Article Category Archives: Creative Nonfiction

Dragging My Soul Across A Hellscape of Broken Glass, or One Woman’s Account of Filing For Disability Support

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Last summer, I quit a performance I was doing with my collaborators in Calgary and booked a ticket home. I quit because my body had quit. My body was having “seizures” all the time, even when we were all three in our Charlie Chaplin costumes, inside the space we’d made to “live” in—a cozy little cell copped from the Chaplin film Modern Times, with a viewing window as in a zoo/museum exhibit. I couldn’t keep the movements from happening, the jerking of my arms and legs, even when the eyes were on us. I had to laugh and wink toward the glass as though letting the audience in on the joke, this Chaplin who has no control, this master clown who’s lost even the smallest amount of mastery over their body.

Later, the tears wouldn’t stop as my neck went rigid and jerky and felt like it’d snap. I barely got myself home, to the place I was housesitting. I barely got myself online, got a ticket. On the plane I held my neck in both hands to keep it from spasming too obviously. I turned my face to the window and cried until I ran out of tear-water. My collaborators empathized, they said it was ok, that I needed to forgive myself, that health comes first. I’ll never forgive myself. I am not a person who quits. I don’t get bested by pain. I suffer through it.

I suffer through, until it’s impossible. I need to dig a grave for the brightest part of me. I can’t act on stage any more, or in small enclosures as Charlie Chaplin, either. I don’t know when my limbs might jerk, or a loud, guttural, noise might leap out. Unreliable. I flew home saying goodbye to myself. I’d delayed this goodbye for so long—at least a year past the point when my hands flapped by themselves on the stage floor as I “lay unconscious” as a—hilarious!—character in chronic pain, in a play that had been written by a mentor of mine. I held my body still with force, to keep more flaps from polluting the performance. Later, she told me I’d ruined her show. Slowed it down. Did I? Added whole minutes with my pauses. Did I do that? Brain fog? Blackout? Did I fuck up that badly, or was I being gaslit? Did it matter? That one moment with my hands moving on the floor without my consent was enough. Unpardonable. It didn’t matter about the rest. If the instrument doesn’t function, it can’t be played in public any more.

I delayed the end of things, long past the point when performing meant giving up everything else. It’s meant that for years—five years, ten. An ascetic existence with all energy bent toward the magic hour on the stage. The rest of life caves in, becomes nothing but flare. All energy consumed in the time with the audience. I was in love with it. There’s something in me that isn’t there until I’m someone else, saying someone else’s words, making new some story that’s been rigidified on paper, making that magic feeling grow in the room under the stage lights, forgetting myself, allowing for other, allowing for a new sense of my physical self—how it stands, moves, where it holds its fear and power. How my voice is habitually caught, and how I can release it in larger, bolder sounds than I’d ever make myself.

I came home last summer in a state of emergency, with a sense of ungroundedness, of floundering. What do I do now? Who am I if I can’t be on stage? Why is my body so reactive? Is this all due to fibromyalgia? Am I possessed? My doctor made an appointment with a neurologist. I’m still waiting, a year later. I went to my naturopath, who, before talking about the seizures, asked me about my financial situation. (Freelance artist. Poor.) She suggested disability support. “Stress makes everything worse.” Asked if my parents could help me. I broke down and sobbed. She offered to treat me for free by email for a while, but I felt ashamed, and her pity unfurled my courage. I haven’t been back since, although it was the naturopath who made the connection between the worsening of my seizures and the medication the doctor had me on. My doctor was astounded at the correlation but admitted it made sense, and we started the dark, autumn-long weaning process where everything got worse and I regularly had the thought that I should die, so as not to be a burden on the world any more.

