I lift my Little Mermaid pyjama top and search my skin for fur, claws on my hands and feet. Something‟s up—my six-year-old body is going wacko. I saw a movie about a man whose body started doing all these weird things and then he howled at the full moon and then he grew fur and then he ate his whole family in one mouthful one night and didn‟t even swallow—
Jaret, five years old, leaps off the arm of the couch and cannonballs onto a stack of pillows on the floor.
“What are you doing?” Jaret points his plastic sword at me, in the process of stretching out my bellybutton.
“Just checking for fur.”
“Oh. Are you still tired?”
I want to be Michelangelo in their game, the nunchuk-wielding ninja turtle who says “Cowabunga!” but they make me April O‟Neil, the wussy reporter. My frequent sojourns to the couch can be easily explained—she‟s just on assignment, covering a story.
“No! I‟m good! Give me those nunchuks!” I lift my leg for a side kick and fall flat on my face into the stack of pillows, dizzy from exhaustion. None of us can see the disease yet but it has been triggered. Severe ketoacidosis has flushed the flesh from my bones; cells can‟t absorb glucose into my tissues so it builds to toxic levels in the bloodstream. My body is slogged with fatigue, a foggy feeling sinks into my brain and takes up residence, redecorates—thick and tired and sore decor replaces the energy and giddy colours of childhood.
I have a stitch in my side. What I think is a muscle pull from a lapse in my ninja training turns out to be the whine of my failing kidneys.
“You need to cover another story?” says Jaret.
“Guess so,” I mumble and lie back down.
The boys yelp and hit each other with plastic weapons, and I curl up like I house the biological clock of a seventy-year-old man. I wrap a blanket around my skinny body, the bones starting to show pressed against my skin. I am always cold now. Grandma Nick knits me thick
sweaters I wear on summer afternoons and mittens that I slip on at night when everyone else is asleep.
“You look tired,” says Jaret, poking me with his plastic sword. “Maybe there‟s fur on your back. I‟ll check.” He climbs and inspects my back for new follicles. “You‟re just sick, maybe. This boy at school had the flu and he sneezed and there was boogers everywhere and everyone yelled and they were all green!” Jaret‟s blue eyes are wide beneath his mop of red curls as he looks up my nose for verification.
“My head hurts,” I say and close my eyes.
Jaret unwraps the silk handkerchief from his forehead and tucks it over my eyes. It smells of Mum‟s perfume. My tummy makes a loud gurgling sound that ends with the whine of a wounded animal. Every time it cries out, I lift my shirt, pat the little trail of downy fuzz around the belly, and wonder if there is something lurking inside waiting for its moment to jump out. Jaret giggles and pats my tummy with a small hand, pokes the skin so his fingers leave round white imprints around the belly button.
“Sounds like a bear,” he says and growls back.
The boys return to their epic battle and I sleep, waking only when my muscles burn a strip down the side of my abdomen in hyperglycaemic brushfire, or a wayward plastic nunchuk bonks my prone frame.
A Teenage Mutant Ninja Turtle action figure on loan from Jaret stabs the sink in the bathroom with its sword. Mum sits on the edge of the bathtub and rubs my back as I hold my head between my knobbly knees and stare at the bottom of the white plastic bucket. She spells out words for me, fingertips lighting on vertebrae. Happy. I love you. Sick.
“We need to go to the hospital and get some blood tests, and if they come back yes, then we have to go stay at the hospital for awhile.” There is a slight pucker at the center of her mouth where her teeth bite the back of her lip. Dad taught me one night while playing Gin Rummy that this is her tell. “You just watch,” Dad said. “Study a person‟s face when they go to play. Not the things they want you to see. The things they try to hide.”
Mum takes me to the hospital, where scrub-wearing strangers speak slowly and stick needles in me. I squirm and jump to escape. Mum holds me down, looks into my eyes. “You need to sit still. We need to figure out what is wrong so we can fix you.” Pucker at the center of her lip. I squirm more.
“You‟re being very brave,” says the nurse.
She‟s lying, but I sit still, tired from struggling. Mum holds my hand. Her fingernails are all bitten off.
They take my blood.
The results are yes.
The nurse takes my blood with a soothing smile on her pretty face, which I memorize for future litigation purposes. False imprisonment. There‟s a blur of compressed time. Waiting room music, Can’t Get Enough Of Your Love by Barry White, electronic disco beep of monitors. Squeak of white orthopaedic shoes, soothing voices and calm reassurance as they stick IVs in my hands and tell me everything is alright when it clearly isn‟t.
“Hold tight luv.” The nurse inches up the sleeve of my pink Rainbow Brite tee-shirt. “Just a couple of tests, then you and your Mum can leave.” She speaks slowly, eerie calm of the eye in a storm. When everything maintains a film of normalcy, but your house is in the middle of the twister, swirling through the clouds and dodging floating packs of mobile homes.
The nurse comes back with a sheet of graph paper showing spiky lines. “I‟m sorry luv, you‟re very sick. We‟re sending you to a hospital for sick kids. You get to go in a helicopter! Won‟t that be fun? It‟s a tiny helicopter so your Mum will meet you there.”
