Reinventing Emma (12 page)

Mortified, I close my left eye and let one tear roll down my left cheek. Soon enough I hear more people around me. Serious voices, a giggle (perhaps this is in my head), the sound of rubber gloves, and the clunk of my bed's cot sides collapsing. Then I'm rolled onto my side, so my bed-clothes and linen can be changed and my entire posterior-side wiped. Then one deep voice instructs, “We'll roll her on three. Nancy – you pull down her pants, Sylvia get the sheets ready and Bianca you wash her down. I'll roll her.” I hear the shuffles, running water and the flap of sheets as they assume their positions.

Then I feel someone firmly grip my right shoulder, the other grabs my right hip, “Ready one … two … and three,” she barks.

I groan, disliking the rocking movement. I feel like I'm on the Gravitron at the Melbourne show. My world spins fast. I feel giddy, nauseous, but I have nothing left for this body to expel. My throat gurgles but I know it's just crying wolf, like all the warning bells my body has set off since my operation. I'm angled sideways until my nose is squashed between the hard plastic mattress protector and the nurse's dimpled leg. Her chubby elbows then flex, tilting me on an angle to give them better access to the faeces aftermath. The nurse nods, instructing them to wipe me. “I'll get rid of this soiled stuff and get it ready for Mum to take home and wash.”

I hear her tie a bag and drop the heavy parcel inside my cupboard ready for Mum to take when she next visits. Her words leave me filled with dread. Mum has enough to deal with.
She did this for me 23 years ago.
If I could yell, “My mum's name is Lyn and please chuck them in the bin,” I would. If only my stupid body would work for ten seconds I would run and dispose of any evidence of this nightmare.
Yep, I would run to prevent my mum willingly sharing the humiliation I feel.
Being vulnerable and exposed is awful enough. Showing someone who already knows the last safe bits you're holding onto inside, when they know how it'll affect you, is hell. I gasp as a potent lemon disinfectant odour wafts over me. This, combined with the sickly sweet fake lavender deodoriser they spray, hovers in the air around me, so strong I am forced to taste it.

“All done, Emma.” She squeezes my shoulder sympathetically and says, “You must feel quite embarrassed, but it's our job, Em. We do it all the time. Sleep now.” Her voice is soft but tired, and my light is turned off.

Some nurses made me feel like a person rather than a patient. Jacqui was my favourite. She would carry out each task cheerfully without complaint. Even when giving me a sponge bath, rather than leave me lying naked on the bed, she would only uncover the necessary parts, ensuring that I remained warm and maintained the tiny bit of dignity I still had. She made me feel special, whether opening my curtains for some sunshine, or reading my get-well cards. She listened to my muffled speech and grunts and patiently attempted to figure out what I was saying, and moisturised my dry feet.

At night Lee and Ruby continued the amazing care that Jacqui had shown. Lee was so gentle in her manner and wore her soft grey hair in a bun on the top of her head, reminding me of a fairy-tale godmother. In her presence I slept better, knowing I was in good hands.

Actually, most of the night nurses were amazing. Knowing they were awake and watching me was so reassuring. I never would've endured that initial phase of my recovery without the generous care I received. My writings capture very humiliating and demeaning situations that prevailed in my diary and mind. I tell these stories to highlight the enormous impact another's words or actions can have on one's recovery. Being aware of those tiny things, often overlooked, can make all the difference.

Chapter 19

Passing on the Worry Baton

Being in Sydney meant the majority of my friends and work colleagues could not visit. Many of my relatives lived nearby and were so accommodating and supportive of my immediate family who'd travelled from Melbourne to be with me. I quickly realised just how big and how close my family was. Aunts. Uncles. Cousins. Great Aunts. More cousins. I loved seeing all this family. Each visitor left me with gifts and flowers. My Auntie Liz even smuggled her new dog into the ‘pet-free' hospital in her carpet bag to cheer me up. But having so many people around also zapped my little energy.

Although I was distressed that those who knew me well could not understand me, having more than one person in the room was so comforting. My sister-in-law Rach would sing to me, and my siblings held my foreign limbs warmly. None of us had words to express the situation we were in. I'm sure they each put on a brave face for every visit and I can't begin to fathom how hard it was to see me in that state. For me it was somewhat easier, as I had medication to cloud the reality of the new realm I was in.

A regular visit from my parents was the major comfort in my new world. Where each visit was groundhog day and probably boring and tiresome for them, it was a highlight for me and gave me a reason to improve. A typical visit went something like this…

“Morning Em.” Mum cheerfully disguised the sadness she must have been feeling. Seeing your daughter wrapped up in blood-stained bandages is not something any mother wants to see. Her tears bubbled in the background and, like a boy's pubescent voice, her pitch throughout the visits fluctuated. I knew that when she left the room to fill up jam jars for my flowers, she was probably filling them with tears. I couldn't move to comfort her. I couldn't turn to look away. I was forced to watch her fragile bravery.

She leant down and kissed me. I was unable to tell her that her body weight on the mattress worsened my pain. My bed's cot sides were positioned up to prevent me falling out, meaning she couldn't sit on my bed. Instead, she pulled over a chair and leant towards me. “It's quite cloudy out there today, Em. I think it'll rain again. But that's great for the garden …” When she was there I could rest. Exhausted, I selfishly passed the worry baton onto her and slept.

