And the beauty just keeps shaking me.
MID-DISEASE: Joy to Give, Love to Take
FIRST MEMORY (MID-DISEASE): I put a scratchy wool sweater under my corduroy jumper so that my belly sticks out and I can pretend I am a mommy-to-be while my best friend Diana says “you don’t need to do that, yours already sticks out” and I know that my best friend is right and I begin to wonder when exactly I became so different, with my big belly, Treatments and Pills, from my best friend and I wonder why I didn’t know, until today, with an unnecessary scratchy wool blanket under my jumper, until today, when my best friend told me I already looked like a mommy-to-be at six years old.
You are Pollyanna and I am Wilemena. You are very rich and your house is full of silks and chocolates and you have a lady who polishes your shoes and brushes your hair. I am a little poorer and I have to earn my silk stockings by collecting 24 gems from the river Burnsai. We both have beautiful dresses--yours is yellow cabbage roses and burnt orange embroidery thread around where your breasts are--in the shape of a big leaf. You wear your wooden clogs with the dress and your powder-blue cotton sweater with pearly buttons. I get to wear the deep violet pansy-patterned dress with a v-neck and a long skirt. I wear my flip-flops because they're purple. I don't wear a sweater because I don't really have a nice one. I get to wear the feather headband, the color of my mother-of-pearl cross that Aunt Anne gave me at the farm last summer. All the feathers go one way, like a feathered hair-do that older ladies have when they go to parties.
Your woodshed is our hovel. We live in it like poor girls, starving for milk and sugar. We can eat the blades of grass and pretend they are fancy Italian noodles and the purple honeysuckle flowers are baby shrimp. It is our mission to find the Bluebird. If we don't find the Bluebird the precious baby from down the street will die. Our journey to the Bluebird is difficult because along the way we must fight against the Master and the wildcats. The Master lives in the tree house and throws the tire swing at us if we get too close. If we catch the tire swing and manage to sit on it while it's swinging we have to make sure we no longer touch our feet to the ground until it comes to a complete stop. Otherwise, we are exposing our toes to tarantulas. Once we climb the tree and find the Master we still must be very quiet so that we don't wake the wildcats. They can climb up the tree and eat us, tear us apart, eat us for dinner at any moment.
Days and nights and days and nights go by and we are unable to find the Bluebird. The baby is dying and her mother has come to us to beg us to look harder. She has brought us chocolate no-bake cookies as a prize and a warning of Pete, who says amblance instead of ambulance, from down the street. He wants to see babies die. One time it is absolutely necessary that we run, run, run around the house 16 times and kick the can each time taking turns. You run and kick, then I run after I hear the clink and try to kick it, all the time never stopping to find the can, simply, running, flowing, running, flowing. Each time there is a pause we have to start the 16 times again.
Once, when we are at the 14th kick I say that I have to stop because I hear the baby crying. I explain to you, as you stand peeking around the corner, awaiting your turn at the kick, that I need to get closer to the ground to find out where the crying is coming from, since it sounds like a caved-in tunnel crying. I tell you that you should go back, around the corner, and not be seen by the Master or Pete in case they sneak up on me while I am investigating. But you don't quite ever disappear around that corner. And I am forced to sit down, not to find out where the baby's cries are coming from as I have said, and not to catch my breath as some people watching might think that Mattson girl might have to do because of her Disease, but because I have to keep the shit inside me.
I have to kneel and place one heel into the opening of my anus, not really in it, because that of course would be impossible, but apply pressure and sit on it and pretend to be doing something down near the ground so that you think, as you do for years and years to follow, that I am brilliant and creative and astonishing and that I can come up with so many neat and new ideas to this many-layered, thick-with-tension and exciting Freudian game, while all the time I am holding in my shit as I will do for many, many years, even as an adult during a concert in the public washroom or at my lunch break at work, holding in the shit because I'm too happy living my life, and doing my thing, that I don't want to go to the washroom and maybe make a lot of noise and a terrible stench because of the Pills that I would rather avoid by sitting with my heel up my ass, carefully disguised as genius.
Maybe you always knew. You kept looking around the corner. You never gave me that space. Perhaps you were cruel and you were punishing me. At that time I believed you just had to know if it was the baby crying. Now, years later, I still prefer to think that you were dying of curiosity for the baby and the fear of the Master and the hope of the Bluebird.
We never stopped looking for that Bluebird. But we never found it. I'm not so sure what happened to the baby.
What would it have been like for you, Diana?
“Everyone’s supposed to be like everyone else and your best friend, the Mattson girl from across the street, puts a mask on her face, lies upside down on a board, goes to a hospital.
She’s spoiled. She always talks about herself. She always has to do stupid things that have nothing to do with fun.
I will miss her, though, if she dies. I will hate to see her suffer, in the hospital. She’s my best friend. She makes me giggle. We play good games together. I will be lonely without her. When I see ads on TV for CF I think of my best friend. I cry.”
As we grew older our games grew older. We were Mr. And Mrs. Dee. I was her husband and I loved her very much. And we shared a bed because that is what married people did. And no one loved each other more. At one point we even had children and steady lawyer jobs. I wore chewing gum over my teeth, under my lips so I could look like Susan Dey in the Partridge Family—with braces, because she was beautiful and even beautiful girls could wear braces. And Diana was a cross between a Hardy Boy and the blonde guy from Starsky and Hutch. We scolded our children and put them in a corner, near the furnace if they were bad. Life-sized Bad Boy dolls from a furniture store promotion were alternately our boyfriends or our kids. When we danced slow dances we danced with the Bad Boys. When we wanted to be Mommy and Daddy we tucked the Bad Boys into bed. When we felt like it we stayed in bed as long as we wanted, in love, giggling and talking like a Mommy and Daddy.
