Reinventing Emma (10 page)

Chapter 16

Reality Bites

As the medication was reduced and I became more alert, I started to get an inkling of what had happened to me. All the time in ICU I'd convinced myself it was the drugs that had been stopping me from getting back to being my old self
. How could I recover with all the hospital paraphernalia, the mask and tubes smothering me?
Now it slowly dawned on me that even my close family couldn't understand me. I longed to communicate and escape the terror I was trapped in. But I couldn't, the words inside me seemed set in concrete.

They call on Bec, hoping that as my identical twin she may comprehend my gibberish. But she just shakes her head at my attempts to communicate. Her lips begin to tremble and eyes well up with tears. She has no idea. My family attempts a few different things to try to communicate with me. At one point my sister holds a pen in my right hand, angle my head at the paper and say, “OK now write how you feel, Em.”

Easy
, I think. But again, the letters are stuck inside my head. If only I could write,
I am terrified.
Instead I become so distressed my blood pressure rises with my heightening frustration. In seconds the nurse is with us and is simultaneously grabbing the paper and pen from her and sternly saying, “You'll have to stop that and go.” Without giving me a chance to compose and transcribe how I feel, she whisks Bec away. I am alone with my stuck words and boiling frustration.

Determined, Bec arrives a few days later with a red magnetic letter board under her arm and a big grin as if to say, “I don't know why I didn't think of this earlier.” I inwardly smile back –
finally a way to communicate!
She holds the board near my right hand and puts the loose letters in my flaccid fist, wrapping her fingers around my useless digits to guide them. But she must've lathered the colourful letters in soap as they're too slippery to grip.
This is not a time to play tricks, Bec
, I silently huff. My blood pressure goes up again.

Student doctors surround my bed and assume their examination stances.
This is my chance to prove that I am still cognitively OK.
It is a test of my cranial nerves, something I struggled with when I studied anatomy. No time for last-minute cramming or Red Bull fixes to kick-start my brain. I have waited all morning for this. Since their last visit I'd practised moving my head in a nodding action, my chin falling quickly to my chest with no control. It's a way of communicating a definite ‘Yes.'

I think, “I'll show them this.”

I try to block out the constant high-pitched buzzing in my head. I listen hard to their commands and do my best to obey, desperately attempting to shrug my shoulders, to squeeze both eyes shut, to purse my lips. But my body refuses to do what my brain tells it to. I can't even raise an apologetic smile. They don't seem too impressed at my efforts. I watch them jot notes on their clipboards in silence. They soon leave. Deflated and utterly exhausted, I sleep.

I opted to have this procedure. I chose to have my head cut open to remove the teeny weeny thing in my brain. Although I'd heard the associated risks and signed my will, deep down I thought the chance of anything bad occurring was unlikely. In my mind I had thought I would get this over and done with and return to my life as a normal 24-year-old, living independently, running and working full-time again. Becoming disabled was not part of this plan. My wonderful family seemed optimistic that I would soon make a full recovery. But I was starting to suspect that it wasn't going to be quite that simple.

Chapter 17

Deficits Revealed

Mum's diary 30th june 2005

We were so pleased to find Em out of ICU – in Room 10 downstairs near the nurses' station.

Apparently I had ‘eaten' enough fluid and was choking less, so could be transferred to my own room on the ward. It was a relief to move from ICU, but at the same time it concerned me that the doctors thought I was well enough to not need constant medical supervision.
Surely I wasn't safe to be alone yet? I still hadn't been allowed to get up!
The constant presence of medical staff had become familiar and was comforting.

The room I was moved to was even brighter and noisier next to the nurses' station. While that made me feel secure, my brain couldn't cope with all the extra stimulation. My new body interpreted every noise or touch as severe pain. Any slight movement elicited waves of nausea. It was far from the stillness I'd envisaged. This new place only seemed to cause more discomfort. The walls still spun anticlockwise, and the lights seemed brighter. I still saw double, and the cloned strangers wouldn't let me sleep. They made my tired body sit upright but didn't seem to understand that they'd tipped the chair on a 35-degree angle. It was impossible to sit without falling forward.

The truth was dawning. I had had a stroke.
I'm too young to have had a stroke. I'm an active healthy girl. Aside from the odd cold, I've never been to many doctors. Plus, I'm an OT. This shouldn't happen to me. My patients have strokes, not me!
But there was no doubt. I'd had a bleed in my brain and acquired all these deficits. My medical file now had a long recent history. Dysphagia, dysarthria, nystagmus, diplopia, sensory, balance and mobility deficits. All big medical terms that I thought I understood in theory but was now experiencing first hand. Terms that I used daily as a health professional, and seemed to stress the importance of my role and add to my credibility. Now I was beginning to see that, to a patient, they were just gobbledygook, adding unnecessary confusion and complexity to their situation. How differently I viewed the medical jargon now that it applied to my own body.

Finally out of intensive care, Em realises the huge road ahead.

