Reinventing Emma (9 page)

Chapter 14

From Dreams to Reality

As my family sat around waiting and hoping that I would wake up, where was I? I was caught in a deep sleep, haunted by vivid dreams …

I'm standing in a spacious mezzanine-like room. The only thing in it is a large soft white bed almost floating on the carpeted platform. I'm standing on the spongy surface easily, both hands free. Steps lead down to a shiny white lino-surfaced corridor. It looks cold and hard. But I stay where I am. I'm content here. The sun beams through the panels of glass that enclose the room. I walk to the bed and, after kicking off my towelling slippers, I jump into it and snuggle with my teddy bear, warm under the covers. Brain surgery isn't so bad, I think, drifting off into oblivion.

I wake in a different room with no natural light. I'm lying on a cold, hard metal table and my body throbs.
Something isn't right.
Suddenly, noisy white-coated people surround me. I can only see their torsos. They seem distressed, their white arms move too quickly around me for my relaxed state. Their voices collide and I can't make out their words. I try and tell them to be quiet but I can't. I'm too tired.

I feel them move me. At the same time, a lightning bolt of pain strikes through me and my eyes are forced wide open. I try and jolt upright but my body seems restrained. A nurse slowly raises a thin metal pole vertically above my torso. She suddenly lowers it violently, piercing through the skin and puncturing my chest. Blood spurts onto the blue curtains around me. The red fluid leaks relentlessly from my stomach, gushing. Gushing so fast, too fast. I need to stop it. I move the teddy bear I'm clutching and try to mop up some of the fluid. The teddy's brown soft fur is now wet and dark red. Someone help me! I plead, but the white-coated people just stand around my bedside, arms crossed, watching me struggle and bleed.
Can't they see that I need help?
I lie there hollow, the pumping red fluid leaking out of me. I am helpless. Naked. Vulnerable. I am going to die.

A bright light enters the room and I seem to vanish, evaporate into the white starchy sheets. I soon emerge in a new, almost exotic landscape, fertile and moist. The harsh antiseptic stench is gone. Now gorillas replace the white-coated people. I feel strangely at home in this more natural landscape. The pain dissipates and I no longer feel exposed and vulnerable, even though I appear to be in an animal enclosure. Throughout my life I'd visited zoos and sanctuaries and as a child had been warned, “Don't go beyond the viewing areas.” In my dream that childhood danger seems a myth. In this cage I feel so safe and accepted. My close family are let into the enclosure and given time to learn my language. I am excited to give them a tour. Others who step into my world are forced to adapt. There's a great feeling of relief being in a realm free of beeps and tubes and judgement, surrounded by gorillas.

I'm motionless but the world spins around me. Then suddenly it stops and, like being double-bounced when jumping on the trampoline, I go flying through the air, down, down, down. Falling. Out of control, I seem to go faster and faster and it gets colder and colder. Freezing. It becomes darker. Grey and black shades replace the warm colours of the gorilla world I've been taken from. I land with a thud on a cold surface, in a concrete box-like room. All of the walls are identical, no windows or doors.
Which way is up?
There are no voices, only the smell of moldy dampness, and it's bitterly cold. I'm terrified, but too tired to invest my energy in to fear. I curl into a ball on my side, and I sob. I feel completely alone and forgotten. The sound of my sobbing echoes off the walls even after the tears have been milked out of me. I am left here to die.
This must be hell!

Later my auntie and uncle join me down in the coldness, adding a glimpse of warmth. Although colour is absent from the room, now shimmering light seems to bounce off my auntie's wrist. The glare hurts my eyes. At the same time, the beam of light keeps me awake and feels like it's preventing me from falling further into the coldness.
Are they saying goodbye? Why aren't my parents here?

With a shock I realise that this cold room is actually a crematorium, a chamber for dead people. They think I am dead but I am still awake. I am alive. I just can't move to alert them. I'm trapped. Three astronaut-like suited people abruptly appear and move my corpse onto a metal stainless-steel bench on rollers, a bench that extends into a dark tunnel that leads to a hot furnace. Panic and terror engulf me. I have minutes before I will be burnt alive.
I'm still alive.
Frantic to escape this torment I try to move again, to signal that I am alive. I instruct my stubborn body to blink but my eyes won't close, they feel probed open.
How do I tell them that this ‘corpse' is only masking the life trapped beneath?
This is not how I thought my life would end.