Known as the M&M Twins, we put on neighbourhood shows in her gazebo. She sang while I played the portable organ, Abba’s Fernando and Elvis’s Love Me Tender. We served lemonade and chocolate no-bakes. Together, alone, we were happy husband and wife.
When we played with other kids she was always Pinky and I had to be Leather because Pete was the Fonz and Pete was her real boyfriend. But wasn’t I her husband? Didn’t that count for something?
My other husband, when I am about six years old, is Pepsi and he works in the mine. His best friend is Cocoa. Only I can see them, they are invisible to everyone but me. Cocoa and Pepsi like me a lot and refuse to spend time away from me. They are there when I play on the swings, when I make sand castles in the clay cliff behind the apartment buildings, when I play in the truck cap, perched in the back yard, like a playhouse.
They are also there when Diana comes along and says that she wants to be my husband instead. And so the four of us Diana only knows about me play with our old-fashioned dresses and feather-coated purses and we play with Bad Boys from Bad Boy’s Furniture store, the plastic life-sized dolls who become our boyfriends Cocoa and Pepsi leave when they find out. They come with striped prison uniforms, including a prison cap. We dress them in real boys’ clothes and dance with them at elaborate parties thrown in our honour.
And when we play downstairs, in the renovated bedroom, far from my Mother, we pretend that we are husband and wife, so we don’t need the plastic Bad Boys or the imaginary Cocoa and Pepsi. We just need each other, rubbing against each other, kissing on the lips, only once, and never again, but married nonetheless, in our happy little home with Leif Garrett pictures and Barbie furniture, in the basement, far from my Mother.
Once, Mother heard me and Tanya Brown playing soap opera in the back yard, beside the shed. I was Rock, the handsome dark stranger and she was Amber, the blond beauty with no parents. Amber was always upset because no one loved her enough but Rock did and he wanted to prove it. So he always gave her what she wanted.
“Kiss me Amber,” Rock says.
“But Rock, I’m poor and I have nothing to give you,” said Amber.
“That’s ok, I love you.”
“I love you too.”
And they kissed, and they hugged, and Rock rubbed Amber’s hair and the next thing I remember is that I was in the basement, by the old clothes washer and my Mother was yelling at me and then she handed me a red vinyl-covered bible, the one that you get in grade school, when the men come around and hand them out. And I know I had done something wrong but I wasn’t sure what.
I know that I had to stay downstairs for the rest of the dark afternoon and read the bible. And I learned that people were 250 years old and knew that it couldn’t be true. And I knew that Tanya Brown was a lot of fun. She taught me that her mother taught her that whenever you have to do a chore, just make a game out of it and it will be fun and she was right. So when I had to dust in the living room I pretended that I was a poor maid trapped by an evil family and that the rich son really loved me and we were planning our lives together, secretly. I know that Tanya and I were only playing a game, but I guess it was a bad game.
I never played it again.
I am told that I met Diana in a sandbox. I don’t remember not knowing Diana so I can’t say whether or not this is accurate. She is my first best friend because she says it’s that way. She is in charge, no matter what. She tells me that Sandra her doll can speak and I believe it. At the same time, Sandra my ballerina doll speaks to me. She tells me that she is pretty and that there is no doll on the street that we live on like her and that I should be sure to tell everyone. She is gorgeous—with her pink plastic ballet feet, her tulle pink sparkly tutu and pink plastic crown, with the button on her head, the button that makes her turn on her one foot, doing fancy twirly ballerina moves. Not quite like the television showed, but pretty close. Her satin ballerina top is stained with a bit of orange juice but that’s ok.
Diana’s Sandra doll is squishy, with blonde curly hair. My Sandra doll has long black hair, like Cleopatra. Sometimes the dolls speak to each other and tell each other why their mommies are the best mommies in the world. My Sandra doll has a baby carriage, dark pink with white polka dots and white plastic wheels and pom-poms hanging off the side. Diana’s Sandra doll has a big blue baby carriage, that doesn’t sit but lies down. The Sandras get along well, making nice and playing princess. Diana and I get along well too. Tormenting Pete, the neighbour who thinks that eyeglasses are made of glass and flour. We know that God makes them and laugh whenever Pete tells us his recipe.
So I tell Pete that my poo is green and his eyes light up, he laughs, and he says “no it isn’t.” And I tell him that for sure it is and he tells me to prove it. So we go behind the garages at the end of the street. In my small mining town, many of the streets have a strip of garages at the end of them where people keep their cars plugged in so that they’ll start after a night out in the –40° degree weather. Rather than building garages with every house, Falconbridge opted to build strips of garages. They were odd buildings—expected yet secretive. Every family had a garage and you knew that they stored more than cars in their slot.
So behind the garages we went the same garages where, years later, Robbie and you would sneak in, open the back door of a car and have sex and I squatted and I shat grin shit. Not dirty green like baby diarrhea, but deep solid Hunter Green. I know I shouldn’t be pooing outside without a toilet and without toilet paper, but what a cool thing to do. Pete is absolutely engrossed with me; there isn’t anyone else he’d rather be around. He thinks I’m amazing, a freak of sorts, but ok, safe, and to be his best friend for a long time. He knows she’ll make fun of him when he says amblance instead of ambulance, when he shows her and Diana his foreskin. He knows she and Diana will let him play their Bluebird game. But only if he agrees to be Master Bate. Only if.
