Vivente

Eleanor Mota

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Few young writers grasp the visceral mundaneness of illness the way Eleanor Mota does in "Vivente". Recounting the story of her father's liver disease and the nuanced ideas of home and family with honesty and care, Mota offers a touching narrative ripe with humour and hope.

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Yolk began as an electric conversation around a picnic table in Saint Henri Square.

Our scruffy pioneer and present prose editor had previously approached each of us with an idea, a vision: We would establish our own literary magazine in Montreal. And so it was, or so it would be. After that original encounter, eight individuals devoted to the word resolved that they would gather bi-weekly, on Sundays, and bring something new into this busy, manic world—something that might slow its spin down somewhat and cause its patronage to say: “You know what, it ain’t so bad, is it, Susan?”

We are undergraduate, graduate, and graduated students of writing. Some of us learn our craft formally from accomplished authors in seminar courses, and some of us learn by looking out the window of the world and onto the streets that sing below. Some of us learn from screaming squirrels, old curtains, departed grandfathers, and bowel movements. We learn from old lovers, long winters, imperfect mothers, and from the deep internet where a musical genius remains entombed.

Yolk is cold floors on Sabbath mornings, home-brewed ginger beer in the endless afternoon, and downpours of French-pressed coffee in assorted artisanal mugs. Our first official gathering was scheduled for a duration of two hours; most of us remained for six, departing only to attend to the summons of our own beckoning realities. Together, with time suspended, we talked endlessly of contributing something to disrupt Montreal’s literary ecosystem. Something unparalleled, something true.

But what? There was nothing to discuss. There was everything to discuss.

We volunteer our time, hounding some elusive beast composed of combustible words and works. We are hopeful, truly hopeful, that we can give something new, a new way, a new light, and that if we cannot, we might at least uphold the traditions of our predecessors, cast star-wide nets to capture their echoes. We are a thousand decisions. We are a sanctuary for the orphaned word, the solitary writer, the cereal-eating artist who yearns for company, for the comfort of a like mind; we sit together with them at foggy dawn, it rains a baptism, with our arms and hands intertwined, we form an umbrella—underneath, they scribble madly, the perfect picture.

Yolk in no way presumes to be superior to its contemporaries, but its contemporaries should not presume yolk to be anything other than loud—quite, quite loud. We are yippidy jazzed to address the oh-so-technicolorful magnificence of the human experience, but we are prepared also to address the ugliness, to stare at its wet, hairy snout and into its square depth and to roar in return at the things that yearn to devour our skin, beset our ethos, and dig graves in our own backyards.

There’s so much to say, there’s so much we don’t know, but together, with you, we can placate that ignorance, render it peaceful, tolerable, and perhaps even, fucking beautiful.

And Susan says, “Amen.”

          It had always been my dad’s responsibility to accompany me to hotel swimming pools as my mother hates chlorine. At check-in, I’d always peek above the counter to ask about the pool. My dad and I would exchange conspiratorial glances while the receptionist rattled off opening hours, already planning the fictional water aerobics instructors we’d impersonate in our endless competition to make each other laugh.

          It’s the first COVID summer, though we don’t know it yet. We’re both too old to play, so my father and I wade through the icy water of the Airbnb’s outdoor pool like proper adults. My parents measure memories in soccer championships, so I’m aware that at this time in a regular year, all of France would have been aglow, a constellation of brasserie televisions screening the Euro Cup.

          L'Isle-sur-la-Sorgue is our fifth or tenth or 15th small French town in a month. My dad intentionally butchers its pronunciation, and we’re laughing as I crane my neck to look at the sky. Unlike the suburbs we call home, void of astrological spectacles, here the nights are dark and clear. I don’t even have to squint to see the stars.

          The stone floor is firm under me as I stand in the water. This is the perfect kind of peace I’d read about in a travel essay and could only ever hope to experience. Dad lays serenely on the surface like a fallen leaf.

          “When I’m gone,” he starts to say.

          “Not now, Dad.”

          He is dying and I don’t know it yet. I’ve told this story many times and he always hates it when I phrase it like that. He calls it dramatic. I call it inevitable.

                                                  * * *

          If you’ve never been in the unfortunate position of telling people your dad needs a liver transplant, you wouldn’t know that the reaction is almost always the same. Your audience winces and sucks the air in through their teeth, pouting, and talks to you like they would a child.

          “Was it alcohol?” they inevitably ask, voices steeped in condescending pity.               

          “No,” you sigh. “It’s a rare chronic condition. No one knows why it happens.”