The three strangers stuff my body into the dark tunnel, like shoving overflowing toothpaste back into a narrow hole. My body is detached from my head. I am an observer of this torture. My head feels weighted, bulging. I peer inside my skull to see why. Clambering around and rudely invading my headspace are two people fighting. They're wearing matching lycra suits, the tiny female dressed in white and the male in black. As they leap and flip around the pain is excruciating. To me it is so clear that they don't fit, but they scramble around as if they had oodles of space. I watch from the sidelines. Their every move leaves a shocking bolt of pain. In their ‘fight' intermission a mini nurse in white appears between them and holds up two outfits. One is black and plain, the fabric thick and rough. I run my index finger and thumb along the skirt's hem. It is lined, too,
surely too hot for a coffin?
The other dress is bright yellow with colourful dots scattered over the silky thin fabric like hundreds and thousands. “This one's perfect,” I say. The nurse holds up the left hand of the white-lycra suited person and hands me the bright garment. The fight is over and the white girl has won. The black character is sprawled on the ground, defeated.

Suddenly, the grey concrete surface beneath me moves rapidly upwards. Up, up and up. Almost in fast-forward motion, cartoon-like. As the upward momentum stops, I fall back on a soft, warm surface and large hands pancake over my body, preventing any jerky motion. Calmness.

“You're OK, the operation went well,” a voice says. I try to open my eyes.

Many people have asked me how I can still recall these dreams today. My reply is simple. They were so real and so traumatic. It's almost as if my brain was trying to make sense of the horrific operation.

Looking back on those dreams they seem full of metaphors. The warm white bed at the beginning was the comfort of sedation taking over. Maybe my brain was reassuring me that all would go as planned and I could just relax. When the scene abruptly changes and I find myself among the white-coated people, it is almost as if my brain is alerting me to the obscure and panic-filled danger ahead. Or was some part of me aware of what was happening in the operating theatre?

The swinging motion I experienced in the gorilla enclosure could have been my body adjusting to altered balance. Maybe the gorilla's incomprehensible language made my gibberish seem normal?

In those eight days of coma I was obviously aware of some things around me. I dreamt of my aunt and uncle and found out later they had been there saying prayers at my bedside and that my auntie was wearing a bright bracelet, which matched the bright light I saw coming from her wrist in the dream.

The fight between the black- and white-suited figures and the choice between the two garments do seem to symbolise some moment when there was a choice between life and death. The white figure winning and the selection of the yellow dress over the coarse coffin fabric perhaps meant that I chose life.

These coma dreams were like no other dreams I've ever experienced. They still haunt me day after day and still elicit nausea years later. I don't know if they'll ever fade.

In my attempt to banish these nightmares, months later I asked my therapists to jot down my recollections. In doing this I was attempting to differentiate them from reality. Even so, I couldn't decipher which realm I wanted to be in – they were both hell in their own way. The life I woke up to after those eight days of fantasies was in many ways harder to make sense of than my dreams.

Chapter 15

Waking Up

I'm awake internally but my body won't budge. I try to stir it again.
Move!
I command. I want to yawn and stretch out long and then turn onto my side in a warm foetal position. But I lie still.
How do I instruct this body?
It feels detached from my thoughts. It throbs, but I don't know where this awful sensation is coming from. In fact, I can't figure out where my body starts and ends. The pain seems to morph into the hard surface I'm lying on. It's an endless blur of agony.

“Wakey-wakey,” a chirpy voice says loudly in my ear. I can feel a gush of warm air on my skin. What's frightening is that I
am
awake but my lazy body just won't shift! I feel like a kid again, hiding under my doona, but this time it's not my choice. My skin feels like it's thickening, suffocating me. Noises seem muffled and distant, as if I'm submerged under water.

Suddenly a bright light breaks through my impenetrable skin. The darkness turns into a glowing orange blur and my eyelids are probed open. “See if her pupils are dilated,” a male voice commands, shining a pen torch in my direction. An unwanted beam of hot, stinging, yellow light enters my vulnerable body.
I'm not ready to be found yet.
The light beams from side to side, disco-like. My pupils are exposed like a deer in spotlights, vulnerable, immobilised and captured.

I gasp for breath. All I can see is a plastic dome blocking my blurry view, an oxygen mask. I had hoped to see a familiar face, or recognise a voice, but when I try to free myself, the clear plastic mask is held over my face. I can't move my arms to pull it off or squirm free.

