Reinventing Emma (17 page)

Not only was it deeply embarrassing, I also felt I had let them down. None of us had factored in my disability needs in choosing the venue. Back then, we were all on a steep learning curve and I didn't even know my own needs to be able to brief them.

Over that period I really missed Bec, who was still travelling overseas. Part of me had foolishly assumed that she would stay by my side until I was well enough to escape with her. I would jealously hear about her travels. Even though she continually sent letters, photos and called, it was hard to accept that she'd moved on. When she returned from her trip, she went back to her busy lifestyle, doing all the things I had planned to do. She began dating a great guy, Paul, who had never met me prior to my stroke. ‘Meeting the parents' is always daunting, but having to meet a disabled sister as well, I'm sure was terrifying.
Would it change his feelings about Bec?
I hated contemplating that I might impact her path more than I had already.

But thankfully that didn't happen. Bec and Paul decided to work abroad and on Boxing Day, 2006, while in France, she unexpectedly called me with the news that Paul had proposed. She was going to get married in 2008. Despite feeling shock at her announcement, I was so excited for her. Paul had been wonderful for Bec and was an amazingly calming, observant and patient guy, full of drive and integrity. He would be a thoughtful and caring brother-in-law for me and if our twin-ness was to be divided by anyone, he was the perfect choice.

By now Kate had given birth to a baby girl, my gorgeous niece Lucy. With the excitement of that and Bec's engagement, the winds of change were blowing around me, but I felt my life was stationary, going backwards even. There I was, still living at home as a disabled adult child. It was sorely testing all of us. I'd always had a great relationship with my family and friends but having them now as my carers was changing the dynamics of our lives.

Chapter 26

The New Me Steps Out into the World

After over six months living at my parents' home, I was feeling stuck and too reliant on others to care for me.
I just wanted to get on with life.
Experiences like shopping with Mum had shown me that people saw me very differently now. In my parents' homey environment I had begun to get used to my own deficits, but once outside that familiar front door, everything changed. There were so many obstacles, I could see why many people would give up in this phase. The world doesn't seem to want you back in this form, and those who love and accept you don't want to let you go out and experience failure.

But a return-to-work appointment in the city was the perfect opportunity to go beyond home and shopping centres and tackle public transport with my new frame.

Catching a train will be so easy. Once I could have run this route blind-folded,
I think. Declaring my intentions to my parents, however, signals a major battle.

“You'll break a leg … this time you'll be doing rehab alone.” And later “If you must do it, do it with your mother.” Even with Mum accompanying me, they thought I was setting myself up for failure.
My parents are saying catching a train is too dangerous. Imagine what they'll be like when I start driving again!

Getting ready is the first step in preparing to enter the danger zone. It's no fashion parade going out with a disability. Eye ointment replaces eyeliner; lipstick only magnifies the deep crevices in my sore, wonky lips. My fashionable wardrobe is now useless.

Mum parks the car while I tackle the seemingly endless ramps leading to the platform. First the declines, I breathe. I had once run downhill, arms out like the wings of a plane and eyes closed. Now, I try to test out my former running coach's theory that shifting your weight backwards helps.
Disastrous!
Instead, I end up squatting to prevent somersaulting down. All I can see and hear around me are feet. Heels, sneakers, heels. Heels. All walking with ease. Two out of the 50 people that pass ask if I need help. To the others I am invisible or they're just too busy rushing to make the train, Vegemite toast or mobile in hand.

We are getting the 8.19am train. Waiting on the platform, I must look as if I'm starting a race, my frame positioned at the very edge of the yellow line. The doors open but before I've even managed to cross the line the ‘beep beep beep' sound signals that the doors are about to shut. Mum is in the carriage, but my frame and I are still on the platform.

“Jump on, Em!” shouts Mum, terrified at the prospect of her daughter falling down the big black space in between the train and platform. They hadn't covered jumping in rehab, but looking at Mum's face I know I have to get across that abyss somehow.

I monkey-bar on, my knuckles white from strangling the rail inside the carriage door, my eyes struggling to adjust to the light change. Mum and I have decided to travel separately so I can try to be independent. But I can sense her watching me as she hovers anxiously at the other end of the carriage.
I have to appear calm for her sake.
But before I can find a seat, the carriage lurches forward and I plummet sideways into the lap of a stranger.

After recovering from that embarrassment, I settle into my new ‘disabled' seat and I watch the world spin by. As a kid, I'd always been amazed at how your eyes flick back and forth trying to capture every passing image – graffiti, people, traffic lights, trees, all blurred. In a speeding train my nystagmus (flickering of the eyes) feels normal. Since my operation, my eyes have raced. They are the only body parts that move quickly. Two images, both racing.

A schoolgirl sits opposite me reading
To Kill a Mocking Bird,
a novel I had read and studied. She's a nerd, I think to myself. The extended academic strip on the left pocket of her blazer, her long, ironed dress and braided hair are proof. Finding flaws in others is somehow gratifying. Their imperfections help take the focus off mine.

A small child tugs her mother's dress demandingly. Her eyes seem super-glued to me, as if I might swallow her if she loses track of me. “Mummy, why's that girl got that thing?” She points directly at my frame. Her mum, embarrassed, grabs her out-stretched hand, saying, “She needs it to walk, Sweetie. Now don't stare.”

I hate that kids say out loud what adults think!

An elderly woman standing on the unstable train floor, clearly showing off her good balance, sees me reaching for my bag at my feet and says, “Do you want help, Dear?” Stubborn and knowing that the help I need is endless, I reply, “No thanks.”

A bearded man approaches me and says loudly, “What's wrong with you?” and then pointing at me, “You got MS?”