          People generally understand that taking an organ out of a carefully crafted ecosystem of veins, tissue, and blood never means anything good. But it’s rare that they truly understand why. I, too, was once ignorant of the fact that the body holds the liver accountable for over 500 vital functions. Among these include the production of bile, the processing of hemoglobin for iron, and the clearing of poisonous substances. In layman’s terms, the liver is instrumental to the smooth functioning of blood circulation, digestion, and the cleansing of toxins. Even simpler: if the liver stops working, the body follows.

          At any given moment, the liver holds one pint or two cups or 13 per cent of the body’s entire blood supply. Naturally, hemorrhage is the most immediate risk of surgical complications. The same can be said of my relatives, lost in a time of need, like blood from punctured vessels.

          My mother’s sister lives in Paris. This sister’s husband, the original donor, withdrew a month before surgery due to a “minor scheduling issue.” The truth he admitted to himself much too late was that he regretted offering in the first place. My mother’s sister notifies her by email, shrugging off the burden of breaking the news. My mom now has to tell my dad he lost another liver. My mom’s parents side with her sister. They always do. Just another kind of blood loss.

          My father carries the bloodline of an unbearable family from the suburbs of Lisbon. He has a sister he no longer speaks with, a mother whose phone calls he avoids, and a drunk, unfaithful father who died of a rare, easily misdiagnosed condition. Because of this, and our habit of overcomplicating everything we do, he has renamed the common phrase “doing things the hard way” to “doing things the Portuguese way.”

                                                 * * *

          Every winter, my right knuckles crack like unrestored mosaics, just like my dad’s. His skin splits because of psoriasis, a word he hates for its deceptive spelling. We have often argued about words. In protection of phonology, he refuses to silence the “k” in knife and spitefully mispronounces phrases in French, an infamously non-phonetic language. In honour of precise definitions, he staunchly defends the distinction between lying and withholding.

          January, two months after my 18th birthday, my parents sit me down at our glass kitchen table, which I hate for its perpetual pattern of stains and fingerprints. My mom speaks for both of them. She always does. All I can look at are the fissures sprawling over my knuckles as they claw their way off my skin and into the living room, tearing down the walls of my life. I don’t remember how she phrased it. Maybe it was your dad is sick, or your dad is dying, or your dad has had a liver condition for eight years that was eventually going to kill him and we didn’t tell you. We’ll never agree on the words. I call it lying. He calls it withholding.

          I don’t understand.

          We were trying to protect you.

          That infamous thought that most writers have at inappropriate times trudges shamefully through my mind: what words will I use to describe this? Maybe I chew the inside of my cheek until it’s raw, or my foot falls asleep from the way I’ve been sitting on it, or my blurring vision obscures that hateful kitchen table. So, this is what my father meant every time he started a sentence with “when I’m gone.”

          I had returned home the month prior, lost and confused after deciding to take a leave from school. One evening, Dad and I sat at that same kitchen table, warming our broken, traitorous hands on mugs of tea.

          “When I’m gone,” he begins.

          “Please don’t.”

          “Let me finish.” He waits for me to interject again before he continues. “You’re going to figure this out on your own, you know that right? I don’t want you to feel like you need me. When I’m gone, I want to be sure that I’ve raised you to be independent. That I’ve given you all the skills you need to look after yourself.”

                                                  * * *

          I start conducting research for this essay five months, two rejections, and one World Cup after the transplant. One of the many websites I visit ominously describes my father’s affliction as an “entity of unknown origin,” like it’s a UFO for the government to lie about or withhold from the public and not some blood-thirsty, father-killing monster. Idiopathic Adulthood Ductopenia (IAD) is a rare, chronic condition. Rare in this case means less than 100 reported victims worldwide. No confirmed causes. No known treatments. Type 1 IAD is generally benign and managed with ursodeoxycholic acid or ursodiol, a bile supplement derived from bears. Type 2 IAD ends in one of two ways: transplant or death.

          IAD is characterized by its subtle presentation and difficulty to diagnose. In fact, it is often a diagnosis of exclusion. When it couldn’t be anything else, it might be IAD. We do everything the Portuguese way, so there was no surprise when he got his diagnosis.

                                                 * * *

          It was June. Portugal was playing Ghana in the 2014 World Cup. We had just pulled into Chicago when they got the call. My mom can’t remember the particular chain of suite hotel, but she remembers that the lobby was on the second floor. My older brother was throwing a tantrum about having missed the opening of the game. I was likely looking for the pool. The call came during the second half.