A distinct flavour of stale blood coats the inside of my mouth. There's a disinfectant smell so strong I can taste it. These awful sensations are the only bridge for me from the terror lands of my dreams into what seems to be reality.
Where is this blood coming from?

“Good afternoon, Emma,” a deeper voice joins in my wake-up call. Then the voices exchange medical notes about my status. I want to join in their conversation. This discussion is about me after all. Shouldn't I be included? Has my operation gone OK? But their voices fade and once again I'm alone. I opt to sleep, to rest again to make sure I muster up enough energy to move or open my eyes for my next witness. The darkness has a heart beat.

Days pass and I drift in and out of this state, shifting from the internal terror of my dreams to awareness of an outside world I'm unable to communicate with. Neither of these places is where I want to be. I can't understand where my family is. I'm distressed and so confused by this.
I want my mum and dad!

“Em, are you awake?” There's a voice to my right and someone is stroking my fingertips gently. I try to open my eyes, to let the light in. I don't want to be in this dark realm alone anymore. Through the slit in my eye I see blurred figures … fuzzy moving images. They spin around me, and a loud beeping blasts through my body. I want to tell them to stop moving and to turn the volume down. But my efforts exhaust me. I welcome the darkness and shut my eyes.

Bec remembers …

One day she woke. I want to say it was months after, years perhaps, but I think it was just over a week. How she was to begin with scared me a lot. She made funny noises, couldn't swallow, her eyes rolled different ways. Somebody I could understand completely for as long as I remembered was underneath it all – I knew that – but at that point I felt like I'd be forever digging to find her.

When I muster the effort to keep my eyes open, what I see is not what I expect. The room is tilted, like a boat, and spinning like a fast ride I'd once been on at the Melbourne show. Images are double. Two of everything. Cloned machines and two tubes sprout from my arm.
I have been a twin for 24 years; maybe it's my turn to see two?
Like a disjointed slide show, the blurry images gravitate around each other. The world is moving but I am still. Tubes grow from my body like roots from a tree. The bags of fluid connected to these tubes are the only moving things. I can feel the invasive cold fluid travel around my blood stream. I taste blood. I smell fear. Everything to do with this body is now foreign.

Mum's diary june 24th 2005

We went down to see Em at 11am as usual and were so excited to hear that she was awake and they were removing the tube that was draining fluid from her head. She squeezed our hands and tried to open her eyes and to talk – a huge improvement on yesterday! The staff were so excited, and I tried to be, but seeing her half awake and so frustrated as she tried to tell us things was so difficult. I have to balance that with being grateful that she is alive and improving.

The subsequent days pass slowly, too slowly. Actually, I don't know if it is days or weeks. My new routine involves being cleaned, rolled and fed by a stranger in darkness. Poked. Prodded. Pinched. Occasionally I see the familiar face of a family member, but their short visits only seem to highlight the distress I'm in. I try to speak to them behind the mask, but what comes out is just muffled and only seems to elicit frowns.
How can they expect me to speak clearly with a plastic thing over my mouth? Take it off! Why are the lights off? Why are they whispering?
They leave before I can murmur back to them. I need to tell them what's going on so they can get me out – make them see that I need to escape this hell I'm trapped in.

Noise is torture. The constant humming of the fluorescent lights is soon joined by the collision of rubber soles with the lino floor. Each footstep causes a high-pitched scream inside my head
. Why do I have no idea which direction these sounds are coming from?
I can't anticipate their direction because my eyes won't budge sideways and my neck won't turn. The nurse has positioned my head in a downward direction and all I can see is lots of feet below the curtain at the end of my bed. The ripping sound of the curtain, as the thin, blue material is gathered along the silver track above my bed, penetrates my entire body and reverberates painfully in my head.

Every hour, the curtains are drawn, two staff enter and then, “on the count of three” I am turned. I feel like a tangled chain of kabana at the butcher. Although I'm just being rolled over in standard hospital style, to me it feels like I'm continually being spun around and around and around in a hammock. “Enough!” I inwardly shriek. “This is too much.
This is not fun.
” As a kid on a swing I'd loved this kind of adrenalin rush, the grey metal chains twisting and spinning me. Now it is terrifying and I feel permanently out of control. After each turn, the dizzy blur doesn't ease, and the double images spin around me in constant motion. I close my eyes but my world keeps spinning.

