Reinventing Emma (6 page)

Although there was some clarity, I was still left with the agonising decision of whether or not to risk the surgery. Radiotherapy and embolism were clearly not options because both left the chance of the AVM rupturing in the near future. If that happened the outcome would be fatal. I felt too young to be taking on such a responsibility. For 24 years the hardest decision I had ever had to make was choosing between chocolate, strawberry or vanilla ice-cream and yet here I was having to decide whether to have life-threatening brain surgery. It was so tempting to take the chance, ignore the AVM, return to my old life and plan to one day get married and have children.

But I knew that if I went on living with the threat of sudden death hanging over me, it would hugely affect my life and all my future relationships. After hours and days deliberating with my doctors, family and friends I decided to have brain surgery. It was that or drop dead.

Chapter 8

The Therapist Becomes the Patient

Once the decision was made I couldn't wait to get this thing ripped out of my head. But my AVM and I had been together for 24 years, and we were going to be forced to spend yet more time together. Ironically, before I could have surgery I had to learn to walk again, so I was transferred by ambulance to Caulfield General Medical Centre where I had worked as an OT two years earlier. Now I was about to see it from the other side.

With me in the ambulance was a man in his mid fifties who had had a stroke. He was paralysed down his left side, had a facial droop and couldn't speak clearly. I could tell he was anxious when he introduced himself, “I am John and it's difficult to understand me.” Actually I
could
understand him. Many of my former patients had similar speech difficulties. For the first time I could see a positive side to my situation. I was still a therapist and could reassure him, but at the same time rapport was much easier to build because I felt at his level. I was now a patient too. We'd both been struck down by a neurological condition and were both approaching unknown territory.

In that bleak time it was a small comforting thought, that I was now a powerful combination of patient and therapist. But this positive frame of mind was soon challenged when the ambulance entered the gates of Caulfield Hospital. I spotted a white station wagon with a familiar number plate, SPY 923. It was a hospital car I had once driven. I also recognised the OT behind the wheel and I was suddenly painfully aware of my change in role. That first night I wrote in my diary:

I entered Rehab 2 overwhelmed. I was tired. A single room was a relief. I was wheeled past a social worker I had worked with. I wanted to hide, but sitting there in my frilly pyjamas unable to walk I was forced to acknowledge her. Puzzled she said, “I know you from somewhere?” I was exposed. My disguise was blown. I reluctantly said, “I worked with you.”

My colleagues were also confused by their own role in my rehabilitation. Upon my arrival, a handwritten note was left on my bed on top of a pile of neatly folded clothes for me to borrow.

Hey Em, Hope your first night is OK … I've got a feeling you might be inundated by work people … so will let you get into a routine and look forward to spending some time with you on the weekend. I'm thinking of you always, though, and am here if you need me. Love you lots – have a good day and keep smiling!

These words were just a small slice of the constant love, support and encouragement I received throughout my rehab. But in spite of all that, I became steadily more depressed and anxious. I hated my former colleagues seeing me around the clock. They saw my low points and my tears and attended to all my needs, even changed my bedpan. And what worried me most was their access to my medical history, where they would see the query of a ‘psychological condition' stamped on my file. Even though my condition was diagnosed as a physical one, I was still haunted by the words of the psychiatrist at the Alfred.

I knew I should be concentrating on getting physically better but I was torn between dealing with the AVM diagnosis, grappling with my decision to have a craniotomy and accepting the loss of independence, dignity and self-worth. Yet I wanted to be brave for my family and for my colleagues.

Day by day my anxiety about the time bomb in my head grew. I didn't know what the warning signs of my AVM rupturing would be. All I was told was that I couldn't increase my heart rate, hold my breath or lift anything too heavy. Any strange feeling in my head panicked me. I'd buzz, the nurse would respond and take my pulse and blood pressure … I was driving the staff crazy. I'd wake every morning and do an exaggerated smile to make sure my AVM hadn't ruptured during the night.

I lie on my bed, wide awake, but with my eyes shut to deter my roommate from chattering non-stop about her problems. I want to be alone, to get some time out from this hell before Louise, my friend from work, arrives. But shutting my eyes doesn't shut out my AVM. It talks to me in an urgent pulsating tone. It seems to enlarge and louden with each second and the more attention I give it, the bigger and more lethal it becomes.
Focus on another sensation
. I remind myself to breathe. Apparently regular oxygen flow will tame my AVM, prevent it from blowing. Lou's here any minute. I wish I'd cancelled.
How do I act in front of her? Do I keep pretending things are dandy for my visitors' sake? Surely if I make it hard for them, I'll push them away and they won't get hurt. I can let them escape.