          Larry Berdugo works for Manulife. He is calling to inform them that my father’s life insurance renewal discount has been denied. His blood work produced some unusual results. His ferritin, the protein inside cells that stores iron, was unnaturally high. Berdugo recommends that my dad follow up with his family doctor but would not disclose any further information. Although rattled, my parents carry on as normal. It could be nothing.

                                                 * * *

          I interview my parents over FaceTime while they argue about some chickpea salad my mom bought at the Saint Lawrence market. “Maybe you can add some feta,” she suggests as she returns to the kitchen. “It’ll taste better.”

          My dad chuckles pre-emptively at his own joke. “You can add feta to this, but it’ll taste like shit… with feta.”

          My parents tell me that just as this entity of unknown origin first sunk its claws into their lives, their beloved family doctor went away on sabbatical, leaving them with a temporary replacement. Dr. Ablesohn asked my father if he was an alcoholic. It later transpired that Dr. Ablesohn was also sleeping with a patient.

          “How is this relevant to her essay?” my dad asks as my mother recounts the memory.

          She frowns. “What do you mean? He slept with a patient!”

          My dad laughs. “Yeah, that’s why my ferritin is so high.”

          She pushes his shoulder and continues answering my question. Throughout the conversation, my dad has been interrupting her to pedantically correct minor details. This time, with love spilling from his eyes, he interrupts only to tell her, “You’re so pretty.”

          The Model for End-Stage Liver Disease (MELD) Score is a system used to predict the survival of patients in need of a liver transplant. The higher the number, the higher the mortality. My father’s MELD Score increased at a crawling pace. My mom tells me they fell into a lull for the next several years, booking lunch dates to turn liver specialist appointments and endless blood draws into romantic outings. In December 2021, my father’s score creeped into dangerous territory, and the transplant process began.

                                                 * * *

          Type 2 IAD progresses into Decompensated Biliary Cirrhosis, the scarring of the liver and acute deterioration of liver function. Many of the common side effects come with common side effects of their own. Jaundice leads to the yellow discoloration of the skin and sclera (whites of the eyes). A buildup of fluid in the abdomen (ascites) leads to swelling in the ankles, shortness of breath, digestive issues, difficulty sitting, and fatigue.

          The summer before the surgery, I often come home from work to find my father asleep on the couch. My mother barely leaves time between conducting therapy sessions in her home office to have dinner.

          Variceal haemorrhage, one of the other side effects, refers to the bursting of swollen blood vessels which form when cirrhosis forces the redirection of blood flow through the stomach and esophagus. My father, like me, only does things the Portuguese way. His type 2 IAD also develops into Primary Sclerosing Cholangitis (PSC) which causes bile ducts to scar, narrow, and harden. PSC generally progresses slowly but will eventually cause liver failure, repeated infection, or tumours. The only known “cure” is a liver transplant. The symptoms of PSC are similar to those of Decompensated Biliary Cirrhosis with the addition of itching, fever, chills, and night sweats.

          It has always been my dad’s responsibility to comfort me after childhood nightmares and stomach aches since my mom has a hard time sleeping. I’d find my way to his side of the bed in the middle of the night, and he’d carry me downstairs to make tea. He called it “pinch pinch,” because when I was so small I couldn’t yet see above the kitchen counter, that’s how we measured the leaves of Cream Earl Grey. Two baby pinches per cup.

                                                 * * *

          Dr. Gonzalo Sapisochin works in the Department of Surgery at the University Health Network and has a fellowship in Abdominal Transplant and HPB Surgical Oncology at Toronto General Hospital through the University of Toronto. We are not religious people, but my mom and I call him the guardian angel who performed my dad’s liver transplant in October 2022.

          I email to ask for an interview on a Thursday during my reading week. He responds in less than a day and offers, despite his busy schedule and March break travel plans, to speak with me that weekend or from the airport the next Wednesday.

          “I really wanted to do this,” he confesses early in our interview that Saturday. “Because I know how important it probably is for you.” I wonder if he knows he’s already done me enough favours.

          Dr. Sapisochin explains that “liver transplants only consist of two parts: taking the diseased organ out, and implanting the new one in.” The word only, I’ve learned, has several definitions. When used as an adjective, it stresses the singularity of the described object. I only have one father. When used as an adverb, it acts as a limitation. There are only, or at most, or exclusively, two steps in a liver transplant.

