Reinventing Emma (7 page)

Chapter 10

A Date for the Big Day

On the 1st of June 2005, Dad and I flew to Sydney to see Professor Michael Morgan. He was one of the world's most experienced surgeons in this procedure. Hopefully he would be prepared to operate on me. Feeling tired and anxious, we sat in silence waiting for
the man that could save my life
to see us … I was cold, freezing. I didn't know if it was the temperature or the nerves. We both knew that this was the last option. I whispered to Dad, “I hope he agrees to operate.” He just nodded into his chest.

Entering Professor Morgan's spacious room, me limping behind Dad on my stick, I plonk down in the vacant chair. As my AVM pulsates Professor Morgan looks over the scan results he's received from Melbourne. I see his serious expression and his moving lips as he speaks, but I subconsciously block out all sound. I'm relying on Dad to listen and summarise the conversation later. I stare at the presentation, the stats and columns labelled DEAD versus RECOVERED. I don't ask about the likelihood of paralysis. It seems irrelevant. I'd be stupid if I believed he knew. He doesn't. No one knows.

I sat in that cold room with two men, focusing on trapping the tears trying to escape down my face. In desperation I looked around for a tissue. Dad noticed and patted my shoulder with a deeply concerned look. Professor Morgan said, “We will look after you,” and passed me the tissue box next to the plastic brain on his desk.

My tears eventually did escape when he told us that the cost of the procedure would be more than $100,000. This fee included the operation, doctors and private hospital fees. As my case was urgent, it was too risky to wait for a bed in a public hospital. But without private health insurance how would I pay for it? I already owed my parents $4000 for my Africa trip. That was nothing compared to this. There were so many things I would have preferred to spend the money on, like a massive deposit on a house or hundreds of holidays. Instead, I was opting to spend 100 grand to have my head carved, bone drilled and my tiny AVM removed and clipped; an operation likely to leave me dead or with all sorts of deficits like deafness and muscle weakness. Perhaps a wise but dubious investment!

Professor Morgan explained that they would have to mobilise the temporal lobe of my brain so they could move it out of the way to get to the AVM. Seizures could result, though they would initially put me on anti-convulsants to prevent these. This medication might affect my menstrual cycle post-surgery, along with my ability to get pregnant in the future.

How different I felt after that consultation. It took just one hour for all other options to be definitely ruled out. The operation was the only procedure left.
If
had been replaced with
when
and
how much
and
where
. I was on a one-way path and there was no going back. I was petrified.

We left his room and went to the reception counter. “Hi Emma, so you'd like to make a time for your craniotomy with Professor Morgan here in Sydney?”

I forced a nod. She looked at her computer screen. I watched her manicured fingers scroll the mouse. They stopped moving. “OK let's see … our next available time is on the 17th of June 2005. How would that suit?”

I wanted to say, “Let me just check my diary.” Instead I whimpered, “That would be … fine.” Then I found myself sobbing uncontrollably. I could no longer stand upright. My stick seemed to buckle under me. I resorted to draping my exhausted, helpless body over the dark wooden counter. Dad seemed to pick me up by simultaneously squeezing both my shoulders reassuringly. I turned to him and wept into his checked sports jacket.

“It's OK, Love, good that we have a date now.” He patted my back and assured me that I had made the right decision.

I didn't give the receptionist eye contact again, fearing I'd only cry. Dad guided me to the lift and we left in silence.

Chapter 11

So This Is Goodbye

Back in Melbourne I had less than a week to farewell my old life and plan what I could for the immediate future. My
one-way
flight to Sydney was booked for the 16th of June.

Even though I thought it was unnecessary (I was young, I wasn't going to die!), I took my parents' advice and organised to meet with a solicitor and sign my will. While friends were signing their credit cards for their latest purchases, I was autographing my will. My dad and brother now had medical power of attorney. To my parents I just signed over my debt in the case of my death. “Surely, when I die I want to leave something good,” I thought sadly.

That done, I was determined to appreciate the days I had left. My closest friends organised a trip to my family's beach house in Anglesea. They say salty sea air heals wounds, so I secretly hoped it would fix me and, if not, give me the clarity and distance I needed to get things into perspective.

Sisters and best friends three days before their lives changed forever. Em's last trip with her girlfriends to Anglesea, 2005.

