Reinventing Emma (2 page)

Introduction

I've been on a challenging yet amazing journey over the past ten years. My life has been turned upside down in ways I could never have imagined. In 2005, at the age of 24, I survived a haemorrhagic stroke and went from being a young, sport-loving, professional woman and full-time therapist, to being a helpless, dependent nonentity. Overnight I became a powerless patient, like the ones I had been caring for. The roller-coaster ride that began with a sore knee has led me on a totally unexpected and unimaginably difficult journey. And yet everything, both good and bad, has shown me, surprisingly, what is possible when you accept life's challenges.

The sudden transition from therapist to patient has given me a completely different perspective. When I first reached the point in rehabilitation where I could read and write again, I had a passion to share my insights about life as a patient. I decided that this book would be for other health professionals. With that in mind I started a Masters degree but quickly realised another qualification was not going to help me to impact people as directly as I wanted to. I felt as though I needed to make a difference right now.

I've walked in the shoes of a patient and I want to tell that story. I've realised how much health professionals really don't know about what it's like to be a patient, and how even the little things they do without noticing can affect someone else's path to recovery. I now know so much more about improving the quality of life for patients and their supporters. And the bigger lesson I've learnt, and want to share with everyone, is the importance of resilience when life doesn't go to plan.

It's taken me quite a few years to write this book. Always a keen diarist, I faithfully recorded every amazing and terrible thing happening to my body, from the first mysterious symptoms through to waking up after being in a coma. My writings range from serious attempts at storytelling to scraps, strings of words that were all I could manage at times to describe the nightmare world I had found myself in.

I've heard plenty of inspirational stories, read books and seen movies about people who have survived in the face of great personal odds. Those stories helped me but they also intimidated me a little when it came to writing about my own experience. I don't feel as though I've accomplished an amazing feat and, even though I work as an inspirational speaker, I find the title doesn't sit comfortably. My journey seems more mundane. I've survived and I go on surviving day to day. That is what I want to share. This book is not all about success, but an authentic account of overcoming the difficulties I've encountered and still do encounter every day in my stroke recovery.

This is only
my
experience. Despite undergoing a life-changing event at a young age and learning to live with disability, I could never presume to fully understand how a brain injury may have affected others. A stroke, whenever it happens, is a terrible and life-changing experience. Everybody's story is different and, although we share many struggles with tiredness, and lack of understanding, support and motivation, disability comes in many forms. It can happen at varying life stages and impacts us and those we love in many different ways. I hope my story can help not just those who have gone through their own personal nightmare, but also give some insight and extra understanding to those who love and care for them.

Lying in intensive care I never imagined I would have balance in my life again. In fact, I am dumbfounded that I have been able to reinvent myself and pursue what I love. I have developed amazing relationships, returned to meaningful work, begun my own business and written a book, all while continuing to juggle my seemingly never-ending rehab. But I have learnt that it's not what happens to you that matters, it's how you choose to deal with it.

Chapter 1

Beginnings

“Open your eyes Em!” a voice instructs.

I'm too tired to know what they're asking me to do. I am lying on my right side. All I can taste is blood. All I can feel is cold. All I can hear is my twin sister's nervous chatter and my older sister quietly sobbing. I'd prefer to sleep.

I do.

Again a voice pleads, “Darling, please open your eyes.” Now someone's holding my hand, their thumb delicately moving from side to side. It's a familiar voice and a familiar touch. I tell myself to open my eyes. I try but it doesn't work. I'll speak to them later. Right now I need to sleep.

“You're OK, the operation went well,” someone is saying, too loudly. I fight my way out of strange nightmarish dreams. I'm cold, tired and I don't like this place so I instruct my body to curl up in a ball and drift back to sleep. But my body won't budge. Perplexed, I try to concentrate harder on moving any body part,
even wriggling my little finger would be
OK. But again my entire body stubbornly remains still and limp. I'm trapped in a bubble inflated by sickly smells of blood and disinfectant. I try to cry out for help but no words come. Nothing works. My body is broken. I can't move or speak. This wasn't what I planned when I made the decision to have this operation.

For the 24 years leading up to this, life had been sweet. I entered the world on the 28th of July 1980, seven minutes before my twin sister Bec. I had those minutes alone with my doting parents until the doctor declared, “Bloody hell, there's another one in there!”

Mum gasped, “Another what?”

My shocked Dad murmured, incredulous, “Lyn, we're having twins!”

Lyn Gee cradling her newborn baby girl twins on the 28/7/1980.

Unnamed, we were known as ‘Twin 1' and ‘Twin 2' for three days, and were left in hospital while Mum and Dad bought another one of everything and prepared my two older siblings for the arrival of their twin baby sisters.

Growing up as an identical twin had its good and bad points. I always had someone to play with. From Grade One we were deliberately separated to help us form our own identities. We both had bobbed blonde hair, identical gappy teeth and answered to each other's names. Even our older sister and brother often failed to see us as two separate little individuals. In fact, Mum tells the story about my three-year-old brother Pete lying on the carpet and playing roughly with us when we were just four months old. Mum cautioned him. “Darling, please don't be so rough with the girls, they're only little.” Despite her warning he continued to tumble, poke and prod.

