Reinventing Emma (16 page)

“How do you feel today?” Denise would ask.

After a few minutes of awkward silence, she'd glance at her wristwatch, seemingly bored. She was probably just checking the time, but in my vulnerable state I'd take Denise's aloof behaviour personally.

She'd move on with the questions, talking me through the ‘stages of grief' with no feedback from me.

“Are you frustrated, Em? Tell me how you feel.”

Yes of course I'm frustrated and I can't begin to convey to you how I feel. If I could yell and scream what's trapped inside I would!
I thought angrily, unable to find a way to respond in the brief pause before she continued, “It's OK to be frustrated.”

Psych was indeed frustrating and rarely included in my regime, but as my communication improved it did help. I took her advice and with her and others' assistance resumed my diary writing, keeping a journal. It proved to be a good emotional outlet, a way to let off steam.

I now wish more attention had been paid to the emotional aftermath of my stroke. The 12 bricks I carted around in physio seemed nothing compared to the mental load I was lugging around. Realistically I couldn't have survived my stroke without being emotionally scathed. Any physical trauma impacts you and those around you emotionally. Improving my plummeting self-esteem and reinventing my identity was crucial to allow me to endure the physical battle that lay ahead. It would be a long time before I could begin to accept what I couldn't change about my new self, and try to change what I could.

Chapter 24

Leaving Talbot

By summer I had joined my fellow patients, walking on the parallel bars down the middle of the physio room. I could shuffle my wobbly body around in a full circle in 30 seconds and even began using my frame to walk to the various sessions. I still needed a wheelchair for long distances and when outside Talbot, but the number of bricks in my frame's basket had been gradually reduced. I'd also graduated to the gym and had replaced my rest breaks with sessions with the exercise physiologist, Gary, who somehow made exercising fun. The gym equipment was old, but to me it was gold. Exercise had always been a great stress release for me, and this glimpse of independence meant some escape from the bubble I'd been trapped in for months.
Freedom!
When the therapy area closed at 4.30pm each day and I had to reluctantly return to the ward, I'd feel totally exhausted and overwhelmed with how far I still had to go, but felt I couldn't afford to stop. After my visitors left each night, I'd do laps of the ward on my frame, trying to get my restless body moving and restless mind to settle.

It was a time of milestones. I was even able to return to my coffee fix. After months of consuming thickened fluids and puree, I had progressively relearnt to drink and swallow better, eventually able to tolerate my favourite beverage. But even that task had to be modified. My inability to decipher hot from cold meant that I had to drink my cappuccino with a straw from a thermo cup.

This made the Talbot cafeteria a good escape for me. Rather than sit in my room or join the other patients for their smokos, I would opt to sit among the buzz of the café. I'd order a lukewarm coffee, slurp it through a straw, and read Don't Give Up-style motivational books, searching for a remedy for my low self-esteem and trying to face my latest fear – leaving Talbot.

Now that my condition was more stable I had already returned to my parents' home occasionally for a weekend. It was something I looked forward to, as therapy was non-existent at Talbot on the weekend. The therapists went home, the gym was locked, the metal roller doors barred my now daily order from the cafeteria and the fluorescent lights of the therapy zone were switched off.

At least at home I was able to soak up 48 hours of TLC and rest. But having Mum shower me and my dad give me my stingy Clexane injections wasn't what I'd imagined. I tried hard not to get frustrated and discouraged by this dependence. I had to focus on the things I could now do, to regain some control over this disability that had invaded my body. To not be the burden that I felt I had become.

I'd sometimes clear the lunch table for Mum.

“You don't have to do that, Em,” she would say, grabbing the dishes off my unsteady frame and putting them in the sink.

I'd want to say, ‘I know I don't have to, but I want to and I can!' But all that came out was, “I can. Ma.”

In spite of my efforts to feel useful when staying with Mum and Dad, I realised they couldn't sustain their upbeat attitudes when I was around 24/7. It was a taste of the future. By the end of each weekend I sensed that my family were dreading my permanent return and seemed relieved to let others care for me for a while. At the same time I'd become institutionalised and after two days away from the
centre I longed to be boomeranged back to the safety of the place where I felt now strangely more at home and accepted.
But I couldn't stay inside Talbot's walls and mend my broken body and mind forever. I was being eased out. My weekend trips to my parents' place had been testing enough, and more daunting outings were looming.