On that weekend we girls went everywhere together, our elbows linked. I was scared, terrified to let go. The mood between us was subdued. We'd exchange anxious glances and our eyes were often filled with tears. We tried to distract each other with anecdotes, but they seemed minor considering I was about to be cut away from the group.

For that entire time by the sea I inwardly paced, wondering if it was my last ‘girl holiday'. You suddenly appreciate everything so much more when you realise it may vanish soon.

I had knitted each of my friends a scarf and attached the following note:

Warm hugs
I've wrapped my hugs within this scarf
To bring you warmth when things go wrong
And to bring you sunshine on winter days
As well as to thank you for your caring ways
In each row I have stitched in a smile
It's here for you mile after mile
As we walk together or walk alone
My cheerful thoughts are yours to own
So wear this scarf, full of special things
And remember me and all that our friendship brings
The knitting's not great – there's a hole or two
But it comes with warm hugs from me to you
Love always
Em

For every family member I bought a present to help them remember me. Unlike my Christmas impulse buys, suddenly I had to think of something that encompassed my whole relationship with each person. I chose items that could be engraved with a personal message. For Dad and Pete a silver key ring, for Mum a locket, for Bec a bracelet and for Kate a necklace.

I was surprised when Bec gave me a canvas print she had designed and painted, based on a childhood photo of us with a wheelbarrow of home-grown apples. The words,
Two halves make a whole
, were etched across it. For the first time it really hit me that this wasn't a thing that would just rock
my
life. I would be missed.

Em (L) & Bec homegrown apples, 1986. The photo Bec based her print on years later.

On the night of the 14th of June I had a casual dinner at my parents' home. This was my last opportunity to thank people and to say goodbye. I knew how risky the procedure was going to be and that if I did survive the operation things would be very different. My family knew the seriousness of my situation but I hadn't told my friends and acquaintances.

I wrote in my diary:

People were coming over for dinner – neighbours, netball friends, family friends, friends I'd rented with, school friends, work friends, everyone in my life. The room was filled with people. Sitting, standing, squatting people. I felt so lucky to have all this support. It was raining outside but the number of people and the open fire soon generated enough heat. The night rushed by in a blur. I would end one conversation and start another. I hadn't even spoken to half of the people there and then the next minute I'm hugging them goodbye. It was too speedy. But I guess even if I'd had all the time in the world it would've been hard. What's time, when time feels like it's ending anyway? I think it was hard for everyone to understand how serious this is. Many hadn't seen me since my diagnosis and although I'm walking with a stick, I'm probably looking better than I have for a while. The night was finished. Silence. Eerie silence. The people I cared about had now left. It felt like just me and the leftover peppermint slice.

After that I had only 24 hours left as ‘Em' before surgery. There was no time to waste. Every second seemed vital.

Chapter 12

The Quiet Before the Storm

I arrived at Dalcross Private Hospital in Sydney on the afternoon of the 16th of June 2005. I walked up the driveway from the car park with Mum, Dad and Bec at my side. Dalcross wasn't big and cold like many of the hospitals I'd seen. It was an old house surrounded by manicured gardens. Inside it was even better; green carpet, modern chairs and walls lined with light oak wood. Dalcross didn't have the same disinfectant odour I associated with hospitals.

I was shown to a nicely carpeted room, my own ‘pre-op' preparation space. Vases rather than the typical old jars sat on the oak shelves. A TV hung from the ceiling over my bed-end. The lighting was dim, so much better than the normal hospital fluoro lights that spotlight every blemish.

That afternoon was long. In between the routine blood samples and CT scans my family and I sat in that room and waited. I was tired but too anxious to rest. I felt sick.

“The surgeon will be with you shortly”, the nurse said, popping her head around the corner.

What seemed like hours later Professor Morgan entered wearing his scrubs and a mask draped scarf-like around his neck. He removed his blue shower cap and went about shaking everyone's hand. All I could think was,
These hands will be inside my head in about 17 hours.
I returned his grasp softly, and silently hoped my family would do the same, keeping those fingers intact for my operation.

“How was your trip?”' he asked.

“OK, you know, I guess travelling for neurosurgery isn't that riveting.” I was keen to skip the small talk and get right to the point.

“I guess not,” he said, shaking Mum's hand.

He went on to explain he was having a break from another operation.
This is a break?
I quickly glanced at Mum, who I knew was thinking the same thing.