“Peter, what did Mum say?” she pleaded, walking over to scoop us up, balancing our fragile bodies on her hips.

Pete grinned and reassured her. “Don't worry Mum, if one cracks open we've always got the other one!”

Em and Bec's first day of school, Melbourne 1986.

Little did anyone realise that 24 years later one would ‘crack open' and what challenges that would present.

We looked the same, but we could act differently. Bec was strong, stubborn and unstoppable whereas I was the sensitive one. I longed for her strength of character. Bec was always more daring than me in tackling the unknown. She'd jump off diving boards and climb high trees while I hung back.

“Face your fears,” she would say to me. One day I would become master of this, but what my sister didn't say was that facing your fears doesn't necessarily make them go away.

One way of overcoming fear is to remember the nice things. My childhood was a huge portion of my disability-free life and so it's a favourite thing for me to remember. A time when I ran from place to place and was just another ‘normal' kid. A time when I went around and around the skating rink for fun, when a grazed knee was healed immediately with a kiss better or a Band-Aid.

I remember our neighbourhood as an exciting little world of its own – a kingdom where we kids reigned free and independent. My very favourite people in the street were the Mullins family. They weren't quite next door. There was a house between us but we ignored that and spent most of our time dreaming up ways to connect our houses – flying foxes and underground tunnels. I spent a lot of my childhood playing with the Mullins girls. We had sleepovers, built cubby houses, spent hours playing board games and went on bike rides.

But the biggest influence in my life was my family. There were six of us, my parents and four kids – my older sister Kate, my brother Pete, my twin sister Bec and me. Although we had normal sibling quarrels, we grew up in a loving and nurturing place and came to love and respect each person's individuality. My parents were great role models, their contrary personalities along with their aligned life values balanced perfectly. Mum's a sensitive down-to-earth person, always there for you and very open. Dad is very private, pragmatic and able to distance himself from a situation. At the same time he is very loyal. Their Christian faith was always at the centre of their lives and mirrored in all that they did. They provided us with a secure, accepting environment, at the same time challenging us with new opportunities and adventures. Our parents captured the potential in all four of us and we felt valued and believed in. They ensured we were grounded, exposing us to those less fortunate and in their regular acts of generosity and community involvement they instilled in us a strong sense of personal values. These were never forced upon us. Rather they seemed to subconsciously plant seeds in us, weaving them through the way they went about their lives. As Bec and I were identical twins, they always tried to make each of us feel unique and seemed to effortlessly distribute their overflowing love to all of us kids evenly.

Em clicking her heels, Anglesea 2002

The importance of family was paramount in my mum's childhood, so we spent many holidays with our extended family on my grandparents' farm, ‘Springview', in Young, New South Wales. Here there were 1000 acres to explore and have adventures with my cousins.

My grandpa would welcome us with a tight squeeze, clenching his false teeth in preparation and effortlessly lifting our four dangling bodies in unison. Then my aproned grandma would appear and our bellies would soon be full, after consuming her amazing spread of home-cooked food.

On the farm we were invincible and free. I longed to be tough like my country cousins. Each stay I would try my best to push aside any urges of complaining about teeny scratches or fearing getting dirty. We milked cows, fed the foul-smelling pigs, made cubbies in the pine trees and lit bonfires. As city kids we loved doing non-city things like riding motorbikes and running barefoot on dirt tracks. While recalling these times reminds me of all of the things I am no longer able to do, at the same time each memory is precious and makes me appreciate the wonderfully wild and active childhood I was lucky enough to have. In some way each farm trip reset my perspective on life and left me feeling rejuvenated and revived.

Uncle Tim, Kate, Pete, Em, Bec & Tom at Springview, NSW 1988.

Holidays over, I was excited to resume my busy city lifestyle where I took up as many activities as I could manage. From early primary school I learnt classical ballet and loved the discipline, creativity and grace involved in performance. I also fell in love with long-distance running and netball. Throughout high school I became involved in everything. Whether it was drama, dance, music or sport, I tried it. In most school drama productions I was guaranteed a role as a twin. Bec and I played Tweedledee and Tweedledum. In another play we were cast as twin grandmas, delivering our lines in unison. If the script didn't have twin characters, they were added.

In reality, though, by high school Bec and I were starting to form more separate identities, and I was getting a feeling for who I really was. I enjoyed being with people and caring for them. As a lot of my family were in the health professions, and two of my aunties and my older sister were occupational therapists, I started to think about a career in the health sciences.

During those last years at school there were shadows on the horizon. In 1997 my mum was diagnosed with Type 1 Diabetes and later with a cavernous hemangioma (a type of brain tumour that had destroyed her optic nerve, causing her to lose the sight in her right eye). Then my twin sister was hospitalised with a stomach condition and had to have sudden life-threatening surgery. It was my first realisation that life didn't always go according to plan. They both recovered and even though Mum had vision loss and Bec couldn't sit her exams that year, it didn't really affect
my
life hugely. I was House Captain, and finished Year 12 with a score of 93.5. I felt invincible. Nothing was going to get in my way. Career, marriage, children, it all lay ahead. So I thought…