The Waiting Room

Many say they hate the smell: disinfectant, piss—death on its way in and out, maybe. I logically understand why people dislike hospitals, the places where so many things go wrong, but I’ve never felt that way. For me, familiarity hasn’t bred contempt. When my mother was 12, her mother was diagnosed with a brain tumour. Neurosurgery in the 1960s at the Royal Victoria Hospital’s Montreal Neurological Institute left my baba a changed person. Her reduced motor skills left my mother and her siblings with a slew of new household responsibilities. In 1992, when I was five years old, baba was diagnosed with another brain tumour, inoperable this time, and she was taken back to the affectionately nicknamed Royal Vic.

Completed in 1893, the hospital’s facilities now stand empty at the top of Pine Avenue overlooking McGill University, inhabited only by its 122 years of experiments, incisions and ghosts. For a year after moving to a more modern campus in 2015, the hospital organization kept its reproductive centre at the old site—and nothing else. I pictured couples hoping to conceive wandering the stone building’s echoing halls, reminiscent of a gothic revival castle. I imagined women alone in the turrets, staring out, empty and waiting. In 2020, the vacant space became an isolation unit for homeless people infected with COVID-19.

My first memory of the Royal Vic was the small plastic red chair in the waiting room of the neurology ward as I tried to stay within the lines of my Beauty and the Beast colouring book. When we went into the room to see my baba as she drifted in and out of consciousness. According to my mother, one of my brothers stood there stoically while the other turned green and left; I sat on the bed. I told baba it was rude to be sleeping, since I’d come a long way to see her; had brought drawings to show her and wanted to tell her stories. That’s allegedly when she opened her eyes. I mostly remember colouring in Belle’s yellow princess gown, surrounded by inanimate objects coming to life as she danced with the Beast. Baba was given a month to live and ended up surviving for a year and a half. During that time, I often traveled to the city with my mother from our house surrounded by forest an hour and a half away. I loved watching freight ships on the St. Lawrence as we crossed the Champlain Bridge and drove up the hill to the castle full of people in scrubs I thought were pyjamas, and machines beeping to life. I made friends with the nurses, I got excited for cafeteria pudding, I was thrilled to sit in the corner of baba’s room with my books. The hospital turned 100 as I explored its buzzing halls, and I was just settling in.

After baba died, I didn’t go back to the Royal Vic until 2003, when I got my first colonoscopy. Geneticists confirmed my oldest brother and I had inherited a genetic mutation from my father called familial adenomatous polyposis, or FAP. The glitch on my tumour-repressing gene made cancerous polyps grow rampant in my grandfather’s colon. The disease eventually killed him, though for a long time he was shaded by the catch-all umbrella of indigestion. The term reminds me of the 18th century’s humours, personified bile and blood and other ghostly figures. They helped people humanize the maladies that lurked in their bodies.

When he complained about digestive issues in his late 20s, my mother pushed my father to get a colonoscopy, only to discover his large intestine was lined with his own pre-cancerous carpet of polyps. She was a step ahead of genetic testing and many steps ahead of her in-laws, who denied there was something wrong with their DNA. Though the idea of getting tested to identify genetic diseases is commonplace now, it hadn’t been possible for too long when they drew my blood—scientists had isolated the gene responsible for FAP just 14 years earlier.

Twenty years ago, on the morning of my first procedure of many to come—24 hours after ingesting a powerful laxative with a haunting flavour and texture akin to salty, viscous dish water—my mother put my hair in two braids. I looked even younger than my 15 years as I sat, nervous, on the hard plastic chairs in the waiting room. My body was empty, a state I’ve come to appreciate, like a laxative-induced monkhood. I wore two hospital gowns, one front and one back to keep my behind covered, ankles shyly crossed, surrounded by people with gray hair wearing their own overlapping gowns. They gave me looks full of pity, tinged with fear, perhaps. I must have reminded them of their granddaughters. That fear lived somewhere deep in me, too. Before getting a preventive full colectomy, during which a surgeon removed my colon and connected my small intestine to my rectum, I dreaded they’d find ripe polyps lurking in the depth of my guts.

Illness, whether far off and abstract or concrete as a cancerous mass, is helmed by uncertainty, and the screening’s markers have become the constant. My princess hospital gown accessorized with plastic bracelets bearing my name and cipro allergy morph me into a patient. The procedures that connect the years like a thread have told me many of my body’s secrets—I know which veins are easiest for the nurse’s needle to find. I like the moment when the back of my throat tastes like the ocean after they rinse out the IV line with a saline solution. And I really enjoy opioids.

