higher perspective as your prostrate and pinned body writhes on the bed. It’s a survival mechanism—too much agony and the mind cordons itself off in shock.
Then it’s over. I had spent from May-November of 2013 in the hospital—one month in Ottawa, the rest in New Brunswick, with the occasional trip to my parents’ house on what the hospital referred to as a “day pass.” After two weeks of grueling physical therapy, they let me go home. As I stepped outside of the building, I felt my chest constrict. The light seemed too bright, the people too alive. Anyone who has had their placid illusion of bodily control disturbed might agree that what comes next is the hardest part: you must leave it all behind. “This is the Hour of Lead,” writes Emily Dickinson, “Remembered, if outlived, / As Freezing persons, recollect the Snow — / First — Chill — then Stupor — then the letting go.”
Often, when I’m speaking with someone, warring impulses will bubble up in my mind. Part of me is rabid to tell, to press on them the severity of my experience. And the other part is the terror that even if they could grasp the frayed nerve ends, twisted muscle fibers, and inflamed organs that kept me locked inside a physical cage, the result would be disastrous: they would name me by the chains I wear. I would become my sickness. I’ve cycled through these events over and over again, hoping by way of repetition and reenactment to sooth it into narrative, to draw effect and cause, to lay a claim on chaos and make it seem tamable. The smallest things pull me back into that hospital bed: the way light spills through curtain ruffles on certain mornings, throwing an antiseptic glow onto the floor; a trilling beep that seems to strike the same tone as the digital paraphernalia that decked out my ward.
Memory builds walls only to break them down. It games you into full feeling by allowing you to imagine yourself safe. Only after the guard is dropped will it reveal its hidden dagger: the image or sound that draws a line from dead thought to deadened soul, both bloomed back into agonizing life. Sometimes it shocks me that after so many fretful hours, I still feel so close to it, so enmeshed. It feels as though I escaped a prison, and although I walk around in civilian clothing, I’m only waiting for the right set of authoritative eyes to notice me, grab a hold and say: “Who let you out?”
I’m afraid of what’ll happen if I relax my grip on this story. Without it, I might fall back into a tortuous anonymity, in which I feel like some alien lurching around in a full-body cramp. But worse still would be to keep taking hits off this interminable fountain of self-pity, to become so drunk on my own tragedy, that I fail to see the sadness in others. Convinced of my own illegibility, I have shaken off the attempts people have made to compare their experience to mine. Medical workers, religious officials, family and friends: they all encouraged me to reach out to others in similar circumstances. I refused, and I have made myself more alone because of it. I’ve been negligent of the fact that to give attention to the pain of others is a healing process in itself.
I spent a lot of time, while I was still waiting for surgery, reading in an open area on the first floor of the hospital, with nothing to distinguish its broad expanse but a couple of benches lining the edges. Sometimes groups of kids would wander past me on their way to play in a big concave pit, where staff often hosted crafts fairs or pharmaceutical conventions during the weekends. Once, two little boys with more freckles than face to put them on, and a girl with sandy brown hair that hooked around her jawline, came by and started talking to me. I hid my copy of Tyrant Banderas with its jacket cover art of Morimura’s “Exchange of Devouring,” a painting in which Saturn devours his son in graphic detail. The boys asked if I had any scars, and I said, “Not yet.” They asked me what I was reading about, and I made up some story I’d pulled out of the sky. All the while, the girl just kept staring at my IV pole. She had one too, in smaller form. Free of those trappings, the boys started messing around with action figures or Lego pieces. When the boys were far enough away, the girl rolled a little closer to me and said, “It’s okay to have a pole. It doesn’t mean you’re gonna die. It just makes you stronger.” By telling others that it’ll be okay, you tell yourself it’ll be okay.
More in this series
An “energizer bunny” who spent weekends hiking, she now battles chronic pain and fatigue.