My first ‘day out' without my parents and the Talbot staff was with ten of my closest girlfriends to Miss Marple's restaurant in Olinda, a 40-minute trip in a friend's low yellow sportscar. I was emotionally stressed before the outing even began. The thought of leaving the Talbot grounds and entering a place where medical assistance was unavailable triggered huge anxiety. Of course I was excited at the return of my social life and the opportunity to prove to my friends that I had made gains, but deep down I feared how they would cope with caring for me outside the rehab centre. And indeed the trip did not go to plan.

Not only did my wheelchair not fit in the car, the transfers in and out of the vehicle were awkward and uncomfortable. My friends were well meaning but lacked the professional touch of the carers I was used to. Another issue that I hadn't predicted was the difficulty of trying to hear my friends speak over the car radio and café buzz.

The emotional impact of that outing outlasted the physical toll. I was grateful that my friends were prepared to include me but I was so embarrassed on their behalf. They'd gone out of their way and I felt I'd only made them feel totally helpless. By the end of the outing, each one of the deficits I had tried so hard to conceal had boldly exhibited itself. I collapsed onto my bed, slurring my thanks in an ataxic monotonous manner. For days after, my ears were ringing from the chatter and my neck ached from sitting in a low-backed chair.

These weekend outings tested me sorely, but a bigger challenge was fast approaching. Towards the end of my stay at Talbot, a post-operative scan and consultation with my surgeon was arranged in Sydney. This was an important milestone in my recovery. After several months the swelling was expected to have resolved and the level of brain damage could be determined. I was anxious
. Had my recovery-time ended? Was this it? Surely the scan would show that my brain was still floating in fluid and needed more time to settle.
Not only was I terrified about leaving the premises but I also had to fly interstate again, returning to the exact spot where I'd had my stroke.

If a café outing had seemed hard, dealing with airports and cabs took me way outside my comfort zone and made me realise I was far from healed emotionally. Worst of all, though, the scan results revealed what I had dreaded. The swelling around my brain had resolved, which meant I was stuck with the deficits I had. I was devastated. Nothing was going to get better by itself. Everything from now on was up to me.

I felt as though I needed more time if I was going to have the strength to face the future positively. My Talbot team, though, had a different agenda. They believed I had made all the gains I could under their care, and were already planning for my inevitable discharge into the community, where I would be ‘handballed' to another lot of therapists. I began a series of discharge appraisals to reassess my level of disability for this new team. Having discharged patients in my past life, I knew that this was a necessary process to free up beds and also eventually for the patient's benefit. But I secretly hoped that it might be different for me.
Perhaps, being a past therapist, I could stay within the safety of Talbot's walls.

Many of my deficits, like my eye problems and ongoing nerve pain, were now out of my teams' knowledge areas and likely to be impacting my rehabilitation, so referrals were made to seek the expertise of specialists, like pain doctors and ophthalmologists. The fact that my own neuro-specific medical team didn't know the answers was terrifying. I felt thrown into the too-hard basket. I was also hugely frustrated that beneficial treatments like the ESTIM machine (an electrical device targeting certain muscle groups), recommended to treat my facial palsy, was not used in Victoria. I therefore would have to arrange my own treatment interstate
. (Were there other treatments out there that I was missing out on?)

The medical professionals' uncertainty about my prognosis and future intervention only fed my fear. I felt that my therapy was being left in my own incompetent hands. I became anxious about trying new things, afraid that rather than improving I'd only trigger other symptoms. My concern about the side effects of new pain medications, the chance of developing epilepsy after my craniotomy, the possibility of falling or choking, became forefront in my mind. I began to doubt all recommendations.

My anxiety was only heightened when I was referred to psych for a standard discharge tool, a neuropsychological assessment. This would ascertain my cognitive state for ‘life after'.
Surely I didn't need yet another assessment when I had been declared cognitively unscathed by my stroke.
But it was a compulsory measure that I had to undertake. There were so many patients, both on the ward and whom I'd seen in the past, who seemed to lack insight into their new persona. They seemed unaware that they had short-term memory loss, for example. I needed to be tested, but the prospect of exposing more deficits was frightening. I began to question my own mind and ability, wondering,
Do I really still have the same personality?

