Reinventing Emma (4 page)

Chapter 4

The Mystery Deepens

After that holiday I felt my real self, independent at last. After a series of back-to-back relationships I was determined that ‘boy' issues would no longer dominate my life. I was moving forward.

I began going out more and being more spontaneous. Sport had always been a huge part of my life. Now I'd discovered the thrill of running and was doing regular 15 kilometre runs. I'd recently done a half marathon and was training for the next one. I was playing netball twice a week and enjoying living in a share house and spending lots of time with friends. I loved my present single status.

A tiny taste of the marathon ahead, Em completes the Melbourne half-marathon, 2004.

Work was also a joy, and I was getting more passionate about neurology. One of my patients was a 36-year-old woman who had had a stroke while giving birth. She was battling many physical and cognitive difficulties, but she was soon feeding, holding, dressing and bathing the baby. It was inspiring to see her progress and it definitely confirmed my love for rehab. She was soon home again with her little family, in her own place, where she clearly wanted to be. Seeing her life suddenly turned upside down at such a young age should've shown me that things don't always go the way you plan. But I was too absorbed in my own happily organised world to notice.

Life was good but I was getting increasingly worried about my body. It seemed to be ‘out of sync'. I felt as though mentally I had to push my limbs to keep going, and concentrate harder to make my body parts move. When I ran, now I had to focus on each step to make sure it happened. It was no longer automatic. Before this, I had sailed along and let my mind wander on important topics like clothes shopping or where to go for dinner. Movement no longer seemed to come naturally; rather it felt robotic and forced. I was walking weirdly and becoming clumsier, often misjudging distances between objects and running into things, particularly on my right side. My housemate even said one day, “You Ok Em? You're not walking right.” I brushed that comment aside and said I was just tired. But his words added to my growing fear that something was really wrong.

My eyes became super-sensitive to light. I couldn't go outdoors without sunglasses and even started wearing them inside when I was alone. The back pain and headaches were the worst. Although I was already very fit, I joined a gym, thinking that a weights regime might help my core stability and strengthen my back. By then painkillers had become part of my daily routine, the strongest ‘over the counter' ones I could buy. I was measuring my day in six-hour segments, waiting until I could take the next dose, even though they weren't even touching the pain. I was grumpy and irritable and it began to affect those around me. As well as the pain there was the lack of sleep and, combined with the clumsiness, I was finding it increasingly difficult to function.

After another night of pain and poor sleep I woke on Monday 28th of March 2005 with a weird feeling in my leg. Ignoring it, I got up and picked up a heavy basket of washing to hang out before I went off to start my day's long ‘to do' list, which included a 15-kilometre run. As I went down three steps of the internal staircase I heard a distinct ‘pop' behind my left knee. It was quite painful. I remember saying to my housemate, “My body's falling apart!”

But I wasn't about to let a sore knee get in the way of my day. I had a string of social occasions before my run and a netball game that night. Off I went to have breakfast and shop with my sister, followed by coffee with friends. By mid-morning I had a little limp. It didn't deter me, but by lunchtime it was becoming worse. As the day went on my jeans were becoming progressively tighter as my knee swelled. Bec thought we should check with Dad, as he's a doctor, so we drove over to my parents' house. Dad suspected a Deep Vein Thrombosis (DVT) and said it should be checked out. My parents had guests over for dinner so Bec offered to drive me to hospital. I still wasn't taking the situation seriously, annoyed that my knee was upsetting the day's plans. On the way to the Emergency Department Bec and I joked about my funeral and who would give my eulogy. Neither of us had any idea how close such things were to coming true.

In Emergency I was asked to fill out a pile of forms. Thankfully, with a straightforward medical history it was quick. I slid the completed documents onto the blue counter and a nurse wheeled a wheelchair into the waiting area.

“A wheelchair,” I said, laughing. “I don't need that, I've just got a little limp.”

“Sorry Love, it's our policy.” She patted the blue vinyl backrest.