My Mother yells “time for your Treatment” along the street. Everyone knows it’s my Mother and everyone knows who I am. And she yells “time for your Treatment” and this needs an explanation. Not “time for bed,” “come in from the dark,” “phone for you,” but “time for your Treatment.” And I have to go in there. And I can’t scold her because she’s right—it’s time for my Treatment. And I can’t tell her to not yell it like that because she’s my Mother and she’s right. So I tell Diana my Treatment is a peppermint—a peppermint I get before I go to bed—doesn’t she get a Treatment? Isn’t Diana jealous? I sure hope so. A scotch mint before bedtime—not allowed for most kids.
Diana found out the truth about my Treatment. The true green plastic mask over my face with steam spewing out the sides, distributing Ventolin and turning my teeth yellow. She found out the truth while delivering the paper to us, my Mother inviting her in to the living room while my compressor hummed—and I remember her grape-Popsicle mouth and chin open, wide, while the Popsicle melted down her chin. And we didn’t say a word—like two cats sussing each other out, animal-like, speechless and hesitant. Perched, ready for whatever was to come. I assume my Mother called her mom and her mom told Diana and then that was it then. I don’t remember it coming up again.
Except when Diana needed to use it against me. Just at the right times—when I had charmed the crowd or attracted someone’s attention—Diana let them know I had a Disease—not cruelly, maybe not even purposefully. Each time I was surprised—actually taken aback. Shocked that this could happen again and yet I stayed silent. Never protesting, covering it all up with a shrug of the shoulders and a flippant laugh—yeah, so what—a Disease.
How could she? Who is she to decide? How dare she think that she knows best. How dare she be so presumptuous and arrogant as to think she can decide. And you spend a good many years preparing the speech you’ll give her if she does it again, a good many years running over what you “should have said.” And a good many years plotting what you’ll say to people to humiliate her. But because revenge is too time-consuming and Diana is your best friend full of giggles, compassion and a loving heart, you never get back at her. You settle instead for years of correspondence, occasional visits, and the quiet comfortable knowledge that your best friend still remembers you as you were when it was a bit simpler to be the Mattson girl. You know, the one with that Disease.
At home, in private, there’s one story that Daddy tells that’s my favourite. This is how it goes: Once upon a time there was a little girl with brown hair and brown eyes and freckles who didn’t have a mommy and daddy. She really wanted to have a mommy and daddy to play with and take care of her and take her to the park and buy her a dolly. Once upon a time there was also a mommy and a daddy who didn’t have a little girl. Their house was very empty. They didn’t have anyone to share all their love with and that made them very sad. So one day they talked to a nice lady and asked her if she could find them a little girl with brown hair and brown eyes and freckles to be their daughter. And this lady said she would try but it would be very hard to find such a special little girl. So the mommy and the daddy waited and waited.
And then they waited some more.
And then they continued to wait.
Until it was the daddy’s birthday and the lady came over with the little girl, the one from the beginning of the story, with the brown hair and brown eyes and freckles. And the lady said that this little girl could be the mommy and daddy’s little girl if they all liked each other. And they did. And so they became a family.
And I asked to hear my favourite story all the time, imagining what it would be like to not have a mommy and a daddy, and how sad the mommy and the daddy were without the little girl. And one night, after the bubble bath, when I asked for that story, they both told it to me, my Mother and Daddy, and they told me that I was that little girl in the story, that a long time ago I didn’t have a mommy and a daddy and I wanted one desperately. And they told me that they were the mommy and the daddy, without a little girl to love, and that one day, on August 19th, on Daddy’s birthday, the lady, called a “social worker” came to the door of the lonely house with me. My new Mother and Daddy were thrilled. My Daddy tells me that that was the best birthday of his life. That was before any of us knew about the Diagnosis, of course. Before any of us knew that I was special in more ways than one. Before, when I was the chosen child, the child who didn’t grow under my mom’s heart, but in it, like the poem says. Before the story really began.
I show them all the tubes, pale green, like the colour of a green after-dinner mint, and how they connect to the mask that goes over my face. I show them a tube of Salbutomol, how the stuff goes inside the little medication bottle-shaped container under the mask. I turn on the compressor, heavy blue metal, brought in with help from my teacher, and show them how the steam comes up, through the medication bottle, into the mask and how I sit there and breathe it all in, for about 20 minutes.
I am the center of attention.
The whole health class is watching me do this, staring quietly.
We have to do an assignment about something to do with health and I decided to talk about my Disease. I am sure to tell them all that it’s not contagious. I make sure they understand that it’s a Disease you inherit, not one that you give away.
I have drawn diagrams, from the CF brochures, that show a girl, like me, lying on the postural drainage board, with a person, like my Daddy, clapping her, loosening the phlegm from her lungs.
And then I show them how I cough. I explain to them that coughing is good, that it makes all the bad phlegm come out and that, don’t worry, it really isn’t contagious.
I show them that the Honourable Mrs. Mila Mulroney is our celebrity patron. I show them the picture of her, and Robbie the CF boy. I tell them about 65 roses, how some little kid once said 65 roses, instead of cystic fibrosis and now that’s what Mrs. Mila Mulroney’s charity is called.
Everybody claps when I am finished.
There are other presentations. Some about allergies, vitamins and the Canada’s Food Guide.
I got an A. I knew it wasn’t fair. I had all the equipment, brochures and insight. I had an edge. But I took my A, proudly. And felt special. Felt chosen. Felt worthy of an A.