          He mimes the anatomical structure of the liver with his life-bearing hands. His index, middle, and ring finger indicate the right, middle, and left hepatic vein, which drain the liver. The index and middle finger on his other hand replicate the two systems feeding into it, the portal system and oxygen-carrying artery. He emphasizes that it is crucial to preserve these vessels.

          “Once you’ve taken the diseased liver out and you’ve preserved some of those veins, and the portal vein, and the hepatic artery and the bile duct—which you’ve tied, right?”

          I know it’s nothing more than a linguistic habit, but the way he almost asks for confirmation makes me laugh.

          “You’ve kind of clipped it so it’s not bleeding.” He gestures with his hands, waving his splayed fingers through the air to mimic spurts of blood. My father lost 1.7525 L of blood during the surgery. I hope it looked nothing like that.

          “Then you put the new liver in, and you need to connect all of this. So, you need to connect the veins on the top, then you need to connect this vein—” he indicates again with a gesture. “You put this together. Then you connect the hepatic artery, and you connect the bile duct. And that’s it.”

                                                 * * *

          My dad’s liver transplant takes place two months before Argentina beats France in the 2022 World Cup. There isn’t nearly as much crying as I thought there would be. The night before the operation, we eat sushi in the patient atrium. It’s objectively unimpressive, but we get to eat it together. The lights reflecting off the glass walls make the evening sky look like it’s full of stars. An astrological performance. I play piano for the first time in months. I’m struggling to remember the chords, but the acoustics are magnificent, so I sing anyway. My mom takes videos to send to her friends.

          “I’m going to see you tomorrow,” Dad announces decisively.

          Things feel strangely normal that night.

          We wake up early the next morning to go see my father’s saviour, a high school friend of his who heard about my biological uncle dropping out and offered to take his place. He’s smiling and peaceful as he tells us how thankful he is to be able to do this for all of us. My dad fondly calls him crazy. I call him my new uncle.

          Once they take him away, we go to see my dad and wait to meet his surgeon. Dr. Gonzalo Sapisochin comes in to introduce himself and I see my mom is immediately more at ease. He tells us he’s from Spain then asks my dad where he’s from.

          My dad grins deviously. “Portugal. Will that be a problem?”

          The surgeon smiles. “Not at all. I love Portugal and I love Ronaldo.”

          My father makes jokes and laughs until they wheel him away while my mom and I weep in the hall. After the surgery, he is a host for tubes for things I can’t name. And he jokes, putting on a stand-up routine from his hospital bed, because that is what my father does.

                                                 * * *

          My earliest memory is of my dad and a swimming pool at a Cuban resort. He holds two-year-old me to his chest; I’m too scared to put my head under water so I refuse to swim at all. There are two women with us. I can’t picture their faces, but I remember their distinct British accents and friendly voices. They chat with my father, flooding him with compliments about how cute we are.

          “You look so much like your dad, don’t you?” one of them asks me. I doubt I bothered to answer, being too busy playing with a leaf as it floated on the surface of the pool.

          While my mom and I wait for news at a rented apartment a few streets down from the hospital, it occurs to me I might need to gather memories for the eulogy if the unknown entity wins. I remember the waiter’s name from the resort, the swimming pools and arguing over semantics. Why can’t I remember anything else?

          I grew up being told how much I look like my father. How I make the same jokes. How much I am my father’s daughter. I carry so much of him in the bridge of my nose, the way I measure my tea, my splintered skin. He made me who I am, and I’m unable to remember him as he deserves to be remembered. 

          I eventually recover from my bout of amnesia, but the panic does not subside. How many memories of my father have I already lost to the passage of time? What about those I might never have the privilege to lose? The ones I won’t get to make.

                                                 * * *

          We can’t go away for the winter holidays like we normally do because my dad isn’t meant to spend much time in the sun after the surgery. It’s a small price to pay, so we make the best of our first cold Christmas in several years. We decorate the tree, and my dad performs one of his famous interpretive dances to Mad World by Tears for Fears. I film it and cackle from a bean bag next to the fireplace.

          For years I have begged my father to write a memoir. Eventually I decided I would have to write it myself. I was worried the first chance I got to write about Dad might be for a funereal ode. But this is not a eulogy. How lucky I am to say so.

Eleanor Mota is a 19-year-old with the belief that anything, when written right, can be a story. She is currently pursuing a double major in English Cultural Studies and Russian at McGill University. Having recently discovered the wonderous genre of creative nonfiction, she hopes to finally give her infamously long-winded stories a home.

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Additional reading

Sicilian Blue

Age of the Machine

Beyond Control