“Shouldn't be too long,” I said to Bec reluctantly, as I lowered myself gingerly into the chair, swivelling the footplates into the right position.

“Actually, Bec … Maybe get someone to fill in for me tonight at netball? Doubt I'll get there,” I called out behind me as the nurse whisked me away to be examined.

When they decided to keep me in overnight for observation, I began to freak out a bit.
I'd have to make up the run I was missing and would definitely need someone to fill in for me at the netball game.
Looking back, I can't believe all the little things that worried me at that moment. As it turned out, I would never run again, never play netball again and indeed never return to my old life.

Later that evening my knee injury was diagnosed through ultrasound as a Baker's cyst rupture, a reasonably common running injury. This explained the pop, the pain and the swelling. My poor mobility seemed secondary to the swelling so it all made sense. But the hospital staff were puzzled that despite my swelling going down, my ability to move had become worse. When they gave me Clexane, a blood thinner to reduce the swelling, it prompted a sudden onset of nausea and left-sided weakness. Soon I was having difficulty walking at all. Concerned at my sudden decline, the staff moved me from Emergency to a room with three elderly ladies. I tried to walk to the bathroom but took one step and fell. Reluctantly, I borrowed a frame from one of the ladies and stumbled to the bathroom. To counter the terror I felt I convinced myself it was merely the swelling that complicated my ability to move and balance.

By this time Mum and Dad had arrived. I was given my second shot of stinging Clexane as my left leg was still quite swollen and I couldn't walk. About 15 minutes later I felt a weird and frightening sensation. I groaned to Mum, “Mum something's wrong, I feel like I'm falling!” I then went sheet white and started throwing up. Indeed, something wasn't right. The nurse was called and I was sent for an MRI scan, with a bucket in hand as I couldn't stop throwing up.

I returned to my room where my mum, dad, sister, a few close friends and my OT manager were waiting. I greeted them not with a “Hi” or a hug but a big black vomit. Not only had my manager never seen me in PJs and without make-up, she'd definitely not seen the ‘throwing-up' side of me, but at that moment I really didn't care. Soon I was transferred by ambulance to the Alfred Hospital for further investigation.

I had never been really sick before. I had extras with Medibank Private to cover my few physio and optometry bills, but had decided that I didn't need hospital cover. My rationale was that I'd much prefer to spend that money on a new pair of heels. The price that I would eventually pay for that flippant decision was huge, both financially and emotionally. The cost of that ambulance ride was only the beginning of the medical costs I was about to endure.

Chapter 5

The Alfred – Digging for Reason

At the Alfred Hospital the first nurse took my blood and immediately said in a monotonous, tired, careless tone, “Think you've got diabetes.” That was the first of many incorrect diagnoses stamped on my medical file.

That night I wasn't allowed to use the toilet until I'd been assessed, so I held on. At 12.20pm I was getting desperate so I rang the buzzer by the bed.

“You can't leave your bed until you've been examined, so use this pan,” the nurse said, wedging a cold, hard metal bedpan underneath me.

“I'll leave you alone to do your business, Love.” She drew the thin blue curtain around me. Alone, I tried to balance on top of the harsh bit of equipment.
Even squatting over drop holes in Africa was better than this!
When I finished, I buzzed the call button but no one came. Impatient, I buzzed again, the metal was pinching my skin. I tried to shift my weight without spilling the pan's contents.
The busting feeling was better than this pain.
I sat there in coldness and discomfort for what seemed like hours. Eventually, I heard footsteps enter the room. A young male registrar pulled across the sheer curtain, finding me perched inelegantly on the bedpan. It was my first experience of the indignity of being a patient.

At the Alfred stranger and stranger things began happening to my body. My left toes would claw in, and the sensation on my left side differed from my right side. Constant fuzzy pins and needles radiated down my left leg, which had become heavy and lifeless. None of the experts could work out what was wrong. There was talk of multiple sclerosis, muscular dystrophy and even Guillain-Barre syndrome. I'd had patients with all of these conditions and I was becoming terrified!