Throughout that time, I filled in forms, made lists of symptoms, and wrote paragraphs about my pain, my daily routines, why I could no longer maintain employment. As a self-employed, freelance artist working in several disciplines, it took a few months to prove my income was even valid, according to the government. Paperwork designed to regulate the disregulated and make sense of how dysfunctional you are, in comparison to other lives, other bodies—are you sick enough to be disabled? Or are you just sickly? Doctor must file medical report. She said she’d do it if necessary, but most people with fibromyalgia don’t get disability. I said I know, it took my mom three tries and a lawyer. I need this. I’m over a barrel, as they say. (Why do they say that?) I’m over a barrel and have no choices left. Can only write an hour a day. And writing pays nothing. I pay to write! I used to feed the habit with that fat acting cash. Get a film role every three years, put it in the bank and leak it out slowly while I similarly eke out the paragraphs. (Maybe I can still do film. Small roles? Short shoots. They can always fix me in post. Edit around the spasms and twitches).

It’s been seven months since I sent my claim in, and it’s been denied because they haven’t received my doctor’s report. Seven months later, and it’s still in the to-do pile. She’s paid eighty-five dollars from the federal government for each report. I call Service Canada. I talk to a kind and empathetic individual. She’s never heard of a late doctor’s report being the reason a claim was denied. It simply doesn’t happen. I go to the doctor’s office in tears, with a fresh copy of my paperwork and a plan to threaten a complaint to the College of Doctors and Physicians, if need be. My heart is in my lip, making it twitch, it’s in the front of my throat, and I feel queasy. My doctor is a nice person. She means well. I’m prepared to threaten her reputation, if I have to. I need this done, and I need it now, before my window for appeal runs out. I need this—a meagre-yet-steady income that would let me exist. Can a doctor understand this kind of desperation? I need a trickle, a steady trickle. The doc says I’m next on her list. It’ll take two weeks. I’m crying. She’s sorry. She has two thousand patients and five hundred reports due. She says it’s not her fault and not my fault. It’s their fault for requiring so much paperwork. No word from the neurologist on an appointment yet, but “I don’t think it’s life-threatening, whatever’s going on. Fingers crossed.”

What right to care can I expect? What right to be heard, understood, supported? Today, I’ll write to Service Canada with my letter of appeal, describing how my doctor’s been overloaded, and that’s why she hasn’t sent in her report, which they can expect by the end of this month, she’s promised. I’ve always been the type to believe in promises. Then I’ll cross my fingers, and wait four months for the review of my file. There’ll be another denial, this time on medical grounds. The government health advisor will find my body not yet tragic enough. Then I’ll hire someone to help me, someone who only gets paid if you win. The months will stretch on. I’ll keep auditioning for television, voiceovers—if I could land a decent walk-on, it’d keep me in kale and tahini for a few months. I’ll keep trying for translation jobs online, too, ghostwriting, editing—little gigs I can feasibly do. I’ll write grant applications and hope for something good to happen. I don’t know what, or when, or how. Hope keeps me upright and moving forward, even when my progress is so slow, it seems I’m inert. I’ve been dragging my past behind me, but it’s a new era, now.

A second act.

The stage is full up with actresses, strong, smart and hungry. I sit in the audience and try not to spasm. I do my best not to let my broken heart show—my final, ongoing performance.

You Can Do Better Than That

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I was two days away from my thirty-second birthday and giving birth to my first child.

“Push, push! Come on, you can do better than that,” the nurse was yelling at me.

“No, I can’t. I’m giving it everything I’ve got,” I remember saying.

“There’s something to be said for having your kids when you’re younger,” she grumbled.

Everything after that is a blur. My baby boy came out healthy and demanding my attention from his first breath. He weighed nine pounds but the statistic that impressed me was that his head circumference was thirty-seven centimetres.

“That’s a large head,” my doctor later told me. “Good for you, you did so well.”

“The nurse didn’t think so,” I said and then recounted my “moment” in the delivery room. I was still angry weeks later and now so was my doctor.

“Some people still believe that the best time to give birth is in your early twenties. It’s old thinking,” she said.

“Who’s ready for that in their twenties?” I’d had a long labour and a tough delivery.