“I was thinking during my last procedure, instead of accessing your brainstem through your forehead, we'd go behind your ear. There's less chance of seizures and frontal lobe damage that way,” he said, drawing an imaginary line on my skull with his finger.

His reasoning made sense but my thoughts boomeranged back to his initial words: “I was thinking during another operation …” Inwardly I panicked.
Surely he should be not thinking about my skull while he's operating on someone else? Does that mean he'll be contemplating other patients' procedures when cutting into my head? When he's operating on my skull I want his 100 per cent attention!

“Whatever you think's best,” I said. He made it sound so simple.
It isn't a haircut – my brain won't grow back.

“What time will it be? Will I have to shave my head?” I asked anxiously. I had kept my endless worries locked up but they were now seeping out. “Around 8.30am,” he said, casually like we were doing coffee. I want an exact time.

“That early? Sure you don't want a strong coffee fix first?” I wanted him to have a good sleep and a relaxed brekky.
What if he had a bad sleep?
There were so many silly things I wanted to ask …
What if he needed to go to the toilet? Would there be meal breaks?

“It's up to you if you want to shave your whole head or I'll get the nurse to shave behind your right ear,” he said.

“I'd just shave your whole head,” blurted the nurse taking notes. “Easier to manage after the op and then you're not lop sided.”

I wanted to save my hair. I wanted to return to Melbourne as intact as possible. Besides, having a bald head would only make me look sicker.

My escalating fear was only heightened when he introduced his co-surgeon.

“I'll be assisted by my wife, Elizabeth Ritson, during the op,” he said, stepping to his left and straightening his right arm like a boom gate, introducing her. She was tall. I noticed her fine glasses and thick hair.
She needed glasses?
I'd been glad my surgeon was bald, no hair to moult.
Great. And what if they had a domestic during the operation.

My imagination went into overdrive: “Could you please pass me the scalpel,” Prof Morgan might say, holding out his empty right rubber-gloved hand.

“No I won't,” his wife would reply stubbornly.

“Please Darling, Emma's bleeding,” he'd say, his eyes pleading.

“What do I get if I do?” she'd say in a teasing tone.

“Come on, Honey,” he'd say more seriously. He'd had enough.

I just hoped my head wouldn't cop the blame for an unironed shirt or a late meeting.

“Well, have a good sleep and we'll see you tomorrow,” he said, clicking the folder onto the end of my white bed and walking towards the door. “I've prescribed some relaxants for you before the operation, just to calm those nerves.”

“Any for us?” Mum called behind him, trying to joke but I knew she was serious.

He left. I felt as though my head would explode. The AVM and the unanswered questions were smashing around in my skull like dodgem cars.

Later the radiographer wheeled me into his glass-boxed room overlooking the CT white tube that I'd been in earlier when they snapped images of my brain. He showed me the 3D images on his desktop screen. Instead of planning the incisions they'd make by marking lines directly onto my face, they would refer to the bony landmarks on the images of my skull.

“Isn't technology great.” He spun the image around by rotating the mouse enthusiastically.

“Yeah.” I tried to sound equally excited, but knew too well that the clay-rotating image was my head.
What if they entered into the wrong patient file? Clay could be remoulded but my head could not.

“You better get some sleep, Dear. You have a big day tomorrow,” the nurse said from my doorway.

It was late … the night before my operation. I didn't want Bec to go. We were watching
Anne of Green Gables
and it hadn't finished. Anne was still stressing about her red hair. I thought about tomorrow's scheduled semi crew cut. I wasn't tired.

Before Bec left that night I quickly wrote on a scrap of paper, “In the case of death, I, Emma Elizabeth Gee, will donate all my organs.” Bec witnessed it. It was the last thing I wrote before the sleeping tablet finally took effect.

“Wakey wakey, Emma.” A chirpy nurse entered, holding some folded blue and white garments under her right arm and a towel in the other hand. “How did you sleep?” She pulled my curtains open.

I sat upright, but before I could answer she told me to dress in the folded items on the end of my bed. “When you're ready, get into this, Dear, and take out any earrings. Just leave your things there and I'll put them in your room for when you wake up.”

She left, shutting the door loudly behind her. I had 60 minutes until my family arrived. Sitting up slowly I stared at the items of clothing the nurse had left on the end of my bed, my right hand resting apprehensively on top of them. Blue plastic, pull-up knickers; a blue shower cap and a white sheet-like gown. Usually for big life events like your wedding or birthday you dress up. Instead I get to wear these, and have my head shaved.