That pucker in Mum‟s lip. She won‟t let them get rid of her so easy. I see her hanging from the helicopter struts, biceps clenching like Arnold Shwartzenegger. The pilots swerve and dip, fly low over towering buildings to scrape her off. She flips into the copter, grabs me under her arm tucked in a roll of tubes and hospital blankets. “See you in Hell,” she says to the stunned ex-Soviet fighter pilots. She lights a cigar, blows a thick cloud of Cuban smoke in their faces before jumping from the copter. She flicks the cigar behind her through the door.
“Noooooooooo!” yell the pilots as the copter explodes and we leave, flying through the sky on a hot backdraft.
“I‟m going home,” I say. The nurse lowers her gaze. My eyes blur, breathing labours, organs shut down beneath the weight of attacking disease. Mum wraps me in her arms, squeezing gently. “Calm down, Meg. Deep breaths.”
Lungs wheeze, collapsing. Mum traces words on my forearm with light fingers.
Once upon a time . . .
I sink into her arms, limbs weak from the sugar sentries goose-stepping through my blood at the command of this new disease. Type One Diabetes. I breathe deep Mum‟s perfume, flowers and freesia that edge out the nostril-burning clean of the hospital. Then the world is black.
The paramedic leans over me in the cramped ambulance, thick treetrunk arms checking connections on IV drips and insulin levels. The Maori tattoos cut into brown bark skin beneath his mouth crease at the sight of my elevated numbers.
“Where‟s my mum?” I demand.
“Upstairs getting fresh air,” says Treetrunk. “We had a change of plans, princess. You get to go in an ambulance, not a helicopter.” Organs shutting down mean it was a gamble whether I‟d survive the flight. The world smells of motor oil and salt.
“Why the hell does she get to leave and I‟m stuck here with you?”
“Such a little girl shouldn‟t swear.”
Mum drinks coarse drip coffee from the ferry boat‟s cafeteria, bolstering insomnia with caffeine. Days spent with me in hospitals has poufed her curly red hair to Medusa proportions and rimmed her bloodshot eyes in black sacks. She rubs her skin in the ship‟s head, a spontaneous paper-towel shower that won‟t erase the stench of sterility and ER disinfectant. But I picture her gallivanting around, sipping from her Styrofoam cup like some debutante broad on a riverboat while I am stuck waiting for her to come back.
“I want to go upstairs.”
“Sorry doll. We have to stay down here.”
“Why? “We have to.”
“We just have to stay down here awhile alright?”
“How many minutes?”
“Because after awhile you can leave.”
Nuts to that. I‟m leaving now. I will not take this paediatric snuff job without a fight. I yelp at the bite of IV drips in my hands.
“Don‟t do that sweetie, there are needles in there attached to your IV lines. You don‟t want to rip them out.”
Oh yes I do.
“Don‟t even think about it.” Treetrunk pushes me back with a hefty hand. I think if I really am turning into a werewolf that he is next on the menu. He reaches above my head and grabs a black teddy bear in a blue tee-shirt. “Here, this is for you.” He winks. Every time I am in an ambulance for the next ten years, I will be given a similar bear, until I have a teddy army. Dozens of black button eyes shining in wait for my command to spring me from the ambulance and march on the Pentagon.
“I‟m squeezed too much. I want to leave.”
“You will, you will, it‟ll be alright,” he says absently. He tucks the bear beneath my immobile arms. He pushes a button and I feel cold drips course through my hand.
“It‟s not fair,” I say.
“Life‟s not fair, princess.”
They wheel me into the cacophony of the sick, lying flat and folded beneath tight straps and stiff starched sheets. My entourage circles the metal struts of the gurney, hands gripping tight as if afraid I‟ll try to bolt, a six-year-old fugitive on the LAM from the ICU.
People in white coats ask me questions. Stupid ones.
“What‟s your name?”
“Do you have a Mum?”
I point to the fringe of red hair bobbing over Treetrunk, steering the gurney around hairpin turns. There is a big bureaucratic racket and I suspect all the doctors, nurses, and orderlies have a big choreographed dance routine that freezes when I turn my head to catch them. There are cries and the fringe of red hair disappears and passes out on the floor from exhaustion.
“How old are you?”
I should know. I don‟t know.
“Do you have a Mum?”
I don‟t know.
“What‟s your name?”
“None of your business,” I cry, confused.
Treetrunk parks my ride to face the hospital wall, walks to the administration desk in a flurry of white coats, charts and tubes. Smiling teddy bears and rainbows on the walls spin and whirl before my eyes.
Mum leans over the gurney and I‟m relieved she‟s still here, still part of our impromptu tag team.
“Lots of questions,” I say.
“They want to make sure you don‟t leave. That you don‟t slip away.”
“Where would I go?”
Mum squeezes my hand, careful to avoid the lines and tubes between my knuckles. She squeezes tight. I tag out.