“Exactly,” the doctor said.

Since then, a number of my friends have had their first children at forty-two and forty-three. I didn’t think that unusual. My mother gave birth to me when she was forty. And back then, that was definitely rare. I was the youngest of three; my sisters were ten and fifteen when I was born.

“Why the big gaps?” I asked my mother.

“Sometimes you can’t plan these things,” she said. “I wanted five-year spacing but after your sister was born, I had a hard time getting pregnant again. But I really wanted a third child so we kept trying,” she explained. “And now here you are, what a gift.”

“Was it because dad wanted a boy?” I asked what I had wondered for so many years.

“Oh, maybe,” my mother said. Her eyes were sparkling and she was smiling. “But he was thrilled when you were born. We both were.”

Looking back, I realise that I have always been around people who were older. It was normal to me. There were my parents, and my parents’ friends; my sisters and their friends. No one was surprised then, that I married a man twelve years my senior. I wasn’t bothered by our age difference too much, although there were times when I wondered if it was a good idea. I remember talking to my mother about it once and our conversation went something like this:

“If on average women live seven years longer than men and he’s twelve years older than I am, I’m going to be alone for nineteen years. I don’t know if I want that,” I said.

“Yes, but remember, those are statistics. You can’t plan your life out too carefully. Sometimes you just have to live it.” My mother adored Eric.

We had been married for ten years when both of my parents moved in with us. My mother had been diagnosed with Alzheimer’s and needed care. My sisters were working full time but I had taken time off the paid workforce to raise my two children. I was at home anyway, so why wouldn’t I look after my parents too?

 


Holding On (hooked rug) by Laura Kenney

 

Looking after my parents was not only what I wanted to do, it was what I had been raised to do. In our Portuguese culture, it’s normal, it’s expected, it’s just the way it is.

Our situation was more complicated than most in that my parents didn’t speak English very well. They had immigrated at the age of fifty and their knowledge of English at the time was limited to a few words and sentences. Both of them had started their Canadian life working hard, each of them often juggling two or three labour-intensive jobs. Learning English dropped on the priority list—they had to house and feed their family. After nearly three decades, they could get by in their adopted country, but their English was still broken.

As my mother’s illness progressed, she lost all of her ability to speak English and could only communicate in Portuguese. To have put her in a home would mean that one more time in her life, she’d be unable to talk to anyone. I couldn’t fathom that. So Eric and I invited them to live with us. My sisters helped regularly and, later, there was support from the health system. Still, for a few years, my life was a whirr of caregiving. I remember taking my parents for coffee one day. It was their preferred outing: coffee and a biscotti in the afternoon. As we were walking from the car to the coffee shop, we took up the entire sidewalk. I was in the middle; my mother held on to my arm on my right, and my father, with his cane, held on to her. On my left, I held my son’s hand and he held on to his sister who was then about four years old. We must have made quite the scene. One woman walking toward us stopped and said to me, “Well, aren’t you the sandwich generation.”

Yes, yes I was. My days were full of caregiving from the moment I woke up until I laid my head on the pillow at bedtime. And sometimes I’d be called upon once or twice during the night too. My morning shower was the only time I could guarantee that I would be alone. Sometimes, when I took an extra long shower, there would be a knock on the door, “Mommm! Vóvó needs you!”

I remember crying in the shower one day, thinking, Oh my God, I am going to be looking after needy people for the rest of my life.

That night, in bed, I turned to Eric and said, “I’m going to need to look after you too, aren’t I?”

“Maybe. Or maybe I’ll have to look after you. You can’t always plan, sometimes you just have to live, isn’t that what your mother said?”

“Yes, you’re right. I mean, I could step off the curb one day and get hit by a truck. That would be horrible.” I remember laughing so hard after I said that. I was exhausted.

My mother died after living with us for two years. My father died nine months later. And then, two short years after that, when we were finally recovering from all the grief and were establishing a new normal in our extended family, my sister Maria was diagnosed with aggressive, terminal cancer, and died. She was fifty-six.