As the doctors continued to guess my condition, I struggled to emotionally detach. I focused on each minute and tried hard not to be bogged down with anxiety about my future. I reminded myself,
This is just a brief taste of what many of my patients have to endure for a lifetime
. I focused on what I could learn from the experience.

No longer able to walk, I soon mastered the use of a pick-up stick. I was even able to grab my mobile phone on the other side of the bed with it. But as much as these aids I'd once prescribed for my own patients helped, the many frustrations I encountered made me realise why patients are called ‘patients'. Meal trays out of reach and unanswered responses to my many buzzes were just a few things that made me feel increasingly helpless.

In the absence of any diagnosis I was put in the cystic fibrosis ward where there was a free bed. My neighbour, Nora, was full of complaints. At nights, when she did sleep, she breathed so loudly it almost drowned out the constant sputum-coughing soundtrack of that ward. But usually she stayed awake complaining about everything, mainly the position of her pillows. Nora was particularly horrified about the food. It was so hard to keep a straight face when she'd describe her ‘meat' meal to her daughter on the phone. “That beef may as well still be running around in the paddock.”

One of my first 5pm meals was a boiled chicken; no veggies, just a chicken boiled in its own juices. I could hardly look at it, let alone eat it. If they hadn't beheaded and plucked it free of feathers, I swear you'd think it was still alive. The man next door in Room 23 was clearly not impressed with his meal either, throwing his chicken at a nurse. All you could hear was a crash, a yell and the nurse saying in a resigned voice, “He didn't like the chicken.”

I regularly wheeled my way down to the cafeteria for meals or to meet friends there for coffee to escape the endless coughing and try to feel slightly more normal. One day a friend, instead of waiting on me like everyone else, said, “You get the sugar and I'll get the coffee.” Wheeling myself across to get that sugar gave me the sugar high I needed. It really hit me that I needed to keep doing all that I could. It taught me the importance of another person's role in helping recovery, the importance of ‘doing with' rather ‘doing for'.

One of the nicer surprises at that time was the flood of visitors and gifts to my bedside each day. They'd bring flowers, takeaway food and their upbeat attitudes helped me pass the time and remain positive. I confess to being quite humbled by their presence.

“Hey Em.” Nina entered the room, giving me a hug and a big sloppy kiss. Nina was my best friend from high school.

“Sorry I'm late, traffic's a nightmare.” She perched on the end of my bed, lifted my untouched meal tray, scrunched her nose and said, “Do you have any of that jelly left, I'm starving.”

“I saved a green and red jelly for you, it's in the fridge.” It was the least I could do, in my bedbound state.

Although Nina was probably unsure about how to relate to me, seeing me in this sterile place with all the uncertainty that loomed, I appreciated her homely, bright and present attitude.

Three of my OT friends from uni – Tanya, Lizzy and Jenny – soon joined Nina and me in my room, balancing yellow tulips on top of a pizza box.

“Hi Em, feel like some good food?” Jenny asks enthusiastically.

I glance at the untouched pink meal tray. “Yes please.”

Tanya leaves to find a jar for the flowers and Jenny and Lizzy sit on either side of my bed. The cardboard pizza box rests on my outstretched splinted leg. A waft of warm yumminess hits me and my appetite kicks in. “You gals are the best.” I bite into a piece and, in comfortable silence, we eat the entire contents of the box while it is hot.

My other constant visitors were my family. My sister even flew down from Sydney with her husband to share the news that they were going to start trying to have a baby. The prospect of being an auntie for the first time was very exciting, but I had no idea what a huge role nieces and nephews would eventually play in my recovery.

There were some visitors, though, who definitely made it harder for me. My ex-boyfriend visited and, although it was great to see him again, I didn't really want to see him when I was lying in a hospital bed in pyjamas. I'd say that every person in that situation wants their ex to leave thinking, “Man I wish she was still my girlfriend,” but I'm sure he left thinking, “I'm so glad Em and I aren't together.”