In the middle of all these anxieties I surprised myself with how well I could cope ‘outside'. Before my stroke, a friend had asked me to deliver a reading at her wedding. I now doubted whether I could even do this and if she still wanted me to because when she asked me I was not looking like this. But this overwhelming feeling of inadequacy was short-lived. My team learnt of my immense fear about the upcoming event and set out to ensure that I felt confident to deliver the reading. My speech therapist worked with me on articulating the script, breaking the words down into syllables and marking the verses with places to breathe. At the same time, the physio focused on my balance and endurance while standing and talking. The bride-to-be had the words written in the congregation's orders of service to help people decipher my muffled voice and my twin sister practised holding me up. I was a swaying flagpole. This support was amazing and, although feeling so vulnerable, I felt propped up by my entire team (from therapist to family) to practise.

Soon enough my discharge destination was set and my parents' home was assessed by my OT.
This isn't needed
, I thought
. I am an OT and know what I need
. I was against any permanent modifications she recommended. Not only would it unnecessarily damage their home, it would also imply that I wasn't going to improve and was destined to live with them forever.

But things had to be put in place and soon enough their home was modified. My family were given a date to take on full responsibility for their partially fixed ‘Old Em'. As my family members had been very involved in my care at Talbot and were familiar now with my new needs, it was assumed that they'd manage easily to care for me in the next phase. But aside from old
What Is a Stroke?
pamphlets I'd collected from the dusty stack in the therapy zone, they were given very little education or guidance on where to next. I can't fathom how other patients with no family support would cope.

The social worker organised a disability pension, a parking permit and once again forms were signed on my behalf. The OT took me out to ‘real' cafés and recommendations for community services were made. A few disciplines even arranged joint sessions to include my current and future therapists and team, including my family members. This made the transition into the next phase less daunting for all of us and I felt that my team were all on the same page.

My eventual exit from Talbot was not how I'd imagined it. I had pictured myself running out of the place, with arms full of the personal items that had decorated my room. In my mind, my disability would either evaporate or stay within the Talbot walls. Instead my dad pushed me out through the doors in a wheelchair, with my belongings stacked on my knees. My disability and I were still very much an item.

Chapter 25

A Dependent, Disabled Baby Returns Home

The transition from rehabilitation into the community was a rude shock. I was moving back to live with my parents. Mum and Dad are both unbelievable people, but watching
Gardening Australia
on a Saturday night was not what I'd envisaged I'd be doing at the age of 25. In my mind, I wanted to continue enjoying the social weekends I'd always had and go out with friends.

When I'd been home on weekend leave from the centre, the house had always been packed with visitors. Everyone had dropped their plans and fussed around me, and I had been the focus of my parents' unwavering attention. Now I was suddenly aware that I was just one of their four children. Everyone's world no longer revolved around me. The number of visitors dwindled. My twin sister booked a one-way ticket to Europe. Although I wanted Bec to stick around, I knew with her go-getting nature she needed to get on with her own life.

Distractions from the reality of my new life were becoming scarce, especially during the week's normal working hours. Five days a week I went to physio and the OT at Talbot and the speech therapist would visit regularly. But this regime as an outpatient wasn't enough for me. I was determined to fix myself. After all, I was a health professional and surely knew what had to be done. I bought an exercise bike, weights, pool noodles, a balance board, some TheraBands and a treadmill, and began my own program. I would spend hours walking with my frame up and down my parents' hallway, leaving track marks on the carpet and dents in the walls from my zig-zag gait.

Being stuck at home and the routine of Dad driving me to daily outpatient therapy really began to get to me. There were days when I'd had enough. I longed to slam a door, swear with frustration, hop in my car and burn off to a coffee shop. But my physical limitations meant that the people I was frustrated with and wanted to escape from were the ones I had to ask to take me out for a break. I must have driven my parents crazy, but they stayed eternally tolerant, happily cutting short a phone conversation to help me go to the bathroom, or pausing their favourite television programs to help me carry my frame down the front veranda stairs.