Today, I am the same age Maria was when she died. I have taken a leave from work and I have become a student again. So many people, friends and strangers alike, have said to me, “Wow, good for you. A student. I don’t think I could do that, not at my age.”

That baby I pushed out all those years ago has now finished university; his sister is halfway through. Both are adults with their own dreams. Eric will retire at the end of the year and soon after that I hope to get my degree. No part of our lives follows the expected trajectory. We seem to live life by the seat of our pants and, most of the time, I wouldn’t want it any other way.

Africa: An Apology

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Dear Africa,

I want to apologize. I had no reason to abandon you. I had no reason to push you away. I wanted to hide from you. I wanted to pretend that you didn’t exist. But I know you have always been in my blood. Rushing, pumping, flowing.

As a child, I remember enjoying the uniqueness of my family. My mother was an Afrocentric, biracial woman with a strong desire to expose her children to diversity and equal opportunities. My father was a tall, dark Angolan man who was funny and spoke to everyone with a natural grace and fluidity. Our home was filled with beautiful African décor. Our dinners consisted of traditional Angolan foods that stuck to our bellies. The rhythmic sounds of Semba and Kizomba bounced off our walls and I would bask in its comfort. Occasionally, we would get together for parties with other Angolan families in Toronto. There was laughter. Dancing. Music. Food. This was one of my first experiences of community. I was proud of my family and what we represented in our small, southern-Ontario town.

And then, suddenly, I wasn’t. I wasn’t proud of my culture. I wasn’t proud of who I was and where my ancestors were from. I didn’t want to be associated with Angola or known as African. For a long time, I disconnected myself from my African bloodline. To this day, I am unsure why.

There was shame; maybe I thought you were not good enough. There was ignorance; your standards of beauty didn’t seem to measure up. There was embarrassment; your history hasn’t been victorious. You were the defeated land, the place that had lost every battle. So please understand that a part of me also felt lost and defeated.

I wanted to escape our connection, relinquish our relationship, cut all ties. Almost instantly, I removed you from my life. I told myself I wasn’t African. I told others I wasn’t African. I omitted certain details from answers to questions about my family. The process of removal was not elaborate or complex—I simply decided one day that I no longer wanted to be connected. I pushed you into a dark closet, locked the door and threw away the key.

It took a lot of growing, heartache and inward reflection to accept that my blood is my blood and nothing can change that. I started with forgiveness. To change the lens through which I saw you, I needed to forgive the person who represented you: I needed to forgive my father for his growing absence in my life. With time, Africa, you no longer represented an estranged relationship. You were part of me that I had neglected for years.

Today, I see your beauty. The face of my grandmother. The faces of the Mandume women whose tribal blood runs through my veins. The faces of the Mwila women whose dreadlocked hair resembles mine. When I catch my own reflection, I see your details in my face. My eyes, nose and lips resemble that of your beautiful warrior people. I share their blood. My daughters share their blood.

Africa, I now long for the opportunity to meet you. To step onto the lands my father called home. To smell your air. To touch your roots. To feel your sun. I admire you. In a world of constant flux, you continue to prove your resilience. I stand still in your waves of strength. At last, I stand still in your undertow of tenacity. And I no longer run.

You make up everything that is great within me. My blood is thick with your culture and rhythm. My blood pulses with your wild tenderness; your mysterious softness. An unstoppable current of unchangeable identity. I am grateful to have finally found peace in your arms.

With love,
Ciana Paulino

Unapologetic by M. Falconer

Mabel’s Fable

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1:1

Once upon a time on a warm autumn night, a girl was born on a farmstead in Craigleith, Ontario.
Orchards surrounded the farmhouse and the air was ripe with the scent of blood and fallen apples.

The doctor observed the baby lying in the palm of his hand. Said, “Best not to feed her. Just leave her on a pillow near the open window. She’s much too tiny to live through the night.”