As the weeks went by, physical reasons for my symptoms were being ruled out one by one. Soon the staff began to speculate about the possibility that I had a psychological disorder. I was a young neurological OT who had a lot of visitors and jars full of flowers. Was it that I loved getting the attention? Perhaps I was trying to present like one of my own patients? I was handballed to a psychiatrist who decided I possibly had a ‘conversion disorder', which meant that at a subconscious level I was putting this whole thing on.

I was gutted by this latest speculation.
As if I would choose not to run when I loved it so much!
But as the days passed many staff became more convinced that the problem was mental not physical. The idea spread like wildfire and I felt powerless to disprove it, even though I knew it was ridiculous. I realised with growing horror that my ultimate diagnosis was totally out of my control. I was also terrified that this latest psychological diagnosis would distract them from discovering the underlying physical condition that I knew was lurking somewhere in my body.

Meanwhile my non-medical friends tried all tactics to get my leg to work, from massages to attempting to entice my stubborn legs to walk to the café to get more edible food. Friends with medical knowledge, whether they were still studying or practising, tried all the tests they knew but they, like the doctors I saw, failed to diagnose my problem.

Hardest of all was watching my dad, a doctor, silently tick off all the conditions he had learnt and diagnosed. I was so proud of him and had always admired his skills, knowledge base and commitment. He'd always been there to solve any problem I had. In this case, when it mattered so much, he couldn't rescue me. I hated that I was causing both my parents to worry about the danger I was in.

I could no longer walk without assistance and still had a bulky, dark-blue splint strapped to my left leg. Previously, misjudging doorframes and other objects had been easy to cover up, excused as being ‘careless'. Now my increasingly warped perception of my body was in the spotlight. At an early physiotherapy session at the Alfred I was sitting on the right side of my bed on a blue vinyl Kingston chair.

“OK, on the count of three, push up on those armrests and stand up tall, Em,” the physio instructed.

I rocked my torso from side to side to the seat's edge in preparation.

“OK, one, two …” she said, supporting my left side.

“Let's do it!” I positioned my hands on the armrests.

I held my breath. I peered down, making sure my feet were positioned side by side. To my horror, only my right foot was in sight – my left foot was still under the chair. Terrified, I collapsed my forearms and retreated into the chair.

“What happened, Em?” she asked.

Unable to stop the tears in my eyes or the shakiness in my voice I looked up towards the physio and said, “My left foot is not where I thought it was.”

Weeks into my hospital stay still no one had worked out what was wrong with me. Desperate to get out of the sterile hospital environment, I put in a request for day leave. Even though I had to leave in a wheelchair, I was out of my pyjamas and outside those stark hospital walls. My leg still throbbed and walking was difficult, but the normality of being at my brother's home and being surrounded by non-medical conversation was refreshing.

That afternoon when Dad dropped me back at the hospital I insisted on making my own way to the ward. I was feeling good, self-propelling my wheelchair down the long corridor. For the first time in weeks I thought I could see the light at the end of the tunnel. But as I approached my room a doctor stopped me. “Where have you been?” he demanded. “You shouldn't leave the premises with a tumour in your head.”

Suddenly all that surrounded me was darkness, just endless darkness. I had no idea that the results from my latest MRI had come in and I wasn't meant to leave. But much, much worse was hearing the word that had never been mentioned before in all the medical investigations of my condition. ‘Tumour!'

I felt so sick at the thought of having something in my head. I pictured a radiating black PacMan-like growth, munching on my healthy brain, engulfing my insides.
Chomp, chomp, chomp
. With each chomp, it was enlarging in size. I held back the tears until the moment I was left alone, then I sobbed uncontrollably. For the first time I wished I had a roommate to talk to. I had a tumour. I had thought my journey being a patient might be coming to an end, but it had only just begun.