Footsteps enter the room and my eyes open.

“Hey there, Emmy.” Louise walks towards me.

“Hi,” I say, avoiding too much eye contact. I have to concentrate on staying in a grumpy mood and not let her snap me out of my negative mindset.

“Can I sit?” she asks, lowering herself into my visitor chair. It hisses, letting out trapped air from the cracked, brown vinyl surface and breaking the awkward silence I'm deliberately creating. I stay on top of my white bed covers, hugging my bent right leg close to my chest and leaving my stubborn left leg outstretched. I rest my right ear on my knee. My white Ted (compression) stockings look hideous under my grey trackies.

“So how's things, Em? You don't seem too happy today.”

A tear escapes down my check. I quickly wipe it away on my sleeve before she notices.

“I'm OK,” I lie.

“So … um … What have you done today?”

“Not much,” I say, in a monotonous tone.

Silence. Awkward silence. Silence that I would normally fill.

“Oh … um … Well, work's quite busy. Jasmine's gone away so I've taken on her caseload for a bit. Everyone at work says hi, by the way.”

I grin briefly, resuming a sombre and blank expression.
Poor thing, she's trying and I hate seeing her struggle to cheer me up.
I consider pretending I'm OK for her sake.

“The funniest thing … So Miranda was on her lunch break and … ”

I find myself not listening to her story.
Nothing's funny anymore. Miranda hasn't even contacted me since this all happened. Besides, lunch here is gross.

She laughs. It's contagious and I find myself laughing along. It feels good. She's broken the self-pity spell.

Lou glances awkwardly at her watch, saying, “I'll get a parking fine so have to go now, Em!”

The nurse enters to take my blood pressure. Relief replaces my anxiety for a moment.

Lou occupies herself on her phone while the nurse pulls up my right sleeve and wraps the blue cuff around my arm. I watch the nurse look at the rising dial and my anxiety inwardly escalates. When she scribbles down the result on the clipboard, I'm relieved to hear that my blood pressure is normal. I collapse my tense body back onto the pillow behind me.
I can relax until the next check.

The nurse removes the cuff from my arm, puts the pen back in her scruffy hair-do and exits the room, wheeling the machine behind her.

Lou looks up, saying, “All done?”

“Sorry, Lou Lou,” I quickly blurt out.

“It's fine, I had to text Jane about tonight's netball game anyway.”

“No, I mean sorry for my grumpy mood. I'm not in a good way, I hate being in here.” I'm crying now.

She rises from her chair and hugs me tightly. I let her, folding into her and hugging her back.

“I know, Em, understand totally. It's crap. The whole situation is crap, you don't deserve this!” She pulls back from the embrace, stares directly into my teary red eyes, clutches my shoulders and almost shakes me back and forth to reinforce her statement.

“It's all good though,” I perk up, reaching for a tissue and blowing my nose.

“It's
not
‘all good', Em … I have to go but I'll visit again soon, OK? And will text soon.” Again, she hugs me tightly and then stands up, turning while grabbing her bag and walks towards the door.

“Thanks for cheering me up Lou,” I say behind her.

She blows a kiss from the doorway and leaves.

Another thing preoccupying me at that time was my love life – or lack of it. As a young girl who had previously been in several long-standing relationships, I had never envisaged a future without a partner. Now I felt intensely lonely and wished I could share what I was going through with a significant other.

I wrote in my diary:

A guy I had met a few weeks before this hell ride has been texting and calling. I ignored his messages initially but knowing I won't be in a position to see him again in the near future I just texted him. I felt I needed to justify my sudden disappearance. All I wrote was, “Running injury turned out worse than thought.” I was honest. I just deliberately omitted A LOT of the other information. A girl with a time bomb in her brain is hardly attractive. I am now high maintenance, whether I want to be or not.

The waiting period at Caulfield was the hardest time of all. I often only had one hour of therapy a day, so I had way too much time to think about my future. During the day my friends and colleagues were working. In the evenings their visits were comforting but by then I had had the entire day to stew. Often I felt closed to their attempts to infect me with their positivity, and unable to celebrate their good news. Friends who had previously told me their problems suddenly stopped sharing, reluctant to dwell on their issues, which now they probably thought were minuscule in comparison to mine. I felt as though I was tainting everyone's lives.