But the baby didn’t die. She grew into a woman who was small, but mighty. When she turned sixteen, she left the farm for the city to find work. She waited on tables in a café where she could watch the ships come in as she poured re-fills of thick, black coffee. She had a child. Years later, her child would have a child. Me.

This much is true.

1:2

Both Cinderella and Snow White are victims of wicked step-mothers: sharp stab of poisoned apple in the throat, the burn of lye on red-raw hands.

Step-fathers or step-grandfathers (even secret ones) rarely figure in fables. We therefore don’t know how they would relate to the main character. Good or evil? Divine or dastardly?

1:3

Gill Road is named after my great-great-grandfather, Perry Gill. He begat Whitford and Ermiza who begat Anne who begat Clarence, Howard, Alberta and Mabel. There’s a pioneer cemetery down the hill from the farm. I play among the weed and wildflower, reading the tombstones like braille. Grandma says she has a little sister sleeping under the moss. There’s no marker because she died before she was baptized.

Didn’t God want her?” I ask.

1:4

In the farmhouse kitchen, molasses drips thick from the measuring spoon into the broad-brimmed bowl. Outside, barn swallows chatter and help hang laundry on the line. Grandma, in her mint-green dress and daisy print apron, shows me how to measure the bran, sift the flour, fold in the buttermilk. I run my finger along the side of the bowl and lick the batter from sticky fingers. She says, “I had four marriage proposals you know. One of them was from a millionaire.”

Grandpa sits at his desk while we bake, Bible open, scratching out his Sunday sermon.

1:5

“Fewer than one in four Americans now believe the Bible is the actual word of God and should not be taken literally word for word. Similar to the 26% who view it as ‘a book of fables, legends, history and moral precepts recorded by man.'”
—Gallup Poll 2017

1:6

In 1969, with the slogan “The state has no business in the bedrooms of the nation,” Pierre Trudeau’s government introduced the Omnibus Criminal Reform Bill, legalizing abortion, divorce and birth control.

But in 1949, section 251 of the Criminal Code implied that women who have abortions could be charged with breaking the law.

This didn’t stop Grandma from trying. Twice.

1:7

Mabel’s lover visits her in hospital, a wave washed to shore only to pull out again on the next tide. The baby begins to wail, scared of the man’s faceless shadow silhouetted against the wall. He ignores the girl, says, “I’d marry you Mabel, but I don’t want a child.”

After he leaves, two different nurses offer to adopt the baby, so Mabel could be free to run away with the handsome Irish? Greek? Italian? man who had come to visit. The faceless man hadn’t begged, and he only asked once, and this was not enough for the woman who survived her first night on earth being left on a pillow to die.

1:8

Birth Certificate

Name: Violet Alberta Gill
Place of Birth: Etobicoke, ON
Date: November 12, 1949
Sex: F
Father: ________________

1:9

A bastard shall not enter into the congregation of the Lord.
—Deuteronomy 23:2

2:1

Once upon a time, there was a young man named Arthur, who was engaged to be married. He lived with his mother in a bungalow in Etobicoke. A woman and her six-year-old daughter rented out the basement. The little girl’s father never came around and the woman, Mabel, didn’t wear a ring. Even though the woman was ten years older, and his mother thought she was a loose woman, Arthur knew he’d never love anyone more, so he broke off his engagement and asked Mabel to marry him.

Adopting my mother, Violet, would be a small price to pay for true love.

2:2

Mom,” I asked, “Why do Grandma and Grandpa both have blue eyes and you have hazel?”

2:3

The laws of genetics state that eye color is inherited as follows:

1. If both parents have blue eyes, the children will have blue eyes.
2. The brown eye colour gene (or allele) is dominant, whereas the blue eye
allele is recessive.

Therefore, if a child born to two blue-eyed parents does not have blue eyes, then the blue-eyed father is not the biological father.