In plain English, I had trouble swallowing and needed tubes shoved inside my throat to help me (
dysphagia
); people couldn't understand me (
dysarthria
); I wobbled like jelly (
ataxia
); I couldn't point directly at anything and approached any object in a zig-zag fashion (
dystonia
); my world was angled (
vertigo
); I couldn't control my bowels and needed a catheter to wee (
double incontinence
); I now saw two of every image – and trust me, seeing one bed pan was enough! – (
diplopia
); my world now spun (
nystagmus
). My left hand clawed in like a scared turtle hiding in its shell (
left-side paralysis
); my mouth permanently drooped to the right, my eye wouldn't close and I drooled (
right-side facial paralysis.
) But wait, there was more. They were predicting that my balance and mobility would also be an issue when I got out of bed as the bleed was in my cerebellum, the control centre for balance.

I dreaded how many more deficits I had yet to discover. At just 24 I had been in full flight. Now, my wings had been clipped. I may no longer fly.

Mum's diary 30th june 2015

Prof Morgan came in and told us she “had all her marbles”. It is so good to know she doesn't have permanent brain damage even if her speech, facial nerves and left side are temporarily affected.

Although I was barely verbal and attempted badly to use a communication board, my surgeon had assessed my cognitive state in other ways, and it was an immense relief to hear him say that I still had ‘all my marbles'. Every word I had tried to say or spell in those initial weeks had been communicated with one intention – to show everyone that I was still mentally OK. I also assumed that the wooziness, inability to move, speak or swallow would resolve … not worsen. But as days passed my newly acquired deficits became more and more apparent.

Previously I'd felt like I was only a head, as my body had felt too heavy and numb to own. Now it had woken up and joined my head. But it felt as though the surgeons had incorrectly welded the two body parts together. Like a marriage gone wrong, they clashed from the beginning of my journey and refused to co-operate.

Each day, the reality of my damaged body sank in more. I would finally begin to get used to one deficit just to find I had another to deal with. On about day 17 a really odd sensation emerged. I started to feel water streaming down my right cheek, and kept a tissue in my useable right hand to try to mop up the imaginary fluid. Puzzled, my visitors noticed my new weird habit and tried to assure me that I was not leaking.

I also experienced other phantom symptoms in those early days. The beginnings of my chronic nerve pain emerged, my damaged brain sending strange signals to my body. My pain seemed trapped inside my tight skin. Any movement, particularly in my left arm, automatically shook up the fiery thick balls of pain. They angrily rammed into each other as they tried to penetrate the skin to escape. If I lay still, the pain seemed to settle and, although still constant, appeared to simmer away deep down. “Don't move,” I pleaded.

While I hated understanding so much of the medical jargon, having worked in the health sector meant I could draw on some of my experiences dealing with other patients. As an OT I'd worked in pain management and I thought I knew how debilitating chronic pain could be, but this was different. It was a storm, unbearable, nothing like I'd ever experienced. I was determined to start desensitising my own warped, wrongly wired body as soon as possible. I would test if the pain management strategies I had prescribed for others actually worked.

Despite the pain, I knew I had to force my body to move. One method I used in those early days was just moving my fingers – tapping each finger pad to thumb one by one. I'd repeat the pinching action with each digit simultaneously with my right and left hand. While my right side seemed to struggle with the movement, it was the pain and hypersensitivity in my left hand that slowed it down and enabled my right to keep up.

Another deficit that revealed itself was ataxia. Every time I went to move or reach for something my body shook rigidly in an exaggerated shiver. This horizontal shudder confused anyone watching. They were unable to work out what I wanted. My body felt like it had become possessed.

The first time I walked I needed a physio and two nurses to support me. Each strongly gripped a limb or section of my uncooperative puppet-like body. I was so bendy that they all struggled to coordinate my limbs. Apparently, in that initial attempt I only walked three metres. A few months before, three kilometres had been a tiny distance. Unable to walk me, they returned me to a huge bear-like chair that was so soft it almost swallowed me. Exhausted, I slept.

When I wake I see a young girl staring directly at me. “Look at her,” I gasp inwardly. “Poor thing.” Her weak, pale body occupies a similar chair to mine. Her body seems flaccid, her limbs strapped in. Her torso is tilted to one side, angled like she's about to fall asleep. A white folded pillow acts as a bumper, positioned on her right shoulder, and forces her neck to sit upright. Her facial features look wrong, asymmetrical, almost like a mosaic we'd studied in art at school. She only has one eye – the other is hidden behind a white eye pad, and her mouth is askew. She's obviously had surgery on her head. The right side is shaven and staples bridge a 20cm bloody incision. Greasy tufts of hair sprout from the other side of her skull … Then the blue knitted poncho around her neck catches my eye.
That's the garment my grandma gave me! Why is she wearing it too
? With a shock I realise it's mine and this is
my
reflection.
This is … me. This is
me
. What has happened to me? This girl is me.
Terror surrounds and engulfs me.