I felt useless. In the past I would have contributed, helped around the house, cooked and cleaned. Now I needed them for every move I made. I couldn't communicate my needs easily because my words were slurred and still hard to understand. Still to this day my ‘phone' is mistaken for ‘frame'! How I wish when they bring me my mobile it could get me to the bathroom. Apart from my difficulty pronouncing words, I had hardly any control over how my voice sounded. Either I could barely be heard or what I was trying to say came out sounding like an angry shout. I was a difficult, dependent, disabled baby.

Running had once been my physical and emotional outlet. Now I needed something to replace the essential time-out it had given me. Relearning to swim became my next focus so I began lessons at the local pool. My family drove me and reluctantly let me enter the water, watching anxiously from the sidelines. It was demeaning – blowing bubbles, coordinating my limbs in a kicking motion, and trying to swim in a straight line.

I would try to inconspicuously slide into the water but I stood out. Fellow swimmers stared and veered away from me as I struggled to stand upright in the water. I soon learnt that in order to safely practise my many exercises, like turning in a circle or marching on the spot, I needed to be away from ‘bombing' swimmers or giant floating mats full of screaming kids.

It was the beginning of entering the outside world and realising how differently people saw me. One day I was water-walking to and fro in the ‘aqua-play' lane and sensed dagger stares from a middle-aged lady. She walked over, crouched down at the pool's edge, and beckoned me over, curling her index finger and reeling me in like a fish. “You don't swim and drink, Girl!” she whispered disapprovingly, then stood up and walked away shaking her head. She thought I was drunk … I could explain … But she was gone.

During the week, in between my rehab appointments, Mum and I hit the shops. Shopping became my new day job, with my mum as my designated driver and shopping partner. Not wanting to be associated with the word disabled, I was deeply embarrassed by her search for a disabled car spot. I'd rather have walked.

Previously a shopaholic, I quickly learnt that I no longer loved this activity. Not only did my fellow shoppers have more time to stare at me, but entering glassware shops or places where the aisles were too cluttered or narrow was a nightmare. Shopkeepers either fussed around moving breakables or just stood back and watched anxiously, hoping that their set-up would deter my entrance.

Then there were the clothes shops that I had once loved. Trying on clothes now meant lying on the cold floor of the change rooms, arms held high, with my mum ‘hula hooping' the garment over my head. After struggling to put on the item, I'd check out the spinning, double image of my reflection. Far from liking what I saw, I'd often just buy the item to save energy. Instead of giving me her normal motherly advice of, “It's a bit revealing” or “It won't wash well,” Mum would just say, “It looks great on you, Em!” I guess anything was better than tracksuits and PJs. Determined to prove that I would soon return to my old lifestyle, I often bought completely unsuitable work attire, skirts and shirts that needed ironing or required lots of buttoning.

Indoor shopping centres were a place where Mum and I were rudely confronted with the reality of life outside my comfort zone. It was great to practise my balancing, walking up and down the aisles with a supermarket trolley, and trialling using my distorted speech with strangers, but there were many obstacles: lifts not working, slippery floors, steep ramps, knocking items off shelves and copping glares or inappropriate comments from strangers, were just a few.

It was also the beginning of seeing how we would both react to these obstacles. I became acutely aware of how these incidents impacted my mum. I remember the first time a lady raced to grab a seat that I was about to claim at a crowded Gloria Jean's café…

“Sorry, my daughter was about to sit on that seat, do you mind if I take it?” Mum explained, anticipating the lady's positive response.

To Mum's horror, the woman barked firmly, “No, this seat's taken. Sorry.”

Mum looked perplexed, dumbfounded. I could see her mind searching for a comeback. Her hands clutched onto the back of the chair.
She isn't going to let this go
, I thought. Fearing a scene, when I already stood out in every situation, I stopped her, pointed to the counter stools and staggered over, hoping that she'd follow.

“Don't worry, Ma,” I said calmly, although I was just as bewildered at the lady's response.

“I can't believe it, Em. The nerve!” Mum huffed, pushing my stool in and shaking her head in the wrongdoer's direction.

“Ma, it's a waste of energy, just enjoy lunch.” Seeing how angry and protective Mum was really upset me.