In the production, in Diana’s gazebo in her back yard, my friend Gene is my dad, Diana’s sister is my mom and I am played by Tim, the next door neighbour. Tammy and I sit on the steps to watch the play as we drink lemonade from Diana’s fridge. In the production, my Mother and Daddy and I are at a restaurant and I order a chocolate milkshake and when it comes I decide that I don’t like it and I want another milkshake, this one vanilla, and I stamp my feet and demand a new milkshake. And on and on until everyone in the restaurant hates me and it is clear that Gene, Diana, her sister and Tim the neighbour all hate me as well.
They invited Tammy and me to a play and we came willingly, excited to watch. Tammy told me it was time to leave, half way through the production. I remember I had been riding my bike around and around the block before I was invited to the play. I remember being happy then, with the wind in my face and the pedals turning faster and faster and Mother and Daddy at home and Rainbow’s End still on the wall, though faded and not as big as it once was.
Even though I had to do a Treatment every day I understood that I was a spoiled brat. Even though I had to take Medication every day I understood that I was a spoiled brat. I am a spoiled brat because, years later, living with college roommates, I turn off the light switch when I leave a room even though they are still in it. I am a spoiled brat because, years later, I control all things that belong to my husband and me, including the colour of the paint in the house right down to the laundry soap we buy. Even though I am told that I have to do clapping, take pills, stay healthy or go to the hospital again, I understand that I am a spoiled brat. And that I am also very confused.
Wondering how a spoiled brat could be the same person who has to go the hospital, has to do Treatments, has bad bacteria in her lungs, has a very serious Disease. Since good people get good things, I begin to wonder if it could be possible that if I wasn’t such a spoiled brat I wouldn’t have the Disease as much anymore. I begin to wonder that if I shared my bike, gave my Popsicle away, did what the kids said, then maybe I wouldn’t have the Disease as much anymore. And everyone would like me. Everyone on my street would want to be my friend and the Disease would go away.
PNEUMOTHORAX [nu:mo:£oræks]: a collection of air or gas in the pleural space, which surrounds the lungs; sudden sharp chest pain, especially made worse by a deep breath or a cough (the placement of a chest tube between the ribs into the pleural space allows the evacuation of air from the pleural space; with the chest tube in place, the lung may take several days to re-expand.
When I fell from the top uneven bar to the bottom uneven bar while attempting a kip and landed on my butt, straight down, knocking the wind out of myself, while I tried to breathe deep, compose myself, and stop my heart from pounding out of my chest, I felt my lungs for the first time. I felt them sharp, panged, not working, choking me.
I’m in junior girls gymnastics which means that I actually had to try out to get on the team—not like volleyball where I just sign up and play when I want, because I’m not very good at it, being small and wimpy and skinny and short. I’m a stout little tea pot. All muscle and energy wound up like a firecracker, about to explode. Diana sees me doing handstands in the front yard and she tells me that I should be in gymnastics like her. So Mother signed me up and there I was—in my burgundy nylon bodysuit and pink stirrup tights, grips on, chalked hands, calloused and blistered, didn’t matter because I was like Lefty, the one-armed gymnast, in the Disney movie, and Nadia Comenic.
I flew around and on top and over the uneven bars like they’d been in my bedroom my whole life. I tumbled on the beam, jumping high, holding cartwheels, vaulting off. I stumbled through floor routines—my weakness—but I could get the same points for doing a handstand in a circle as I would for a summersault mid-air so I avoided the tumbles, took the handstands instead.
My body was made for gymnastics—short, barrel-chested, fat-less. My body was made for gymnastics—brown eyes, long brown hair in a ponytail, long fingers that stretched around the uneven bars. My mind was made for gymnastics—set up for routines and predictability; following this routine and that, tumbling here, tumbling there, never straying from the requirements. My life was meant for gymnastics—out three times a week, away from home, with people my age, acting goofy. I was a side show in some ways—my Solid Gold Dancer and Drama Queen floor routines were a hit.
But I was a coward. It took me hours and hours to try a new move; to trust that the coaches would not let me get hurt. To know that I wasn’t the one person who would be paralyzed in hundreds of years of the gym club. That I wasn’t the one who would have my brains come out of my ears when I hit the cement instead of the mat. It took a lot of convincing and patience on the part of my coaches to get me to let go of the top bar completely before touching the bottom bar and continuing on. I needed a play-by-play of what might happen should I miss that bottom bar. I needed to see someone else do it a hundred times before I tried it.
But when I did, and I made it, and Mother and Daddy came to see me compete, and my teammates congratulated me when I nailed it, and the sweat glistened on my back and my ponytail started to curl with the wet of my sweat and the calluses broke beneath the grips, I knew that I had a talent that not everyone had. I knew that I could say that I belonged to one team just like all the others. For talent, not for Treatments.
There’s a hole in my straw, dear Eliza, dear Eliza.
I’m standing and singing on top of my student desk, at lunch hour, when Mrs. Chaisson leaves the room for a few minutes, holding the straw that is supposed to go in my carton of milk handed out by the lunch lady. I’m gullible—someone dared me to do it. Mrs. Chaisson is not impressed when she walks back into class.
Hector Sloan, who looked like Elvis and was my one true love in Grade 4 took one of my Pills as Mrs. Chaisson walked in. I didn’t ask him to or give it to him, he just reached out and took it while I got down from the desk. And Mrs. Chaisson saw and freaked out and asked me what would happen and I said he’d get diarrhea. They brought us to the Principal’s office and called my mom and my doctor and they both agreed that Hector might get diarrhea. Hector and I dated for two weeks until slut Paula took him away from me in her snazzy one-piece snowsuit and her cute smile.