They are the equivalent of lifers in this ICU Big House. My roommate and her mother circle the halls with authority and know everyone by first name. They get fresh fruit on their meal trays instead of bruised cafeteria stock. The girl tells me your sob story is your ticket. As good as cigarettes in prison for getting stuff.
“My uncle gave me a new doll when he visited „cause I told him I had to get some blood tests. Tell them you almost died cause of that diabetes thingy.” Her eyes are wide. She covers her
blistered skin with a thin blanket and gives me a hug that is just hands and elbows, no embrace—the way she has been taught by her doctors. Our tubes get crossed and our mums must move in to untangle us.
The girl has bright red hair the colour of strawberries left to mush in the rain, with a matching rash on her back. The rash walks on blistering tiptoes from the base of her neck down her back to the tops of her thighs, physical manifestation of the unknown autoimmune disease crippling her body.
Mum barely finds the strength or inclination to change out of pyjamas in the morning. My colourblind fashion-victim dad sends her changes of clothes long banished to the cobwebbed recesses of the closet. The polka dot, plaid, and bellbottoms he sends her are bringing disco fever to the ICU.
From beneath her bed, my roommate pulls an indexed plastic container filled with cardboard, felt pens, scissors, glue, ribbons, beads—pure amphetamines for six-year-olds. I draw a picture of five people in front of a house on fire on a piece of orange construction paper. All five people have stars on their foreheads: my interstellar, combustible family.
“That‟s weird,” says the girl, pointing at the star on Jaret‟s curly melon.
“No that‟s just Jaret. But he is weird.”
“Can you draw me?” she asks.
“Why don‟t I get a star? Draw me one too.”
“It‟s just for my family.”
When I was four years old, I popped a wheelie going down a hill on my tricycle and fell on my face screaming, blood coursing from the gash on my forehead. Now I have a tiny dent in my forehead where I hit the asphalt. Every human likeness my fingers sketch bears a forehead marked by my twinkle-cut brand.
“Well I have this,” she sputters, pointing to her scarlet rash, rough and chafed as if rubbed with a cheese grater. We go to great lengths to outdo each other in these battle royales of illness, germ smackdowns. To the victor go the bragging rights in our quarantined universe.
She always wins.
“Come on! Gimme a star, I‟m sick!” she says.
I relent, marking her likeness with a star on the forehead. Our mums sit erect in cushioned chairs against the wall, reading outdated fashion magazines and trying to keep thoughts of juvenile mortality at bay while learning “How to Get Fab Abs for a Hot Bikini Bod!”
My roommate shuffles the stack of cards on my end table. Sorry you’re sick. Get well soon. Lean-to lettering poking out behind crayon sketches of upside-down smiles, rainbows, and more than one evil-looking clown. She asks if she can spruce them up with some glitter and ribbon. Her mum takes her down to the Gift Shop where they buy stickers and gel pens. I sulk. When you are there as long as my roommate, the cards stop coming. When you are sick, you get better. People don‟t like to acknowledge that sometimes there is an entrance and no exit. They force themselves to forget.
My roommate returns and gets to work sprucing up my cards. We fall asleep elbow-deep in glitter and non-toxic glue.
Voices float through the room, muffled as the quality of sound underwater. Mum‟s hands press over my ears; I move to brush them off but the IVs bite and sting my hands.
Then the screams start.
My roommate wails. Her glittery hands and forearms writhe in the air above her bed. A team of night-watch nurses and doctors swoops into the room like scrubbed superheroes. They are rough with her, programmed for necessity rather than compassion or reassurance. She would see right through it at any rate, with acuity foreign to most grade-schoolers. Her mother files behind them from the room, the plastic container with craft supplies tucked beneath her arm.
They don‟t come back.
In the morning, Mum and I munch on breakfast and I‟m mad my roommate got to leave.
I‟m a patient so long at this point that I attend a school for sick kids. Doctors and nurses keep an eye on our vitals through glass walls as we play, close facsimiles of normal children but for the shaved heads, IV towers and needle marks. Mum holds my hand and grasps my IV tower with her other hand, dragging it behind us as we walk down the fluorescent-lit corridor.
My former roommate rounds the corner on the other side of the hallway. She sits in a wheelchair pushed by her mother, red hair in orderly plaits, biting into a crisp, spotless ruby
apple. I wave. She doesn‟t wave back. Her arms are scrubbed clean; no more glitter. She had a spinal tap in the middle of the night after the unknown illness attacked the organs in her body, but they still can‟t figure out what is crippling her.
The doctors, nurses, people who walk these halls and know the minutiae of illness; the ones who fix what‟s broken, the junk that falters in these stupid mortal bodies; the ones who seek to paint the walls and dispositions with sunshine and rainbows—
They can‟t fix everything.
They can‟t fix her.
I wave again. Her hands clasp in her lap, folded around the apple core already turning brown in the sterile air.
This is the last time I see her. I can‟t remember her name.
Mum squeezes my hand, forgetting for the moment about the lines that pierce the skin across my fingers and drip into my veins.
“How come . . . how come only some people get to leave?” I ask Mum.
She squeezes my hand tight.