I woke to a piercing
click click click
noise. Mum was knitting a blue beanie for my niece or nephew. She'd already knitted the white and pink ones.
I wish she could knit me a new body
. Every visit she brought crosswords, read get-well cards and I pretended to take in what she was saying, but the rhythmical tone of my mum's voice was soothing enough.

When Dad came he always chose to sit in my new black wheelchair. I liked that. He brought familiarity to the ugly device. His choice to sit in it instead of in the vacant visitor chairs was comforting. To me, without saying anything, he was accepting that his daughter now used a wheelchair. Sitting back in it, he appeared quite relaxed. Every day he helped me do my speech exercises. We poked out our tongues, did “eee” sounds, blew kisses and I tried to smile. The black footplates, adjusted for my two weak, flaccid legs, were his footrests. His twitching feet, which had always irritated me, were a rhythm of relief, a comforting metronome-like beat.

Apparently while I was in a coma my dad had said, “Em, when you wake up we'll buy you that golden retriever.” Although I didn't recollect this promise, Bec was present. Determined to make him keep his word, she immediately began researching golden retriever litters. Talking about my future puppy became a diversion for my visitors and me in that initial stage. It was nice to hear people around me talking about things unrelated to my condition and seeing them smile for a change. But deep inside I began to silently freak out.
I had to care for a puppy and couldn't even toilet, wash or feed myself
. I couldn't communicate my reservations and my walls soon became plastered with photographs of the litter. The dog was chosen and the breeder agreed to keep him until I was back in Melbourne and able to care for him. Although I had always intended to name my first dog ‘Gilbert', my family named him ‘Morgan' after my surgeon, who I don't think was too impressed. He said, “I've had a baby named after me but … never an animal.”

My parents didn't seem angry about their daughter's transformation. They were continually saying, “It'll be OK, Em, we're praying for you. It'll just take time.” Whilst their words were reassuring, it was my body that had been tampered with.
Couldn't they just return it, like a faulty toy? Why did they seem so accepting? Why didn't they tantrum on my behalf?

Towards the end of my stay at Dalcross Hospital many of my closest friends flew up from Melbourne. I knew it must have been so confronting to see me in the state I was in. But it was so reassuring to know they were there. They would take turns feeding me and wiping the drool off my face. I'm sure they would exit and burst into tears.
How was this fair? In a few short weeks I'd reverted to babyhood – soft toys, mashed food and afternoon naps.

Bec had taken a lot of time off work, so once I was out of ICU she had to return to Melbourne and pick up her life. I hated her leaving, moving forward when I was going backwards. I was now in the negatives. Unable to freeze time while I caught up, Bec left me with Mum and Dad. My mind was filled with irrational distress.
Was this my pay back for entering the world seven minutes before her?

Although inwardly annoyed at everyone's seemingly easy transition back into their ‘normal' lives, on the outside I tried hard to not let this selfish mindset affect them.

Emma update 9th july 2005

Emma continues to improve slowly but it will be a long while before she is back to her old cheerful self. Although her legs are OK, her balance is poor and she can't yet stand without assistance.

Medical letter

Dr Alan Lam's letter to Professor Michael Morgan, dated 11th July 2005

Having assessed Ms. Gee, I agree that she will require inpatient neuro-rehabilitation to optimize her transfers, mobility, function, swallowing, articulation, balance and co-ordination. She is currently not yet able to take a commercial flight back to Victoria with her parents. With the agreement of Ms. Gee and her parents, she will commence inpatient neuro-rehabilitation in Dalcross Private Hospital . Her program will entail Physiotherapy, Occupational Therapy and Speech Therapy.

On successive reviews by me on the 7.7.5 and 9.7.5, Ms. Gee was making excellent progress. Her febrile illness was settling with antibiotics. The nasogastric tube has been removed because she is eating well and meeting her nutritional requirement, and her sitting balance and tolerance are improving. As such, Dr. Robert Chia, Intensivist, and I are hoping that she will be well enough to travel back to Victoria with her parents by commercial flight in about a week, so that she may continue inpatient neuro-rehabilitation in a public rehabilitation centre close to her home.

My departure from Dalcross was imminent. My close family and friends, who had already invested so much in my recovery, definitely deserved some acknowledgement for the tiny progress I'd made. Having worked in neuro I knew that it was going to be a very slow recovery. My journey had only just begun, and I would still need them for a long time yet.
How could I even begin to repay them for their efforts?
They knew that I still had my marbles but I wanted to somehow show them that their support had been worthwhile.

I still remember my mum's mobile number. I buzz the nurse and ask for the phone to be moved to my tray in front of me. Instead of lifting the receiver, I lie there rehearsing pressing the blue padded digits on the phone in my mind.
I only have one chance to do this before my little energy vanishes
. But little do I realise how difficult it is to move and isolate my disobedient and ataxic fingers.

After a few hopeless attempts at punching the numbers in the right order and intermittent power naps, I somehow do it. I don't know what gibberish I mutter, but the weight of the phone kills me. So after Mum knows that it is me I drop the receiver. I'm so relieved that I've done it, but at the same time I'm frustrated.
What I'd rehearsed to say in my head had not come out
. I also had not prepared myself for the immense physical effort it would place on my weak body. Neither had I factored in the mental toll it would take trying to get my trapped words into action.

Mum's diary: 12th july 2005

While I was shopping my phone rang and a little voice said, “Ma … !” I couldn't believe it, but Em had rung me by herself. I'm amazed that Em, with her ataxia and eye problems, could dial by herself. What an achievement!

If I could dial a phone number, I surely could return to doing other normal things, and was determined to put in the effort.