People laugh nervously as I tell them how good it feels when fentanyl floods my bloodstream, that I understand its addicts because sometimes, for just the length of a breath, everything is alright. When the nurse pulls the flannel blanket up to my chin just before the gastroscopy, my limbs relax in anticipation, knowing numbness is near. I cherish the moments when I’m unable to speak after they put a plastic gag in my mouth, so I don’t bite down on the camera’s tube that will make its way to the pit of my stomach. I let excitement spread through my chest when I hear my gastroenterologist and nurse talk milligrams, when the latter asks for the IV line. The medication creeps up my arm, suffuses me. I’m drunk without the spins, drifting inwards. I sink into the flannel, disconnect from skin, muscles, fat, nerves, blood vessels, organs, mucus membranes—my favourite of the constants.

As a teenager with a colon, I got chatty when they gave me Demerol, which was then still the drug of choice to induce sinking. I once showed the doctor my navel piercing, which I had to remove for the laparoscopic surgery when I was 18. The surgeon’s few-inch incision sliced through the emptiness left behind by my departed belly button ring, to pull out my large intestine. The scar healed the gap within a gap as best it could, leaving a mark above my navel like the dot on an i.

While I recovered from the colectomy at the Montreal General, it seemed hard for my father to see me lying in a hospital bed, pale, weak and there because of our shared genes—he brought me magazines, talked more than usual and didn’t stay long. My mother slept on the floor and her brother came to see me nearly every day. He’d had surgery at Saint-Mary’s Hospital the year before and got a colostomy bag. He had a rectal tumour the size of a grapefruit, my mother said. I appreciated the human scale. I pictured the citrus as if it had fallen from a grove growing inside him.

My uncle was later treated at the Jewish General and, between the two of us, we had a strong pool of the city’s health care institutions, collected like baseball cards. He was amazed at the speed of my recovery and minimally invasive surgery, tinging my gratitude with guilt. I sometimes remember his post-surgery crush on Dilaudid, as I savour my fentanyl sinking and watch my insides fill the faraway screen. It’s like a scene from a medical drama when a small metal claw protracts to rip out fleshy pieces of the tiny masses that grow in my stomach, the polyps that blemish my smooth, pink mucus membrane.

My father died in 2017, leaving the mutation on my genes as our permanent connection. It was a different type of cancer that killed him, though. He was angry that, during decades screening every nook and cranny of his gastrointestinal tract, a tumour grew big as a fist just around the corner in his liver. When he was in chemo, my doctor found I have low-grade dysplasia, the very first abnormal cell activity that, left unchecked for years, becomes cancerous. When he asked if it made me nervous, I heard a subtle tremor in my father’s voice, like a worried echo coming from years later when he wouldn’t be around to ask. I brushed off his concern, ready with the script I use when people’s eyes go wide after learning I don’t have a colon. My mouth talks about luck, my nearly unchanged life, the resilience of the human body. I could spin plates to prove just how fine I am.

For many people with genetic disorders, the illness is a question of when rather than if. We live sitting in the waiting room, expecting life-altering news to fill a space left empty by diagnosis. As with most things medical, there’s a term for us: previvors. My father died a previvor. I’ve often wondered if the silver that streaks my dark hair is from the same gene that caused my older brothers to go prematurely grey, or if it’s from spinning those plates. My mouth continues to thank the universal health care system from which I’ve received thousands of dollars’ worth of testing, screening and surgery. But as I wait, I wonder if focusing on FAP shades a cool blind spot big enough for another cancer to grow.

There was no waiting room in the palliative care centre where my father died for three days. Instead, there was a living room with couches, lamps on side tables and pastel landscape paintings. It had a white grand piano that my husband sat at as we waited, playing a soft melody he would perform at the funeral a week later. I’m glad that those moments, so crushing I had to remind myself to breathe, happened in a place that tries to simulate home and inevitably falls short. It leaves them in an interstitial space drenched with my cortisol, as my uncomfortable, neon-lit hospital waiting room at the new Royal Vic stays well-defined. My brain’s amygdala can rest easy as I wait for nurses to call my name for the rest of my life.

There is no cure for my disease, only monitoring. Once a year, my doctor takes out problematic cells piece by piece as they grow and cluster to the size of flax seeds. With the years, I’ve started to blend in more in the waiting room. The people there for procedures that become routine after middle age look more like my parents than my grandparents. My hair, which has become streaked with silver strands, now hangs in a single braid. As I read my book on a plastic chair, I hope one day to be the woman with completely grey hair whose heart squeezes at the sight of an out-of-place teenager, eyes wide and ankles awkwardly crossed. If our gazes should meet, I hope to give her a supportive smile, sadness turning the corner of my lips. I hope to see that girl one day. To wait with her, for a time. Because if I’m not in the waiting room, then I’m nowhere.