2:4

Marrying a family is not a bad thing, but can be a beautiful thing. I wish this blessing for you.
Of Human Bondage, Somerset Maugham

2:5

Some believe the expression “Blood is thicker than water” originally derives from the biblical phrase “The blood of the covenant is thicker than the water of the womb,” implying that the currently accepted meaning is the opposite of the original intention.

2:6

My mom snuggles into my dad’s shoulder as we walk from the farmstead along Gill Road to the general store. “I want an ice cream daddy,” she says to him in her little girl voice. I am eight years old and quiet for my age.

2:7

Urban dictionary: Daddy Issues

What a girl has when she is rejected by her father. Often results in her having trouble finding a significant other and trusting people. Girls with Daddy Issues will sometimes marry older men.

2:8

My mother carried the secret of her faceless father like a slow-growth cancer. She burned the paper trail to the blood truth. I sift through the cold cinders till my fingers are grey with soot, knees red and raw.

2:9

In the orchard, I climb into the gnarled arms of an apple tree and pluck a piece of ripe, red fruit. A snake drops down from the branch above, flicks its forked tongue and hisses, “Tasting of its flesh won’t give you the answers you seek.”

I ask, “Do you know who the faceless man is?”

He moves in and out of shadows. He swims in your blood, and that’s all you’ll ever know.”

“But if I eat of the fruit, won’t I know all things good and evil and all that lies in between
?”

The snake laughs, “You’ve been reading too many stories.”

2:10

Fable is a literary genre that illustrates or leads to a particular moral lesson; however, this style of story-telling has gone out of fashion.

2:11

Grandma at ninety-two taps the bedcovers, her body cradled in a field of polyester violets. She beckons for me to lay down beside her. She’s grown tinier still, but heavy with secrets. Her skin smells of lavender and talc. We curl around each other, fetal. A story with no moral and no neat ending, waiting to be born.

Mom-Friend

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You are the Mom-Friend. The Mom-Friend is always prepared for blood, though not in the warrior sense.

Your friends laugh because you carry a first-aid-kit worth of tissues, menstrual pads and Band-Aids wherever you go. But they’re not laughing when they get paper cuts or when the blisters on their feet burst after a hike. They’re not laughing when their runny noses drip like melting icicles onto their shirt collars. They’re not laughing when they’re trapped in a public washroom stall, calling out to you for help with their pants and undies lying limp around their ankles. Mom-Friend to the rescue.

You are the Mom-Friend. Instinct drives you on. It’s in your blood. Your Mom was a Mom-Friend, and her Mom before her. They were the oldest daughters, the watchful and protective stand-ins for their younger siblings while their parents laboured around the farm or did late shifts at work. You were the oldest daughter and it was a job you took seriously. Little kids are all the same. They scrape their knees and get nosebleeds. Like your mother and grandmother, you’ve learned to get Band-Aids on those knees quickly. You taught your siblings to hold their head up, nose pointed to the ceiling. Don’t cry, you told them. Don’t panic. Breathe. No one dies of a nosebleed, you said, as you gulped down your own rising nausea. The waste bin filled up fast with red-blotted tissues. Habitually, you started filling up your purse with packets of them. Grab a handful at the gas station. Just in case.

You are the Mom-Friend. You are absorbent. You roll up your sleeves and mop up the mucus and blood and vomit and tears. The boy across from you on the train is sneezing. You pass the tissues. Co-worker has a wet cough. Tissues. Later, you reach into your purse for tissues to dry your heartbroken friend’s eyes while you seethe inwardly. How dare he? You ask, you ask, and you ask again. You sponge up the rage your friend holds back. You demand an explanation from the world as the blood of your mother and grandmother and great-grandmother and every woman who had a part in making you boils inside. You want to see that red flow. You want vengeance. But that feeling passes, because you are the Mom-Friend, and a healer first. And right now, your friend needs healing.

Mom-Friend, keep your heart, and your purse, full. Always.

Handknit tissue case by HandmaidenBC