When school’s out for the summer I’m off to Grandma’s Farm in Esterhazy Saskatchewan with my family. In the middle of the flat burnt orange fields, gravel roads away from the highway, without electricity or running water, out there in the farmhouse with a pantry and old butter churn and wash basins, tin ceilings and hidden bookcases under stairs, I learn that everyone knows I have the Disease and they’re adults so they don’t care. So I run around, freely taking my Medication, coughing away, getting my Treatments in the cab of the pick-up, the compressor running from the cigarette lighter, steam filling the cab. I’m allowed to listen to the battery-operated tape recorder so I learn to love Conway Twitty’s Lord I Love a Lady Wearing Tight-Fittin’ Jeans and Sylvia’s Nobody.
One summer at Grandma’s Farm I built a grave for Audrey Rose. I built it up past the horseshoe pits beside the log fence. I pulled the grass out with my hands and tilled the soil with a spoon. No one saw me do it. I made a cross out of a poplar branch tied together with foxglove. I wrote her name on a piece of hand-made paper and hoped the rain would not come too soon.
At night, when Mother and I went to the outhouse I tried to see the grave in the dark. I felt the shivers run through me and hurried on ahead. Mother had no idea. Only I knew the real Audrey Rose, the one from the movie, about reincarnation, the movie that I saw, snuck out into the living room and saw one night, and only I knew to put her in the ground now or never sleep again.
At the beginning of the summer journey to my Grandma’s Farm there are songs and games. Lucky lucky white horse, lucky lucky lee, lucky lucky white horse, bring my wish to me. We come over the final hill and because I am the first to see the sauna I get to hug all the aunts and uncles before anyone else when we pull into the yard. The farmhouse seems smaller every year. The granary has a hole in the roof, but Dad and some uncle will fix that. I wonder if Peter-the-Beaver still lives in the dam. Cousin Jennifer washes laundry in the basin outside so I hug her first. She wraps her cold, wet and soapy arms around me and I squint because some soap gets in my eyes.
I found the stone under the combine on the Haarinen's quarter-section. It looks like a Bigfoot print. Mother has always said I shouldn't go near the old tractor, sitting rusty on the Haarinen land, but this time I squatted down, behind it, because I thought the deer wanted to hurt me. It saw me running to catch up with Dad miles away. And it snorted and kicked its front legs. When I moved forward, it moved forward. When I moved back it came closer. A deer's a deer and I was scared. So I knelt behind the combine. And I screamed for Dad to help. And the deer left. It disappeared into the woods and probably ended up near our salt-block. But that is when I found the print. Or the stone; or the freak of nature. I think it's a Big Foot print. Some say the Sasquatch could very well live in Saskatchewan. I don't see why not, there's lots of room for such a creature. Maybe that's the rustling I hear behind the granary when I'm on the way to the outhouse.
Dad and Uncle Einar let me play cow-patty golf with them. They use dried cow dung as golf holes and walk through miles of farmer’s fields playing more than 18 holes of golf each time. I like to play with them but today I put a nine-iron through a fresh one and then I had to clean it off in the dam. So I decided to catch gophers instead. I propped up a wash-basin on a stick and placed pieces of bannock under it. With the string tied to the basin, I sat on rough, dry yellow grass and waited. When the gophers came, I pulled the string and screamed in triumph. I did this all day. But I always let the gophers go free.
Aunt Elsie and I pick wild flowers everyday. Some buttercups, daisies and bluebells. Lavender's blue, dilly-dilly, lavender's green. If I were king, dilly-dilly, I'd need a queen. Then we put them in the old green vase and placed them in the middle of the table. Aunt Elsie watched me do crossword and word-find puzzles, but she would not help me because that would be cheating. She sat with her quilt and added more patches of colours and stripes and dots. When we looked out of the window we saw a deer across the road and on top of the hill, licking the blue salt block and carefully looking around. Was it the same deer that chased me? Lavender's blue, dilly-dilly, lavender's green. When I am king, dilly-dilly, you'll be my queen.
At night the coal-oil lamps are lit and the moths flutter in and out of the globes. The farmhouse smells of chicken in the oven, roasting overnight. All the aunts and uncles and cousins are in bed now and Mother and I sit together in the living room that used to be the whole house. Mom says nine kids and two parents lived in that living room, but I don't believe her. She reads me the story of the Pieni Keltainen Kissa and I fall asleep. I guess she carried me to Grandma's old bed because that is where I woke up after dreams of mandolins and bright sun.
The morning sauna wakes me up. The steam rises and I can barely keep my eyes open. It stings so much and now I can hardly breathe. I walk out naked into the bush and pee behind the well. All the aunts and uncles like the sauna really hot and they don't really think of me. They slap each other with vihta but I am too scared the dried leaves will hurt. I often wonder what it would be like to touch the hot rocks that are the colour of lava. If I just did it really quickly, what would happen? After the sauna we swim in the lake and I watch the dead skin float around me in the water. I hope Peter-the-Beaver doesn't bite my toes.
At the farm, we call it Monday, Tuesday, Wednesday, Thursday, Friday, Esterhazy. What used to be Saturday is now the day we all go to Esterhazy and pick up stuff like flour and bacon and if I'm lucky I get a new pair of earrings or a huge crossword book. After we finish up in town we have to get ready for the Johanus picnic. We welcome mid-summer with a bonfire in a field and dancing in a huge barn. Uncle Carl plays the mandolin while Frank blows on his harmonica. Sometimes when they play Finlandia I cry, but I'm pretty sure no one sees me because it gets pretty dark. I met a girl from Vancouver there and she wore expensive shoes, which I thought was kind of silly considering they would be covered in mud and hay dust by the end of the night.
