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.