Mum's diary 25th june 2005

Em looked so sick today. Her eyes were wandery and her mouth and tongue were worrying her. She just didn't look like Em! Dr Chia is pleased with her, though, and says the speaking will come. When I asked about that he said, ‘We need to remember she has had a major operation. Only a handful of surgeons in the world would've operated on this AVM and it was deeper and more complex than they thought'. In fact, he said she is very lucky to be alive! Although she has a facial palsy, he says it's only partial and will probably go with time … Kate just burst into tears and we all felt so depressed and sad for Em, despite Dr Chia's assurance. It just breaks your heart to see her so lost and sad and helpless. If only she could speak to us and tell us how it is for her but maybe she's not remembering too much of this. Hopefully not.

White-coated figures surround my bed, one with crossed arms, the others holding pens and clipboards. Black stethoscopes coil around their necks.
Do they ever use these or are they just to show their status?

“What day is it Emma?” a deep voice asks.

In this darkness I can't even differentiate night from day. I have no idea. I try to say that but they don't understand me. “It's Tuesday today, Emma, and it's a cold morning outside,” he explains, in a slow monotonous tone. There are no windows to glance out to prove he's telling the truth about the weather.
Why don't they show me? Take me outside, give me some fresh air and let me see for myself
. At the same time he moves to take my pulse, to find the bloodstream that's apparently keeping me alive. His fingertips tap my wrist firmly; his nails begin to pinch my skin.
Ouch! How do I tell him that it hurts?

The questions posed now become commands. “Now can you squeeze my hand, Em?”

“Blink.”

“Wriggle your toes.”

I do as they say but there's a delay in my ability to perform these actions. They leave my bedside before I have a chance to show them that I understand. They're giving up already.

Mum's diary 27th june 2005

Today Em was up in a chair when we arrived. This was good as her chest mustn't be congested and she's been lying down for so long. Still she is unable to talk, poor kid. Having double vision as well is just awful and yet they are really happy with her progress. We only stayed a short time because she was so tired. Her right eyelid doesn't close properly so it's hard to tell when she's asleep and I hope they might tape that tonight.

I'm still in intensive care.

“Now Emma, the doc says that to get out of here we have to get you drinking, get your fluids up.” A nurse sits next to me balancing a tray on her lap with a spoon, a plastic jug and a cup. She drops two spoonfuls of a thick, white substance from a large jug into a plastic mauve cup. I choke unless all fluids are thickened. With a teaspoon, she brings it to my mouth. I'm confused.
I'm meant to drink to get out of this prison, but this isn't fluid.

“Open your mouth, Sweetie,” she instructs and opens her own mouth wide hoping that I'll copy her. The teaspoon is pressed against my lips, waiting for permission. I tell my brain to widen my mouth but it refuses to cooperate.

“Open wide,” she repeats impatiently.

I feel like a toddler refusing to eat. She forces the teaspoon between my lips and scrapes the tasteless metallic clag-like contents against my teeth. It pools in my mouth and then seeps out, the clear muck dangles. The nurse wipes me, saying, “Let's clean you up, Sweetie, it's all over your chinny chin chin.”
Great, I'm drooling and I can't even tell. I can't swallow this stuff. Perhaps if she tasted it she'd know why.

Dad's emma update 25th june 2005

We've had a few roller-coaster days with Em's level of awareness increasing to the point that they could remove her endotracheal tube. This was great news, as was the news this morning that her brain scan did not reveal any new problems. However, whereas she was so “peaceful” when asleep she is now a little restless and confused as the effects of her brain swelling and the prolonged sedation are more apparent. It will take a few days before she is really “awake” and can talk to us. She does know that we are there but you sense that she is struggling to respond to our questions about how she is feeling. This is all distressing for us, especially Bec who, of course, can sense what her twin feels.

Mum's diary 28th june 2005

We came back this afternoon but didn't stay long. Em either gets too stressed trying to tell us things or too tired and we can only go in two at a time anyway.

Each visit from my close family brought warmth and familiarity into the stark environment. But I couldn't understand why I only ever saw one or two of them at once and why they only stayed for a short time.
Have they given up on me? Do they have something better to do? Why do they look so glum?

Their complexions were greyish, the worry zapping any colour. They seemed upset. If only I could move to comfort them, I thought. But it was they who were trying to cheer
me
up. My sisters paint my toenails bright pink. The colour is a welcome contrast to the cold whites and greys of my surroundings. I know, though, that I will need something way brighter than nail polish to fully wake up this body and help me on my road to recovery.