We visit Aunt Irene who lives in Whitewood and has bright red-painted fingernails and blond, blond hair. She always has Conway Twitty or Kenny Rogers playing in her trailer. My parents talk to old people and I just sit quietly. Finally, I make the move to Aunt Irene's few paperbacks by the couch and that is when I find Audrey Rose. On the cover, her name is in raised silver letters, with a bright pink rose twisted around it, dripping with blood. The Reincarnation of Audrey Rose. I open the book to the middle and see black and white pictures of Audrey Rose and her family and her psychiatrist, like they appear in the movie, about the book. I read the front of the book and the back cover bits and figure out that reincarnation means you come back as someone else, only if someone dies at exactly the same time and exactly the same way as you. And they have to be the same age as you as well.
Aunt Irene sees me reading and tells me it is a good book, but Mother thinks that maybe I should put it away because we are about to leave. I can't fall asleep back at the farmhouse. The curtains blow too much and the coyotes howl too close to the farm. When I crawl into Mother and Daddy's bed because I’m scared about reincarnation, Mother says I shouldn't read such nonsense.
I knew that even though Audrey Rose was only a pretend person from Aunt Irene's paperback The Reincarnation of Audrey Rose, she was the reason I could not sleep alone in Grandma's bed at night, but had to sleep with Mother. Audrey Rose was the reason I had to make sure I prayed for all my relatives before I fell asleep. She was the reason I decided there were others in the dark besides the fireflies and foxes.
By the end of the summer I had not meant any others in the dark and Audrey Rose was no more. I built a grave and buried her.
Soon after I built that grave I decided that I no longer wanted to go to Grandma’s Farm. Grandma’s Farm had no TV, it had no roller skating places, it had none of my friends and especially didn’t have amblance Pete, my new boyfriend. All it had was my embarrassing parents in their embarrassing Wondering Wheels camper van with the “Don’t follow me, I’m lost too” bumper sticker and Kenny Rogers music playing as we drive along the long, endless, flat and dull highways of Saskatchewan. I didn’t want to spend weeks and months with my Mother and Daddy, cramped in a van without a shower, in a place without my tapes and stereo, without my hearts and rainbows décor and Genesis posters. I didn’t want to hear my Mother telling me to take my Pills, drink my high-fat milk, eat yet another sandwich. I didn’t want to watch my Daddy chew on his toothpick, spit out the van window, adjust his cowboy hat. I wanted to stay home, hang out with my friends, put on some lipstick that Aunt Diane gave me from her Avon samples and possibly dump amblance Pete and start to date Hector again, the boy who looks like Elvis.
Too old for trips to the farm, I find myself in Orillia, on Lake Couchiching, on a tennis court with a girl. As we play a bastardized version of tennis that only two nine year old girls could play, she asks me why I will be going to summer camp, here in Orillia, in August, not July. I tell her that’s just when I’m supposed to go and we’re both confused because she goes in July yet we’re both here today in May, checking out the place with our parents, to see if we like it. I already do. I like the giant trampoline at the entrance. I like all the tables in the dining room. I like the flagpole, the ropes course and the girls’ cabins, with wooden floors and metal bunk beds with royal blue vinyl-covered mattresses. I love the writing on the walls in the cabins. This must be a place where things are different. Where you don’t have to be perfectly neat and tidy, like at home.
And it won’t even matter that I have the Disease because all the kids have the Disease. And we’ll do our Treatment together in the sun room, and we’ll all take our Pills in the dining hall and they’ll give us three meals per day plus snacks. And we’ll learn canoeing, sailing, swimming, arts and crafts, ropes, wilderness survival and Dungeons and Dragons if we’re lucky.
But for now I am playing tennis with a girl who comes to Camp Couchiching on Couchiching Lake near Orillia in July. And you know you must come in August because you have the Disease but you don’t mention that to her. And at that summer camp, over the five years that I attend as a camper and a Junior Counselor, I will lip-synch Bonnie Tyler’s Total Eclipse of the Heart, meet Molly my first best summer camp friend, meet Gina my next best summer camp friend, learn that CF kids sometimes need oxygen, discover Genesis music, learn to make gimp bracelets, grow to hate loser Rachelle, see my first penis accidentally, touch my first penis intentionally, dye my hair with peroxide, lose my virginity not very reluctantly, eat my first fortune cookie, learn that I want to live in Toronto, learn to canoe and sail and break my nose.
Gina is so cool and strong and funny. Her biggest coup was putting the dead mouse in Rachelle’s bed. What a fantastic and terrible insult. We found it under Rachelle’s bed to begin with and then just stuck it under her sleeping bag--she wouldn't even get her legs on it, she'd just feel it under her when she got into the bag. Of course she was crying when she found it. She said it was her allergies, but we knew. My tears came when they told us we couldn't go to the dance because of what we'd done. That meant I wouldn't get to dance with Jason or Dean and that meant that they'd simply dance with someone else and totally forget about me. But I guess it was worth it, to see Rachelle in such distress.
Gina never even cried when they punished us. And she laughed when she saw Rachelle's tears. But on a bus trip into town I remember seeing, really seeing, Gina fighting for breath. Not in an immediate, panic state, but a regular, trying-to-breath-when your-lungs-are-failing-state. I remember staring, for what seemed like minutes upon minutes, at her neck; watching how that dip between her clavicles pushed in and her shoulders came up fast and furious as she breathed. I never saw breath before. So much effort and so noticeable. It's like when you have a kink in your neck. For the first time in months, maybe years, you actually notice that you have a neck, full of muscles and possibilities and that you use it constantly, relentlessly and now since the kink, when you try to do all you did before it's difficult and noticeable. When I saw--really saw—Gina breathing, I began to realize how important every breath must have been.