That night I wrote in my diary:

A stranger took my seat at a café. Mum's brown hair turned greyish with horror, like a mood ring. I'll try harder to seem not bothered by strangers' inappropriate actions and comments. It upsets Mum too much.

The longer I spent living back at home, the more I became aware of the huge sacrifice my parents had to make to their lifestyle to accommodate me. It was comforting that they were so willing to do this, but also terrifying. Dad had stopped work, they'd modified their home, and their social routine had completely changed. If one went out, the other stayed home to ‘babysit' me.

It was reassuring to see Mum occasionally gardening and seeing her many friends, but increasingly I feared they were stopping doing what they enjoyed and isolating themselves. I felt responsible. It was hard to step out of the little self-focused bubble I existed within, but I tried to continue to show that I appreciated them. I even nominated Dad for ‘Father of the Year Award' and he deservingly won! When we collected the award we both had to tolerate the embarrassment of being surrounded by seven-year-old kids who'd also nominated their dads.

When Dad said that he had booked a trip to Antarctica, I was so excited that he was going to do something that he enjoyed, outside ‘Em's world'. I was torn between wanting him to have his life back and dreading him moving on without me. It was as if he was choosing to go forward and join every other person in this fast-paced world and might never come back. Oddly, I was just as emotionally confused when he returned.

Diary excerpt 25th february 2007

Dad returns from his Antarctica trip today. I can envisage him emerging from the plane terminal. In my mind, he'll stop and take a long deep breath to soak up every last bit of oxygen, preparing to return to his ‘caring' role. He'll bend down, get a firm grip on his luggage and inwardly say, “Here we go.” I hate that his holiday has ended. I hate that when he sees me I'll have made no gains. My only gain will be yet another eye ulcer!

Desperate for my own holiday, in the first year of my recovery I often stayed with my older sister Kate and her husband Doug in New South Wales. I felt so accepted there and flourished on their empathy. I was envious of their happy, secure marriage but so grateful that they were prepared to include me in their lifestyle. Throughout her first pregnancy, Kate and I played Scrabble, and enjoyed pedicures and coffees together. It was the time-out I needed. In fact, her first baby became my motivation to try everything I could do to speed up my recovery. My niece or nephew was not going to have a disabled auntie or see me walk with a frame.

During those visits Doug, a physiotherapist, would spend hours manipulating my limbs or giving me exercises, attempting to dim my raging pain. He also stoked my motivation and casually planted seeds of coping strategies, recommending self-help books and programs. Often he listened to my many frustrations while taking me to lookouts, beach walks or on drives. My visits there gave me a break from my rehabilitation and were exactly what I needed. I'm sure they also gave my parents respite from their caring roles.

There were times, too, when I needed respite from Mum and Dad, and my friends rescued me and took me out. I'd once loved large groups and, as an extrovert, was always a lively player in any discussion. Now I was on the sidelines watching, grieving that I could no longer participate like I had. If I mustered up the courage to add to a conversation, trying to cut into the others' loud chatter was impossible. I must've looked like a fish, opening and shutting my mouth but saying nothing. Often, one person would notice my unsuccessful attempt and say, “Em has something to say.” Then all eyes would be on me, the room would go silent, but not only had the topic passed but under pressure my words came out all wrong in an awful slur.

I somehow assumed my close friends would understand all the things that were wrong with me, but how could I have expected this of them? None of them had seen my medical records, and I hadn't bothered to explain many of my deficits to them because I didn't want more of their pity. When we went out, it couldn't be to a loud venue, or one with stairs. We had to get a parking spot nearby because my walking was slow and difficult. I was painfully conscious of hindering them and, I felt, negatively tainting the occasion.
I was a burden.

My friends were caring and looked after me so well but neither they nor or I really took into account my physical limitations. I was determined to fit back into a normal life and reciprocate their efforts, but my body constantly let me down …

One day they organised an amazing picnic to celebrate Christmas. There we all were, sprawled on the grass enjoying the delicious food they'd brought. After a short time I realised I needed to go to the toilet. I was busting. “Don't make a fuss,” I told myself, hating being reliant on them. I quietly asked for help. But by the time my friends had understood the urgency and begun looking for a non-existent loo it was too late. I had wet myself.