Shocked by his bluntness all I say is, “No,” secretly hoping that my concise reply will imply that I don't want to reveal my medical status to a stranger, let alone the entire carriage. Perhaps my frozen facial paralysis misleads him, because he keeps on guessing. He plonks down beside me. “It's muscular dystrophy isn't it?” And then even louder and slower, “Ummmmmmm, I know. It's cerebral palsy!” He is almost excited by his diagnosis.

Knowing that he will continue quizzing me with a hospital full of diagnoses I say, “I had a stroke.”
There … I'd said it. Just go away.

The train stops suddenly and a white cane zigzags on board, followed by a blind man. I immediately turn away, knowing that others will stare. But then his self-assured manner prompts me to turn back.
How could he be blind but look as though he is walking on red carpet? How are his physical limitations riding with him but not directing his route?
I realise that unlike him I still see myself as a victim. His attitude helps me become aware of the power of choice. I decide to try on my survivor suit. Getting off the train is now my focus.

I make it out of the train but crossing Flinders Street is a ten-minute ordeal for me and Mum. “Let's go.” I snap. She pulls me back.
She stresses me out
. One impatient commuter beeps his horn at me as we take the plunge. Mum's glare silences any future honks. I convince myself that if she hadn't been with me it would've been a breeze.

Having arrived in the big city, Mum reluctantly leaves. I'm independent at last, alone with my frame. My appointment is 55 minutes away, just enough time for a coffee.

I enter the nearest café trying to make my disability less conspicuous. My turtle pace forces the impatient caffeine-deprived queue to trail outside the door. I wait my turn to be served, but I'm invisible. They seem to serve everyone but me. I practise saying my order inside my head while I simultaneously try and get my balance. “One skim cappuccino with a straw please.”
Perfect, my therapist would be impressed
, I think, chuffed.

It's my turn. “A cap … with str …”

It comes out all wrong and before I've even finished my order the waitress hastily says, “That'll be $3.30.” And then, “Who's next?”

I try again. “Could I have a straw with my coffee?”

Puzzled by my query she replies, “Sorry Ma'am, um, strawberries aren't in season yet,” and then goes on serving. “Next!”

A stranger in the queue behind me interrupts, “No. She wants a straw.”

“Oh … sure.” the waitress says, bewildered at my request.

Only 30 minutes left before my appointment. The crammed café forces me to perch on a stool next to a smelly man. He croaks, “Mate, I'm so tired. You've no idea.”

In terms of tiredness, at this point I feel ‘the queen of fatigue', but I have to remind myself that it's all relative. I sip my coffee through my long-fought-for straw, slurping the last bit of fluid. I need it.

I glance at my mobile. It's 10.45. I have one new text: “EMMA, APPOINTMENT CANCELLED. MELANIE SICK. RING TO REBOOK.”

My therapist is away sick. My appointment is cancelled
. My double vision confirms my disbelief. What a waste! I still have to cross the road and catch the train home. I can't waste my energy getting upset.
Survivors don't cry
, I think, holding my tears back.

That day was a brutal beginning, not a taste but a gutful of society's misconceptions about disability. As a therapist I had listened to patients' stories of their misadventures in the outside world. Now I was living them.

I now inhabited two worlds. The outside world I had just ventured into seemed to treat me as invisible or a nuisance. In the other protected world of those who empathised with my condition, I was often patronised. Proving to these people that although I was physically impacted I still remained cognitively unscathed, became one of my biggest challenges.

Typically they would bend down to me, put their hand on my knee sympathetically and slowly and loudly say, “My Name is Penny. Do you understanD me?” With every syllable I would cringe. If I could've physically kicked them, pinned them to the ground and said,
“No. Do you understand me?”
I would've. Afterwards, I'd often relay the conversation to my sister or friends and we'd laugh. Humour was medicine of a sort, but the laughter was short-lived and moments like this scorched my confidence like a hot poker and were tattooed on me for life.

Just as bad as the long slow talkers were those who ignored me and seemed to direct every question to whoever was with me. “Does she want her hair blow dried?” they would enquire, without even looking in my direction. My friends would deliberately refuse to give the stranger eye contact. Instead, they would look at me, saying, “Ask Em, she'll tell you.”

Then there were the ones who asked me a question but wouldn't wait for the time it took me to get my halting answer out. “Would you like coffee or tea, Lovey?”

I'd be dying for a nice coffee and would happily invest energy in my reply, “Coffee, please.”

But it was obvious they didn't listen to my response when they put a cup of tea on the table in front of me, saying, “Here's your cuppa, Sweetie.”

Although their words were well meaning, in my vulnerable state I perceived their behaviour as deliberate and destructive. Negative thoughts viciously cycled in my mind and damaged my self-esteem even further. I was still having weekly outpatient therapy at Talbot, so at least I was able to share these experiences with my therapy team. My speech therapist helped me practise short and concise responses to prove to strangers that I was cognitively OK, and the psychologist allowed me to vent, and develop strategies to help me better cope with life outside. For example, when I bumped into a person from my past in the street, I learnt to quickly address them by name or bring up some earlier shared incident to prove my memory was still fine. On other occasions we looked at my feelings and how I could control my reaction to the inappropriate words and actions of strangers. These therapy sessions became a needed break and an opportunity to stop trying to keep pace and allow my emotions to catch up. There I could reflect on how I was surviving in life outside, and feel safe to express both my good and bad experiences. I felt heard, accepted and tolerated. Continuing writing in a journal was another ongoing means of coping. This was the beginning of developing the habits that were vital to staying well balanced in the future.