Everyday I walked into the physio room at CF summer camp and saw the others sprawled out on their physiotherapy tables—upside down, slanted on angles, or lying flat on the ground, compressors jug-jugging, clap-clapping on their chests, and I knew that they were the others, that I was not like them. I didn’t need my upper, right, lower middle lobes clapped so that the phlegm would come out though you used to do that. I didn’t need to inhale the medication through the mask though you used to do that. I was the healthy one, the one with the Disease, but not really.
I didn’t need to be in the sunroom now, but I wanted to be. It was social hour, really. The tables were lined up, probably 16 on each side, the room was completely made of windows. The best part was the music, blaring from two big speakers at each end of the room. The most important decision was to figure out where you wanted to sit while your physio was being done and then to try and get the best counselor ever to do it. What a dream if Rob or Tim picked you. Counselors grabbed you as you walked in the door, asking, “let’s do it?” And you were a loser if you had to ask them for help. And you were a bit of a loser if the real physiotherapists grabbed you. But that didn’t happen very often unless you were really sick.
During those summers I learned about the music of Genesis—the pre-Phil Collins cheesy Invisible Touch stuff. I heard Peter Gabriel in all his artsy rock-opera glory. The long stories and poetic words, the narcissus was turned to a flower lines and long guitar interludes. Only boys liked Genesis and that made me cool with Dave, the Dungeons and Dragons instructor. The rock-on boy who was cute in a dirty, down-home kind of way. I even had the white tape version of Trick of the Tail. I knew all the words—I kept a red binder in which I had typed every word to every Genesis song that mattered. And I left question marks where I couldn’t understand a line, changing and adding as I learned more about the words.
Once, I was minding my own business, talking to someone while they were having their physio done, and all of a sudden, Gabriel’s voice came blaring, loud and long, and I remember it, as though I were under water, like time stood still. Looking for someone, I guess I’m doing that. And it was a perfect movie moment—one that adolescent girls dream of, where there’s perfection in attention. Where you respond perfectly, right-on to the social demands of all the cool people. I knew that song, it flowed in my Genesis-obsessed blood. As looking for someone blared, I looked up, instinctively to where the DJ sat, and I smiled and got excited and started singing the words and they saw me—Dave, Rob, Tim. And they laughed. A laugh of joy—saying “she’s so cool, she really is a Genesis fan, she isn’t just saying that, she really, really is. In fact she may be more of a fan than I am ‘cause I don’t know all those words.”
Moments of glory. Nothing to do with being a Cystic. Everything to do with being a girl at summer camp, liking boys, wanting friends, being healthy, needing to belong, feeling fine and cool.
Oil that is, black gold.
It gurgles and bubbles, grinds and churns, the way I imagine the oil pools in the Beverly Hillbilly’s TV show or the discoveries under the oil pumps in the prairies on the way to Grandma’s Farm. I hear his lungs bubbling with phlegm and mucous as he sleeps, breathing in and out, shallow and gurgly, breaking through the sound of night time in the woods at summer camp.
I shouldn’t be able to hear this sound because I shouldn’t be in a boy’s cabin, filled with eight boys, sleeping on bunks, a bit younger than I am but all with CF. I shouldn’t be in the bed next to Sean but he’s my boyfriend and when you have a boyfriend at camp you sneak into his cabin and do what you’re supposed to do. We do a lot of kissing. A lot of wet kissing. I know now that Sean was a bad kisser. More spit ended up running down my chin than I could imagine ever using in a lifetime. It dribbled, ran, sometimes into my ears if I was lying on my side, sometimes down my pajama front if I was sitting up. I tried to wipe the dribble up without embarrassing Sean. I tried to wipe it with my sleeve as I touched his face tenderly, or I tried to use my shoulder to wipe it from the side of my face when he wasn’t looking.
This night, as we lay kissing, whispering, quietly gazing into each other’s eyes, all I could hear was a camper’s lungs, gurgling, like crude thick oil, oozing and bubbling, struggling to get out, to go somewhere, as he slept on, oblivious, with his i.v. working and his stomach pump beeping every hour and his cough coming in the morning, to clear away the gurgles for another day.
I felt so far away from that camper, like he had something I didn’t, like he knew something I didn’t. I felt bad that we both had CF but I could choose to sleep in another cabin, that I didn’t gurgle at night, that I had a boyfriend and that I could have the luxury of wiping away dribble from a well-meaning boy who thought he truly loved me and that maybe someday we would grow up to have babies together. I knew things that the camper would never know and he knew things that I would never care to know. I looked at him, guilty of being healthy, and he gurgled back in sleep, oblivious to anything but trying to make it through one more night without having to go on oxygen. I wiped more dribble away and quietly held on to all that was normal in that cabin.
I often wondered what I was doing at a CF camp when I wasn’t really sick. I didn’t do physio any more because the Doctors said it wasn’t helping at all and I had absolutely no physical restrictions. All I did was take some Pills to digest my food. I helped other people do their physio. When others coughed I waited patiently for them to finish and then continued talking. When year after year we came back to summer camp in August and figured out who died during the year, it wasn’t me. I said, “oh really, isn’t that sad,” or “I didn’t know she was so sick” or “yikes, that’s bad.” I felt guilty for not coughing, for not going in the hospital, for not having thrombosis or a GI tube. I felt guilty for being so healthy and normal.
Normal is as normal does so I began to hang out with the normal kids—the ones without CF, the ones from rich neighbourhoods in Toronto, who wore Bass penny loafers, Benetton rugby shirts and Polo tees. Forget the yellow-toothed, coughy, low-energy Cystics. I could make the transition. I had just the tiniest amount of CF in me so that they’d feel they have to hang out with me, but not enough CF that they’d think I wasn’t normal.