I decided to dress, get it over and done with. I wrapped the shapeless one-size-fits-all gown around and clasped and scrunched it closed behind me with both hands till I could feel no breeze. I looked in the mirror.
Hardly flattering. Here we go!
I took my pasty body cocooned in this white tent back to my bed and wrote to kill time.

5.59am
…

Dear Diary, Today is the day. It's finally here. I'm sitting in bed as ready as I can be. My back is cold, the stale hospital air is touching my bare skin where the gown parts. I'm terrified, but positive … I just want to get this over with. The AVM is primed and ticking, ready to explode. I'm thankful it hasn't blown yet. No longer do I have to anxiously wait for it to erupt. In a few hours it will be gone and I will be asleep. Whether I wake or not, I'll be free from this time bomb that's haunted me over the last few months.

6.20am
…

Dear Diary, I feel like I'm waiting for a death sentence. But I'm going to live. I am going to turn frowns into smiles. I am determined to help people like I never have. I am going to get the chance to reciprocate all my family and friends' amazing support.

I closed my diary and put it on my bedside table then sandwiched myself between the stale sheets. I lay like a corpse, stiff and cold. I closed my eyes, reminding myself that today's the day that I have been waiting for.

I didn't hear my family enter the room. Normally I could hear Mum's voice a block away, but even she was speechless. They entered slowly, the quiet before the storm. We were all dreading that day.

My body was frozen cold. Stiff with fear. I turned to face them and opened my eyes, finally letting my tears escape. Bec entered first. Mum, Dad and Kate followed close behind.

“Hey Em,” Bec said, unusually softly, tears rising but her pitch remaining flat. Mum saw my expression and quickened her pace. “Oh Em, how did you sleep?” She gave me a tight hug, folding my posture upright.

Initially, I didn't return her hug, scared that if I did I wouldn't be able to let go. In no time every limb of mine is grasped by my family – my feet, my hands, my head. My dad holds my shoulder. I can no longer not reciprocate. I squeeze my hands, wriggle my toes and return Mum's hug.

Dad's the first to break free from this family embrace. He pats my left shoulder and sits down in the green vinyl chair at the end of my bed. He crosses his arms, tight.

Kate perches on the end of my bed, she clasps her hands tightly around both my ankles. Mum holds my hands; her warmness engulfs my frozen limbs. In fact, she hasn't let go since entering the room, her handbag is still over her shoulder.

Bec gravitates from sitting to pacing to the door and back. Each time she gets up the plastic hospital sheets rustle. That and the tick of the clock and the distant buzzes of nurses' bells are the only sounds that enter the dread bubble we seem to all be in. It's almost like if we stay still and silent, we will delay time.

8.30 passes. Dad leaves to buy everyone coffees. Everyone but me. I am only allowed the little white tablets. I need something to fill my belly, there is too much room, the butterflies have become gigantic bats and are rapidly breeding and colliding.

By 9.30 Mum starts pacing the tiny room, “This is crazy,” she says, looking out the door to her left and right like she is crossing a busy road.

“It's OK, Lyn; he'll come when he's ready,” Dad says calmly from a visitor chair at the end of my bed. I wish Dad's calmness was contagious. We make small talk about the weather, the traffic, if the washing will dry, but the conversation is eventually exhausted. Eerie silence prevails.

“What's the time now?” I eventually ask, my voice shaky and high pitched with escalating fear.

Dad responds immediately, almost too quickly. He uncrosses his arms and glances at his silver wrist watch and gently puts his hand on my foot and says, “Close to 10am Em.”

Out of everyone in the room Dad had looked quite relaxed. But his fast response proves that this seemingly calm posture is just a façade. I know he is being strong for all of us; that has always been his role in this family. But now his position is being tested. I nod and gulp, guilty for making him feel so awkward.

We all resume our positions in the room. Bec now moves up to sit near my torso and Kate and Mum's grip seems to only tighten. I need to go to the bathroom but I choose to hold on. I don't want to spend a second away from these people I love.
Separation anxiety is peaking.

When the clock reads 10.30 I know that any minute I'll be taken away.

As if she's read my mind, the nurse enters, saying,

“Are you ready Dear? They'll be wheeling your bed in here shortly!”
No I'm not ready. I never will be.
I think to myself.