I was definitely heading into a downward spiral, having become inward focused and self-indulged, bitter, irritable and resentful. Rather than leaning on the amazing supports I had, afraid of impacting their lives more than I had already since my admission, I chose to shut them out.

Eventually I knew I needed to return home for my own mental wellbeing. All too soon I would have to re-enter the sterile hospital realm for my craniotomy. My therapy team were reluctant to let me leave. From their perspectives I was still making physical gains. But they understood my rationale that I had to remain emotionally fit as well. More time inside the rehab walls was going to destroy any remaining sanity I might have.

Chapter 9

A Brief Taste of Independence

Once I knew I could leave rehabilitation, all I could think about was returning to my old life. But it wasn't that simple. My Richmond pad had stairs, and my operation wasn't until June. It was only mid-April and I didn't have enough money to pay rent for that long. I reluctantly agreed to move back to my parents' ground-level, more accessible home where they could care for me. But moving back was an emotional whirlwind I wasn't prepared for. Everything had changed.

Mum wheeled me into my rental unit and my housemate greeted us. It seemed like yesterday that I'd complained to him about my body falling apart. Now here I was in a wheelchair, level with his bellybutton. I didn't chat to him for long, as I was on a mission to reclaim my personal belongings before the entire family removalist party arrived. Before Mum had closed the front door I was out of my wheel chair and bum-dragging reverse style up the 26 steps to my room. Mum got there before me, boxes in hand. I burst into tears. Like any girl my age there were things I really would rather my mother didn't see, but there was no way I could be private about this. She was there to help and I had to grin and bear it. Thankfully, my twin sister soon arrived and was able to pack one box full of personal things so I could try to keep some dignity.

What followed was like a tornado hitting. In one hour everything was packed, the removalists were sweaty and hungry. I felt practically hurled back into my wheelchair and into the car and we drove away, that part of my life gone. I was angry. Thoughts flew around, colliding violently inside my head
. What if I could manage those stairs?
I was sure I'd be back walking soon. But whether I improved or not, with my upcoming craniotomy and the dependent state I'd be in afterwards, I knew in my heart that I couldn't live there anymore.

Installed in my new home, I later wrote in my diary:

I'm in my wheelchair and have been plonked in my parents' lounge room. I can hear chatter and laughter in the next room. But I want to be alone. No time for farewells, my belongings were boxed or given away … I feel trapped – they may as well have gaffa taped me up in one of those twelve boxes.

In spite of my restlessness at being home with Mum and Dad, I did gradually begin to make physical gains. My left side was becoming stronger. I could soon walk independently with a single-point stick and only needed my wheelchair for long distances. As I improved physically I began to question my decision to undergo brain surgery.
Why had I chosen to go through such a dangerous operation? Why remove something so tiny now, when it has been with me for 24 years?
In a few weeks I'd be walking normally, and the possibility of just returning to my previous life was tantalising. But I knew that masking the problem would only prolong any suffering and I couldn't live with this time bomb ticking in my head.

While I waited for my operation, I spent my days shopping, seeing friends and going to the gym … Preparing. Definitely distracting myself. I caught up with the people who were important to me. Everyone said, “Just see it as a holiday. Make the most of it.”
Sure,
I thought,
how do you make the most of your life when it's about to end?

Since Bec and I were identical twins, she also had to undergo a brain scan to ascertain whether she had an AVM. The days leading up to this procedure and awaiting the results were torture. Bec and I have always dealt with stressors very differently. While I internalise my anxieties, Bec verbalises hers. She agonised constantly. “What do I do if I have a VCR (Bec's attempt at using the ‘AVM' medical jargon) in my head?” “What if …?”

Everything she said, including “My head feels weird!” mirrored my thinking. But I
had
been indisputably diagnosed with this time bomb, while whether she had one or not was still unknown. Her nervous questions were totally understandable but I would exit the room and cry to myself quietly. I felt responsible for her distress and the prospect of my parents having to care for
two
disabled adults in the future was terrifying.

Thankfully Bec's brain scan results were clear and she exited relieved. Despite feeling immensely guilty about being the one that was OK, she was quite chuffed that the scan revealed that her brain was quite big! In fact, according to my Dad, her parting question to my surgeon was, “Is my brain bigger than Em's?” Although I was so grateful for her result, I secretly hated that it was now my AVM diagnosis that differentiated us as twins.
Wasn't it enough that months before she had dyed her hair brown?