I remember when non-CF Sara asked me to cough up my phlegm into a Kleenex and show it to her. And I did it and she over-reacted and we all laughed and I was in. Not in a laughing-at-her way, but in a real way. And I kept some Cystic friends, just in case, Beth recently married and Mindy has kids and Molly dead as a teenager and Gina also dead. I was a fence sitter. But with two feet hanging on the normal side.
And years later, at a Day for CF Adults at the national meeting of the Canadian Cystic Fibrosis Foundation where I am Editor of the Canadian newsletter, I remember the Chair of the Committee, I remember Bill I just got a call saying that he died on Tuesday morning talking about survivor guilt. About how, after a friend dies of CF, we think to ourselves, well, he did this and that, and I’m not like him because I do this and that, and we feel thankful that we’re not dead and we feel hopeful that because we were different than him we won’t be dying anytime soon. And then we feel guilty for thinking this. Guilty for this, guilty for that. And then we put it away. We learn to carry it as gently as possible.
In the middle of the winter, when camp is long over and school is in full gear, we have a day-long reunion in Toronto at an old nursing school. We meet for fun group games, food, pop and memories. And even then, as a healthy energetic Cystic I know the difference between me and the others—that they are sick, tired, and maybe won’t return next summer.
Rachelle, the girl with the dead mouse in her sleeping bag, sees Charmaine in a wheelchair, wheeling about with an I.V. tube and an oxygen tank, and I know not to say anything, to just pretend like nothing’s different, like when you’re skinny and you’re around someone who is fat, so I act like nothing’s different, we’re all just hanging out and she just happens to be in a wheelchair and her breath is shallow and her smile forced, and Rachelle says to her “oh my God, what happened?” and Gina slaps her on the arm and, scolding, says her name and we are all mortified and Charmaine giggles, rolls her eyes and doesn’t say anything and we finish our fun and games and I wonder today how I would have handled, back then, that bumbling, honest, socially inept question. If I would have said, sarcastically, “what do you think happened?” or if today, if someone asks me that question in a polite, socially acceptable way, at a dinner, what will I say? “Well, I’ve become ill, with the Disease, my lungs are failing, but I still have so much to do and say so let’s all just pretend that nothing’s different. Just for now.”
an unselfish gift of giving and commitment
genuine concern for youngsters
unselfish dedication and love for children
Gina was rude, obnoxious, intolerant of stupidity, harsh in her words, robust in her laugh, fun as hell, but not patient, kind and sweet when I knew her. For my month of Gina every August for four years, she was none of those things and that’s why I loved her. After reading her obituary I realized that people see others so differently from each other—there was no one way to know Gina. Her mom had her memories, the obituary writer had hers and I had mine, as contradictory as they might have been, they were all part of Gina and her memory and who she was in this world and the stories people will tell about her. All valid and revealing. I sometimes wish I knew about the kind and sweet side of Gina, hoping that isn’t a lie. The way we only say nice things when someone is dead, as though dying, in and of itself, is a noble accomplishment for which people should be considered better people than they ever were in life.
I’m the only one left. In this picture of girls at CF summer camp I’m the only one left. Molly, the one on the left, was my best friend. She giggled a lot. We grew apart, even after I visited her in Toronto. She died many years after summer camp ended. The girl on the right was French. She didn’t say much. I think she died first, right after this summer. The girl in the back, taller, was from Britain. There was a whole cabin of girls from Britain—not as healthy as those of us from Canada. I’m the only one left. The rest are gone, swipes of white-out across their names in my address book. Painted away, not to be called or written to again, alive in memory only. I want my kids to go to summer camp. But I don’t want them to have to count the casualties.
I’m the only one left.
how long how long how long how long how long how long how long
There’s a 1 in 25 chance that a person is a carrier of the CF gene. There’s a 1 in 4 chance that when two people who carry the gene have a baby, that baby will have CF. There’s an 80% chance that you’ll die before you are 35 when you have CF. There’s a 90% chance that you will spend most of your life on some sort of medication. There’s a 70% chance that you will spend at least $20,000 a year on medical costs. Someone once told me that the only statistic that is true is that 100% of statistics lie. I’m not sure. I’ve now seen too many people die before they’re 35.
Unlike the carefree summers, the winters were long. They were not the fun times of summer camp, or the roller skating along Fraser Crescent. They were the times of screaming into pillows. Pounding the bed with rage. Crying myself to sleep.
Adolescence in small town Northern Ontario. The boredom of the weekend when there was no other place to ‘hang out’ except the Dairy Bar. The boredom of the school dances, the same boys with the same girls every time. How did I pass all that time? There were no outings with my parents, no parties or activities to go to. When I could borrow the car we went bowling or to a movie. It was 45 minutes to the big city, to fast food restaurants, theatres, bars, malls, anything and everything. If I jogged I felt the whole town looking at me. If I went for a drive everyone would know it was my car. If I dated so and so it would be known by all.
Actually, there was no dating. It was meet, fuck, break up. Where would you go for a date? Where would you hang out? Each other’s houses, the mine pit, the dumps in the back seat of the car, doing it, quietly, cleanly.
I wanted to scream, to pull out my hair, have my head explode with rage.
Actual, true record of memory:
December 29, 1987
New Year’s Resolutions—no swearing, be lots of fun; no bitchy complaining, get more important clothes, appreciate friends (all), amazing summer, get along everyone, take it cool with men until university (no one nighters), love myself, conquer math and English and History, posters (cool) for room, less clothes, better with family quite a full plate, don’t you think little one?